One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.
In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?
It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.
From there, I reached out to others. What was it like to really live life after each of these operations? Surprisingly, I already knew a couple of people who had gone through colon removal surgery. One of my friends has a permanent ileostomy and visited me in my hospital room. She showed me her appliance and told me about the full life she was able to lead after surgery. My husband knows someone who has a j-pouch, and she shared her story with me. I reached out to people on the internet, who graciously told me about their j-pouch or ileostomy experiences. One of these individuals was Rob Hill, the first ostomate to climb Everest. Each of the people I contacted seemed happy with their life after surgery.
As it turned out, I was able to avoid emergency surgery in the hospital. An infusion of Remicade successfully ended my flare and allowed me to go home and regain strength. However, several days later, my body had a weird delayed reaction to the drug which resulted in excruciating joint pain. I could hardly walk or hold a pencil while on the medication — a serious blow to someone who thrives on outdoor adventures and loves to sketch. I knew I could not live with those side effects. The time had come. I definitely wanted to have surgery. The big question remained: ileostomy or j-pouch?
I have always been one to put a lot of trust in my inner voice. It is good at reminding me what I value and want out of life. After all my research, that little voice was telling me loudly to go for the permanent ileostomy. Of course, my inner voice was not speaking blindly. To arrive at this decision, I analyzed how each surgery type would mesh with the things I loved to do the most in life.
On the top of the list of my passions was going on outdoor adventures with my husband… especially rock climbing. Our favorite routes involve spending hours, or sometimes all day, up on a cliff. With either a j-pouch or an ileostomy, bowel movement frequency is going to be more than for someone with a normal digestive system. However, I personally felt that dealing with that frequency would be easier on a climb with an ostomy appliance than a j-pouch. Ostomate climbers had told me about their methods of swapping out closed-end pouches on a two-piece ostomy systems while on routes. If my appliance began to fill up, I could wait until I got to a convenient ledge with no discomfort and then snap on a new pouch and pack out the old one. I thought the j-pouch would be harder to deal with. As it filled up, it could be hard to hold it for hours until I got to a place where I could go to the bathroom. As I can personally attest to, “normal pooping” is not that easy to do on a steep technical rock climb. It was not something I wanted to have to do regularly with frequencies of 6+ times a day. I felt a permanent ileostomy would match best with my passion for rock climbing.
One of my other big loves in life is my job as an interpretive naturalist at a park. When I was in my teens, my family went on many vacations to national parks across the country. Not only did I fall in love with these places, I was inspired by the rangers that led the campfire programs we went to each evening. Then, when I was 18, I spent a month deep in the backcountry of Rocky Mountain National Park building hiking trails. I soon realized that I wanted to devote my life to helping people connect with these wild places, and I earned my college degree in the field of Environmental Education and Interpretation. However, getting a job in this profession was not easy. Competition was fierce. I had to work seasonally and at low wages for many years to get the experience necessary to land my current permanent position. I wasn’t about to let UC get in the way of my career. When it came time to choose my surgery type, I looked carefully at which option I felt would be best at work. I am often out on the trail or up on stage leading programs for visitors, and can be away from a bathroom for several hours. With an ileostomy, I would not have to worry about being uncomfortable and holding it as I might with a j-pouch. I could empty my appliance before a program and be fine for hours. That said, I am sure there are people who chose j-pouch surgery and are happily working in careers just like mine or doing long rock climbs. It is just not the route I wanted to go.
If those were the things at the top of my list, there were also items that were towards the bottom. I wasn’t that concerned about what my belly would look like with an appliance, and it didn’t bother me much that I would never go to the bathroom in a normal way again. In fact, after dealing with UC all those years, the less I had to think about my bowels or bathrooms, the better. I also knew that there was a small risk of j-pouch failure or getting chronic pouchitis, and I didn’t want to gamble with these possibilities. Permanent ileostomy surgery seemed more predictable. I wanted to get surgery, learn to manage my appliance, and move on with living my life again. As long as ileostomy surgery gave me a good chance of doing all the things I loved again, I was happy.
When I finally had my consult with a top colorectal surgeon that my GI had referred me to, I was already 90% sure I wanted a permanent ileostomy. I remember being extremely nervous in the elevator going up to meet him for the first time. I thought he might try to talk me out of the surgery type I wanted and push me towards a j-pouch. I need not have worried. After explaining all the details of the two surgical options and hearing my wishes, my surgeon never made me feel bad about my decision to go right for an ileostomy and not try a j-pouch. He never made the permanent ileostomy sound like the lesser of the two surgery types, and I was so grateful for that. I left the meeting feeling supported, and knew I was making the right choice for me.
Now that some time has lapsed since surgery, do I ever wonder what if I had tried a j-pouch? The answer is no. Sure, there have been times when my mind curiously thinks about what that choice would have been like, but I don’t long for it. Because having an appliance-free belly and going to the bathroom the regular way weren’t high on my list of values when choosing my surgery, I am not sorry about skipping the j-pouch. Of course, it is only natural that sometimes I miss seeing my bare stomach. I would have loved it if I never developed UC, and my belly could have remained untouched with my colon functioning normally, but that wasn’t the hand I was dealt. Neither surgery gets you back to a normal digestive system. Both involve adapting to new “normals” for oneself. Now that I am used to my ostomy, it has become part of me, and life feels very routine and natural with it. The what ifs that I think about now are: what if I hadn’t had ileostomy surgery? Would I be healthy enough to do everything I love like I can currently? What if things hadn’t lined up so perfectly to have my ileostomy with my amazingly skilled and compassionate surgeon? I have absolutely no regrets with the way things turned out. The results of my surgery have been everything I had hoped for, and I am thankful for it every day.
So if you are facing surgery and are able to have input into the type, know that it is a deeply personal decision. Make sure you do a lot of research and get all the facts. But above all, listen to that little voice in your head that reminds you of the things that are the most important to you. Choose the surgical path that you feel best coincides with those values and resonates most deeply with you. I think the more you personally believe in your choice, the better you will be able to adjust to your post-surgery life and meet any challenges successfully.
Ostomy Outdoors 
I had UC. Before falling ill I loved outdoor activities, I work as an environmental trainer and love being outdoors, I do a a lot of seasonal work outdoors away from toilets. I love being on and in the water. 3 years of missing out on life, missing quality time with the kids, missing out on long walks in the countryside. I didn’t want the bag and wanted anything other than the bag, at first j-pouch sounded good, ostomy for a short time, but the more I researched it I realised I wouldn’t get my life back. I got the end ileostomy but they left my rectum so that I could decide afterwards whether to go for j-pouch. 6 weeks after surgery I was back out on the water and walking in the lakes I felt amazing! I’ve since been back doing the things I love, so to me bag or j-pouch. The answer is bag! I thought it would be awful, but it isn’t and I can do what I love and work with no worries, j-pouch – too much risk off destroying my quality of life and I don’t like a gamble. Why put myself and my family through loads more surgery for an operation that mayt not work or if does will still mean heavily reliant on the toilet? I’m not vain so the bag doesn’t bother me, it certainly doesn’t bother my husband!
Hi Donna,
Even though I had decided I wanted a permanent ileostomy, I was still a little scared of what the reality would be like. After going through the surgery, I now see that there are so many misconceptions out there. I can understand how you thought it might be awful. Isn’t it amazing when you realize it isn’t, and start to discover what is possible with the renewed health it brings?
When I finally got through the learning curve of managing my ostomy, and got out there and did the things I loved again… I suddenly realized life with an appliance was really liberating. Like you, I got back to the things that I often thought I might never do again with severe UC. My ostomy became part of me, and life feels wonderfully normal again.
Thanks so much for sharing your experiences! It is great to hear from another person who works and plays in the outdoors:)
Question did your joint pain ever go away. I have major joint pain and it wouldn’t start after each infusion for Remicade. First it would be a couple of days,then With increased Ingusions it got to the point where it just never went away. I assume it was Remicade because I was always right after the infusion. It would start the night or the morning after. Same thing I couldn’t hold a pen or walk some days. I stopped the remicade. Flared bad and was on steroids which I had to come off of and flared again and I saw the surgeon and I am doing the J pouch surgery and just had step one. It’s been a big struggle adapting to the ostomy and surgery pain! I’ve been off Remicade almost a year now and I still have the major joint pain. I don’t know if it’s permanent.i went to a rhumotilogist and All the test have been negative for arthritis and Fibro! We are stumped. I’m super scared that this joint pain is now permanent and stuck with me for life. I have no answers. Deep down I think remicade and steroids did something to them but had prayed when off them it would go away 😓
It would start after each infusion! Opps typo!
Hi Melissa,
I am so sorry to hear you are experiencing joint pain. It seems like Remicade is a miracle drug for most people, bur for some of us, it just doesn’t agree with our bodies. My pain did go away once I stopped the Remicade. It slowly dissipated over a period of about five weeks. However, I only ever did one infusion. My pain started a few days after that infusion and was absolutely horrendous… it felt like my bones were being stabbed by an ice pick or crushed in a vice. It was a 10+ on my pain scale and made me writhe around on the floor sobbing in pain. It was strange in that the pain came on most strongly at night and migrated to different joints (hips, fingers, elbows, knees, ankles) on different nights. By morning it would usually ease up some, only to start over again at night. Because the pain was so brutal and kept me up all night, I was getting no sleep. There was no way I could survive like that, so I cancelled all future infusions after that first dose and pursued surgery.
My doctors were puzzled too. Though they had seen some joint pain in patients from the drug before, they hadn’t seen anything that severe. I even had a test for drug-induced lupus (which sometimes happens with Remicade) but that came back negative. The rheumatologist my primary care doctor consulted with thought it could definitely be related to the Remicade, but couldn’t explain why. My GI team thought it could be caused steroids or UC, but I knew otherwise. I had UC for ten years and had been on steroids many times before and never had even a bit of joint pain. I know it was the Remicade as why else would I get pain five days after the infusion and then have it go away over a matter of weeks when the drug left my system?
Though I didn’t have lasting joint pain from Remicade, I did find out I have avascular necrosis (AVN) in my left shoulder caused by being on high doses of steroids when I had UC. It was discovered three years after I stopped taking steroids when I had what was thought to be tendonitis in my shoulder. Fortunately, the necrosis pain is minor and has not progressed since then or showed up in any other joints.
I wish I could give you some reassuring words. I have no idea why the pain isn’t going away like mine did. Were you on Remicade for a long time? Keep searching for answers. Maybe in time, once you recover from surgery and start to regain your health it will begin to dissipate. I am sending wishes for pain-free days ahead. I am so sorry you are going through this:(
Take Care,
Heidi
Thank you for this post! I had my colectomy just about a year ago, at the age of 29. Mine was also to cure my ulcerative colitis, so I had the whole J-pouch/permanent ileostomy decision to make at that time. Luckily, my surgery ended up being elective instead of emergency surgery, too. It has been hard for some people to understand why I chose the permanent ileostomy when I had the choice of the J-pouch, but I have always felt that the permanent ileostomy was the right decision for me.
My lifestyle is definitely not as active as yours, but one of my biggest factors was definitely getting away from the frequency and urgency of bathroom use that I had endured for so many years with my UC! I also do not take surgery lightly and so wanted to avoid the multiple surgeries I would have had to undergo for the J-pouch. I think emotionally I had been through the same cycle with so many medications, diets, herbs, etc: waiting with bated breath and hoping that it would help control my UC symptoms, and then extreme disappointment when yet another therapy had failed me. If I was going to do something as drastic as having my colon removed, I did not want to spend my time after surgery hoping that my J-pouch worked well and fearing that in the end it might not work for me. I also had precancerous cells in the very lower part of my rectum which apparently they would have needed to leave a part of to construct the J-pouch, so I wanted to get rid of that colon cancer risk by having 100% of my colon removed and going with the ileostomy.
My surgeon was great. He answered my questions and provided good information about my options, but after I finally decided and told him that I wanted the permanent ileostomy, he did tell me that he personally would end up making the same choice were he presented with that decision. That helped me feel even more positive about my decision going into the surgery. It’s always nice to get to know others who have made the same choice, too!
Kate,
Thank you for sharing your story! Your reasoning was so much like mine. I am glad to hear you had a supportive surgeon too. It makes such a big difference to work with someone who is positive and encouraging about your choice.
I do agree that it is hard to make some people understand why one would want to go for a permanent ileostomy from the get go. It seems like it is the surgical option that is so often viewed as the “last resort” or something to do only after a j-pouch has failed. I hope that people who want to go for an ileostomy right away don’t feel bad about their decision, and can see that it is a good option and has its share of benefits.
Thanks so much for all your information. I found it so helpful. I, too, just decided to go for the permanent ileostomy after a lot of thought and tears. I do believe I am doing the right thing for me. I found your blog after I made the decision and am glad that I did. Thanks so much for all your help. I will be going in for surgery within the next few months. My gastroenterologist was very patient and kind and supported me despite the fact that I have been so indecisive for the past 18 mos. I had my colon removed in December 2010. I still become stressed when changing the appliance but am getting better and learning to manage it better. Thank you again.
Hi Kathleen,
I am so glad you were able to make a decision that you are at peace with. You had your colon removed very shortly after I did. My surgery was in November of 2010.
Sometimes appliance changes still stress me out too:) Part of that feeling arises from hearing so many other people describe 5-minute changes. I start to wonder if I am doing something wrong because it takes me so long. Including the time it takes me to remove the old appliance, shower and do my whole routine to get a new one on, a change can take me 30 minutes to an hour. I realize though that comparing myself to others is silly. I have a routine that works for me, my skin is happy, and if it takes me a little longer so be it. I kind of like using my changing time as chill time. I will relax, turn on the TV or stereo in the background, check out my stoma and skin and make sure things look good and take my time to do everything right. One thing that helps me a lot is eating 6-8 marshmallows about 10 minutes before my change (talk about a sugar rush in the morning ha ha). It somehow slows down my digestive system and usually gives me time to change without my stoma spewing. I say usually because my stoma is still full of surprises sometimes:)
Another trick I use is taking a 1.5 inch wide paper towel strip and wrapping it around the top of my stoma so it looks like my stoma is wearing a chef’s hat. If my stoma poops, it fills up the top of the “hat” and never reaches the bottom of my stoma where I might be working on getting my powder, skin prep, a little piece of Duoderm I always use in a tricky spot, and my Eakin ring in place. If one strip gets full of output, I pop it off and wrap on a new paper towel stoma hat. Sometimes I go through quite a few hats:) I usually change my appliance in the morning when my output is slowest, but if I have to change after dinner because I don’t have time in the morning, this little trick makes it completely doable… even when my stoma is really active.
Best wishes for your surgery and please keep in touch!
-Heidi
Thank you so much for this blog!!!! I did choose the jpouch and having problems with it after my recent takedown surgery. I’m going back to surgery on Monday for a permanent ostomy. I’m love and outdoor and I’m a physical education teacher. I believe going back to the ostomy is the right decision for me. Your story is soooooo inspiring!!
Hi Jessica,
It must have been incredibly difficult and disappointing to decide on a j-pouch only to have it not work out. I am so sorry. I am also happy for you that you are taking a big step to get your health back. You will be able to do so much with the renewed energy your ileostomy will bring. You will be back to enjoying the outdoors again soon! Best wishes on Monday. I will be thinking of you!
-Heidi
Heidi, I gotta say finding your site couldn’t have come at a better time. I am faced with the big question now and it is a tough one. I am an extremely active person I love climbing, snowboarding and hiking the back country. I have served 6 years as a paratrooper in the Armed Forces until my UC took me down in Afghanistan 2008. Since then numerous failed treatments and surgery, now I feel great gaining weight back and so much more energy. I am a mnth out from the second surgery for the construction of the J pouch but every day that passes I ask my self can I do the things I love todo with the ostomy. You have answered those questions, Thank you. I jsut dont wanna undergo 2 more surgeries for poor results. I wanna ask how long after the surgery did you feel comfortable straping on a harness and I have to say Im alittle concerned taking a big wipper leading, would the harness not hook the stoma any suggestions. I have a black diamond and a Petzel corax 2 harness dont think it would matter but is there one you have changed to for this issue.
Thanks again Rob
Hi Rob,
Thanks for the comment and questions. You are facing a really tough decision, and I am glad that my site was able to provide some information from the perspective of a permanent ostomate. I wonder if there are any sites out there describing the experiences of rock climbers who have chosen the j-pouch option? I don’t remember finding much when I was researching the surgery options.
For me, the ostomy has been a very good decision, and I am so happy with the choice I made. Other than having to be patient in healing before beginning certain activities again, my ostomy has not stopped me from doing anything. Because of its more strenuous nature and my desire to be super cautious to avoid injury, I decided to wait about a year to get back into rock climbing and only went for the first time post-surgery in the beginning of October. Since then, I have climbed at the gym about once a week, beginning on slabby routes and moving to more vertical stuff. I hope to venture outside soon, again starting on really easy climbs.
My harness does not interfere with my stoma or pouch. I have a Black Diamond Primrose which looks similar to yours, and is the same harness I had before surgery. However, I specifically had my stoma spot marked in a location that worked with a harness. I could see how a harness might interfere with a stoma that was right on the belt line. I know some climbers with ostomies use chest harnesses in these cases. I do wear a Nu Hope hernia prevention belt whenever I climb to prevent a parastomal or incisional hernia. It is comfortable and I would highly recommend it.
As far a leader falls, I haven’t had to take one yet. In order to lead routes at the climbing gym, I will have to take a little test where I take a practice fall. We will see how that goes! I can’t see it hurting my stoma though as it sits right between my leg loops and waist belt, though maybe a leg loop could stretch up and bang into the stoma in some situations. The NU Hope flat panel cool-comfort belt holds things down pretty well, and I usually wear a pair of ostomy briefs or boxers made by Comfizz over that which keeps things from shifting even more. I would like to find something that protects my stoma once I start leading trad routes again and have all the gear hanging from my harness. There are belts with dome-like guards that sit over the stoma, and some other products like Ostomy Armor. I hope to buy these in the future and write some posts on how they work out.
I am so glad the site was helpful. I plan on doing many more posts and videos about climbing once I start getting back into it. Just starting to experiment at this point. I am hoping to have my systems down in time for Doug and I to take a short climbing road trip next summer.
Feel free to email me or post if you have more questions.
Cheers,
Heidi
Rob, do you already have an ostomy or will you be getting one soon? If you don’t have one yet you can get your rectum left in, then you can make the decision on whether to go for j-pouch or not after living with a bag for a while. I was unsure what to do, so left the decision open, but now have decided not to go for j-pouch, I’ll need my rectum removed at some point but I”m in no rush.
Donna, I do have an ostomy now and they did leave the recum for the next surgery. As it stands it is causing me a bit of grief right now but Im only three weeks out from surgery. Pressure and some bleeding from the rectum. Nothing to drive me crazy and its normal but makes me think about the problems that could occur with the j pouch. So I am going to hold off on the next surgery Im going back to school in Sept 2012 and I have to be 100% focused. I can sit through casses with no worries with an ostomy.
Rob
I am about to have a total colectomy with permanent ileostomy. My situation was like Kate’s – I only have 10 cm of rectum that is clean, my colon has high grade dysplastic tissue growth low in the rectum. My mother just died terribly of colon cancer. I am choosing an ileostomy because it’s the safest route but my family is horrified. Any words of comfort or wisdom much appreciated. Thank you for your wonderful blog.
Allie,
My deepest condolences on the loss of your mom… I am so sorry to hear that you are facing such tough decisions right after such a time of sadness. It must be incredibly difficult. My thoughts are with you.
I never had any signs of cancer, but I was entering my 10th year with active UC disease symptoms when I had my ileostomy. I know the risks for cancer go up after that, and it does give me peace of mind to know that colon cancer is something I no longer have to worry about.
Though my family was very supportive of my decision, there were some moments early on that a few of my loved ones did question my choice. Always a little better at explaining such emotional things in writing, I ended up crafting a thoughtful and heartfelt note expressing all the reasons I was choosing surgery and emailing it to my family members. I think it helped everyone see that I had given the decision lot of thought and that it was what I truly wanted. Now that I am well again and doing everything I love, everyone sees it was a good decision.
There are so many stigmas and misconceptions out there, and people cannot fathom how life could ever feel normal while having a pouch attached to their side. But life does feel very natural again. I am the same person I was before surgery… I have the same hopes and dreams and still love to do all the same things that I did before. The only difference is that now my small intestine sticks out of my belly and a pouch collects my waste. And when I think about it, that is such a small part of my life as a whole. Surgery is scary and the recovery is hard. There is a lot to learn and it can all be very overwhelming at times. Once I made it through those initial months though, the renewed health and well-being that my ostomy gave me made having surgery one of the best decisions of my life. I have not regretted it for one second.
Best wishes with your surgery and please let me know if you have any more questions.
-Heidi
I have been thinking about a reversal but looking on line I`m not convinced that is the way to go?You have all been such an inspiration-so what if you go from the front rather than the back! Better than having no control at all.
Thank you x
Hi Irene,
So glad that the blog has been helpful for you. One of the main reasons I wanted my permanent ileostomy was to have control and predictability, and I am so happy with the results of the surgery. My life does not revolve around bathrooms at all. It is quite a relief to never have that painful feeling of urgency that I used to have with UC.
It was a surreal feeling the evening before my surgery when I realized I was taking my last BM ever the regular way. I remember thinking “wow- I will never go the bathroom out of my behind again” Like you, I thought “so what?” I just wanted to feel well again and my surgery has given me my life back in every way I had hoped for.
Best wishes with your decision!
Cheers,
Heidi
Hi Hiedi,
Reading your blog gives me such a hope and strength that I will be able to manage my appliance well and not regret going for this surgery. I am scheduled to go for ileostomy surgery on June 11th and I don’t want to go for Jpouch because my rectum is always my worst part of UC and it flares up so fast and give me lots of pain. I am not comfortable leaving that there and causing more problems in the future. Also, my doctors are not 100% certain whether I have UC or Crohns even though I only have inflammation in Colon.
But I am so scared to imagine life with an external bag and how that changes my life and how will I be able to manage it. I definitely agree that getting freedom from not looking for a restroom will be a big relief but how well will I be able to manage the appliance or bag. I have two small children and I am 34 yrs old so can’t imagine myself managing the bag for rest of my life.
Reading your blog give me lots of strength so I come here often to reassure myself that I will be fine. How long did it take for you to adjust with the bad and get used to it. Any advice on appliances that would work without worrying?
Thanks for the information you have shared.
Thanks
Bhavana
Hi Bhavana,
I am so glad you found my site and that it has given you hope. It is hard to imagine life with an ostomy, but things do return to feeling normal. Now that I am used to it, most of the time I forget I even have an ostomy as I go about my day-to-day activities.
It does take time to figure out how to manage your ostomy, so don’t get too scared right after surgery if things seem super difficult. After my operation, I had a lot of liquid output, I had trouble getting my appliances on, and I was really overwhelmed by all the supplies. But worry not… it doesn’t stay like that. You will learn how to manage your ostomy with practice and by experimenting with the various products. Also, after a while, the body adapts and output slows down and thickens some.
It took me about 2 months to get the basics of managing my ostomy down and to feel good about it. Even though I was really excited about my surgery because I was so sick, I still had some rough times emotionally in those initial weeks after the operation. Soon I realized how great I felt though, and began to fully comprehend just how profoundly the surgery had changed my life for the better.
Also, during the first 8 weeks, I had to empty every few hours and a couple of times at night. Slowly this frequency reduced. At 6 months, my body finally adapted and became very predictable. Now I empty every 5 to 6 hours and hardly ever have to get up at night. And there is no urgency involved like with UC. I can usually wait at least an hour for a convenient time and place to empty.
As far as types of appliances, you really just have to experiment to find what works for you as we all have different stoma sizes, body shapes, skin sensitivities etc. I happen to like the two-piece Convatec flat cut-to-fit Natura Durahesive wafer with a velcro pouch the best, but people use all different brands. I stuck with what the hospital started me on for the first 4 months. Once I had the basics of my ostomy care down, I felt more confident to experiment and discover what I liked the most. You can order lots of samples from the ostomy product companies. All the choices can be overwhelming, but remember that you have time to figure it out. Just take it all day by day and before you know it, you will be very good at taking care of your ostomy.
One of my nurses at the hospital during my final UC flare gave me two very important pieces of advice. The first thing she told me was to get a good stoma placement. Make sure to wear your favorite jeans to your stoma placement meeting. This will help the stoma nurse give you a location that works well with your clothing. I even brought my backpack and climbing harness to the meeting. Because of this planning, I ended up with a placement that works wonderfully with my clothing and activities. The other thing the nurse recommended was to not get a stoma that is flush with the skin if it can be avoided. You want one that sticks out at least an inch. A short or flush stoma can pump output under your wafer. This prevents it from sticking and can cause skin irritation. I just made sure to ask my surgeon about this before my surgery.
Best wishes for your surgery. Feel free to email me if you have additional questions. I am happy to help!
Cheers,
Heidi
Thank you for clarifying your reasons for opting out of j-pouch. I am almost a month past my proctocolectomy with restorative j-pouch surgery, and I knew I wanted to go for the j-pouch from day one, no doubt about it. Like you, I did my surgery electively (I haven’t had a flare in over 3 years), but years of disease had damaged my colon to the point where I had high grade dysplasia multiple times ( no cancer, thank God!) Your reasoning for not doing the j-pouch makes perfect sense. Having had UC for 35+ years (I’m now 48), I know where every public restroom is within a 50 mile radius! plus I don’t rock climb, as I’m terrified of heights! 😉 I’m going to become a grandma for the first time in a couple of months, and afterwards, I’ll go in to have my ostomy taken down. I’m glad I ran across your blog…. you’ve been able to answer a few questions I have (I love wine and I love to swim!). Thanks for sharing your story with all of us!
Hi Mary,
Congrats on becoming a grandma in a couple of months! It will be so good to be able to focus on spending time with your grandchild instead of worrying about UC and the risk of colon cancer. I am glad you had a clear sense of which surgery option you wanted to pursue. I think it makes it so much easier when you feel good about your decision. Best wishes with your take down. Here’s to many good glasses of wine and swims (though not at the same time ha ha).
Take Care,
Heidi
Hello,
I had a bad experience with J-pouch, frequency, pouchitis, leakage… I felt like having colitis again. It finally took one year to convince my surgeon to get rid of j-pouch for a permanent ileostomy. I finally had my permanent ileostomy in 2005. Since I have a very active and normal life, colitis free. I’m now 40 and father of 4… I found that having a bag give me a more normal life after all. Unfortunately, surgeons don’t always consider ileostomy a reasonable option and push for J-pouch witch is now the gold standard. I felt most doctors and nurses were thinking there was something wrong with me wanting THE BAG!
Thanks for sharing, I’m not alone at last.
Hi Francis,
Thanks for sharing your story. As I mentioned in the post, I was extremely grateful that my colorectal surgeon did not try to sway me towards one surgery type or the other. He completely left it up to me which was such a relief after worrying needlessly that he might insist that I try a j-pouch. However, I had some GI docs at the hospital who were very surprised that I actually WANTED the permanent ostomy without trying the j-pouch first. Sometimes I felt I really had to justify my decision to them which was difficult. It is such a personal choice based on one’s own values and lifestyle. Fortunately, despite their own preferences, my GI docs were supportive of my choice. I am so glad all those anxious times are behind me. I got the surgery I wanted and the results of my permanent ileostomy are all I had hoped for. I feel amazing!
Sometimes I have to chuckle when I go to the doctor’s office for other things and the physicians or nurses find out I have an ostomy. They always ask me if I am going to get it reversed, and when I say no they look so disappointed. I think to myself… no need to look sad. This is exactly what I wanted. I lam so happy with my ostomy and the life it has given back to me.
Glad to hear things are going well for you too!
-Heidi
I have a question. My husband has ulcerative colitis and doesn’t like to talk about what he goes through. He had surgery 6 years ago where they removed his colon and made a pouch with his small intestine. He had to have the bag for 2 months while his insides healed and then they did another surgery where they connected his small intestine back to his anus. He has nothing but problems and doesn’t want to go back to the doctor. He is very stubborn!! I know he is in pain and depressed. The doctor gave him a tool he can use to stretch out his insides because the way he explains it to me is that he still has scar tissue and needs to open it up so it is easier for him to go to the restroom. He goes on the average of 15-20 times a day still. To me, it doesn’t seem that surgery has done anything for him. However, he is scared to get the permanent ileostomy because the one he had for 2 months was horrible to deal with. His skin was always infected, leaked, and was hard to stay attached. Is the permanent one attached differently? Will he still have the stomach pains he lives with daily? I have read a lot of info online and he thinks its what he eats that makes him sick all the time. He takes Cypro daily. According the diet plan I don’t believe it is what he eats? Another personal question is does the bag affect your sex life.? To me it doesn’t matter but to him he doesn’t understand why I would want to have intercourse with a bag between us. I know this is personal but I am hoping you can help answer the questions I have. Any info is great because we don’t know anyone else that has to live with this disease. Thanks for listening.
Hi jenny. Sounds like he had a 2 stage op, which is harder to deal with. A permanent stoma is not the same. The temp stoma from a 2 stage is a loop. It is like when you bend your finger! Permanent are end stomas like looking at the tip of your finger. Also there are many bags out there. He didn’t get a chance to experiment to find the right bag. I never leak! Also they wouldn’t rush him onto a permanent but if he leaves it he could end up with one! Or worse die! A young friend of mine (16yrs) died this year due to pouchitis, which is uc in the pouch! There is many more optons maybe going back to another temp while trhey sort out pouch. He needs to see his gi. Get him to watch ‘in memory of alison atkins’ on youtube to show how serious it is to leave it! Also ostomy awareness on youtube which also has heidi in it. Both under my name ‘meardonna’.
Hi Jenny,
So sorry to hear that your husband is having such a hard time with his j-pouch. Though I do not have any personal experience with a j-pouch, it definitely doesn’t sound like it is functioning well. When I was learning about the two types of surgery, my surgeon did say that though most people are very satisfied with their j-pouches, sometimes they do fail and then life can be pretty miserable. It sure sounds like your husband is in this situation. I have heard that some foods can irritate j-pouches, but I find it hard to believe that the severe symptoms you are describing could be entirely diet-related. I wonder if he has chronic pouchitis? Going to the bathroom 15-20 times a day and being in pain is not a good quality of life. You are right… it does sound exactly like UC. I think another consultation with his surgeon might be in order.
The ostomy pouches attach the same for permanent and temporary ostomies. However, as Donna mentioned above, your husband may have had a loop ileostomy before the j-pouch (look up loop versus end ileostomies on the internet… it is hard to describe here). I have heard loop ostomies are harder to manage. Or perhaps the doctor purposely made the stoma shorter to conserve the small intestine for later j-pouch creation?
My ostomy is an end ileostomy and I had my rectum and anus removed and the opening sewn up. There are a few things that make mine function very well. First, I had an amazing surgeon who created a wonderful, well-functioning stoma. Second, my stoma nurse did a great job of locating my stoma in a good spot for my body type, clothing and outdoor activities like climbing and backpacking. Finally, my stoma is on the long-side. Before surgery, I was told by one of my GI nurses that short or flush stomas often cause skin issues because stool easily gets pumped under the wafer and ends up contacting the skin and irritating it. Once the skin is irritated, it can get weepy and then things don’t stick. She told me to ask my surgeon to make my stoma so that it would stick out at least an inch when the post-surgery swelling went down. I talked with my surgeon about this in pre-op, and he assured me he would make it a good length. Mine ended up being about 1.5 inches tall which has worked out wonderfully. Because it is longer, it sort of flops over and directs stool towards the bottom of my pouch and never pumps it under the wafer. I never have leaks and my skin does well other than a few minor issues that have cropped up here and there and have been easy to fix. I don’t know if your husband’s first stoma was short, but if he goes back to an ileostomy again, I would definitely bring this topic up with your surgeon and ask for one that sticks out some.
Other than some occasional gas pains, I have not had any stomach pains after surgery. I had bad stomach pains for the ten years I had UC, so this is such a relief. There is never urgency with a ostomy pouch. Within reason, I can generally empty when convenient. I usually empty about 5-6 times a day. I take no medications related to UC. Knock on wood- now that I am all healed up, I can eat most anything including nuts, popcorn, raw fruits and veggies. I have not had any blockage issues. Some people with ileostomies do have to watch some fibrous foods. It is just a matter of trial and error to figure out which foods are okay. Being able to eat almost anything is one of my favorite things about having an ostomy. I love being able to go to parties or out to eat with my friends and eat whatever I want (within reason… I have Celiac disease so I have to stay gluten-free, but that is my only restriction). Again, it is a quality of life thing.
My pouch does not affect intimacy. In fact, things feel much better without a painfully inflamed colon around. I am not exactly sure why, but I never experienced body image issues due to my ostomy like some people do. I was never grossed out about it and did not feel a strong need to hide it from the view of my husband. Because my husband helped me with my pouch changes in the beginning, I was perfectly comfortable with him seeing my pouch, stoma, output, whatever. I think intimacy would have been harder if I had been struggling with body image stuff. I wish I knew exactly how to tell you to get your husband to that place, but just keep communicating your love and letting him know that you still find him attractive and desirable no matter what. My husband was always telling me I was beautiful and still made me feel desirable with my ostomy and that helped my confidence grow. He would always joke with me that I shouldn’t worry about my ostomy because he carried around stool too– it was just on the inside of his body:) It sounds like you are being very supportive. Hopefully if he goes back to the ileostomy, his acceptance and confidence will emerge in time.
Other tips for intimacy- at first I would wear a belly band just to keep my pouch from getting in the way, but after a while it felt confining so I stopped using it. Now I just wear a cotton fabric cover over my pouch (I sew my own but you can buy them) and if the pouch flops around oh well. I think the cloth cover makes the pouch look a bit more pleasing to the eye for intimate moments (and always really). The flesh-colored pouches look so “medical” to me.
I hope this helps and please feel free to ask more questions here or by dropping me an email. Sending good thoughts your husband’s way. I hope he finds some improvement soon.
Take Care,
Heidi
You guys have truly helped and I mean that. Donna after I showed him what you wrote he finally made the appointment with his GI (yeah) and I have been invited to go with (which is a huge step). Heidi I couldn’t have asked for more info than what you have given me. It’s hard to talk about personal things with people you don’t know, but more importantly about what he is going through. The stoma he had after surgery was what Donna explained. It was like a loop and his skin was always infected. So the stoma for permanent is different. I know he is scared but to hear he can eat in public is huge. We hardly ever go out to eat for the simple fact that he is afraid that he will have to use the bathroom. Plus he hates going in a public bathroom so when we go out he hates to eat so we go to dinner with friends and family and he sits there because if he eats then he uses the bathroom for the next 2 hours and he is embarrassed. He did tell me the surgery he had was what they called ileostomy reversal (not sure if same as J-pouch) He didn’t get diagnosed until he was almost 34 and now he is going to be 40 this year and since seeing this post I have told him I think his life would come back if he does permanent. He enjoys fishing, ice fishing, hunting and since having the disease he hasn’t been able to do the things he loved to do when I met him. We will see how the doctor apt goes next week. Fingers crossed the doc can give him his life back. Much appreciation to you guys for your support.
Hello..
You’re blog has really helped me to understand this, Your story is so inspiring and its so good to read and see that you have your life back after having this terrible disease.
I was diagnosed with UC last year in April 2012, and I have been suffering ever since, everyday has been such a struggle for me since and the disease has taken over my life. I was first put on prednisolne at 30mg and it worked wonderfully..but as i started to taper off my symptoms came back. I have tried all sorts of med since and nothing worked, I was put on Asacol but made symptoms worse, I was given Imuran and 6MP but suffered reactions to it and my body couldnt take it so I had to stop just after taking the medicine for 1 week.
I was back on steroids again but at a higher dose of 40mg, again helped to recover but never really felt like I was in remission, i decided to stop after tapering off down to 10mg. The side effects were terrible, weight gain, moon face, joint pains, headaches and even depression.
The only last medicine left for me was Infliximab (Remicade), I had three infusions and it helped me to control my symptoms but I was never 100%, only made me feel better for a short while. I had my 3rd infusion 4 weeks ago and now my symptoms are back and worse. I called the IBD nurse and has scheduled an app with the GI. I think the Remicade has stopped working and I am scared that I have developed anti-bodies against the drug.
I have exhausted all options and now I feel I have no choice but to go for surgery and I am leaning towards a complete removal of my Colon and no J pouch. I have really struggled for the past 10 months and I wake up everyday with this disease. I recently married and I feel that I have let my wife down with this disease and Its distroying our relationship because I never feel good do to anything and never feel like making love.
I am really considering surgery now as I want my life back, Im only 23 years old and I have missed out on so much and I really want to make my wife happy and give her all the love she deserves but even for her its so difficult for her to understand what I have to go through.
I am going to discuss surgery with my GI and try to get my life back. Any advice on what I can do or ask my GI?
Again, I really appreciate all the blogs on here! Has made me look forward to a positive outlook on life after surgery. Sorry for the long message.. I rarely talk about my disease so it feels good to let it out
Regards,
Simon
Simon, I would ask for them to remove your colon but leave your rectal stump. Then you can get well and also see how you feel with the ileo. Then you can decide (upto 5yrs!) Whether to go permanent or try j-pouch. It gives you breathing space, a chance to get well and think when your not in the situation.
Hi Simon,
It sure sounds like you have exhausted many of the drug options in your short but fierce time with UC. My journey was a lot longer, but the end result similar. Asacol and Rowasa worked for me at first. I had a couple of moderate flares in the first couple of years after being diagnosed, and month-long 40mg prednisone tapers helped with those… though I did notice that the second time I had to take prednisone a year after the first that it worked a little less effectively. My final severe flare came on suddenly after having a very good remission for a few months. My doctors put me on 40mg of prednisone… then upped it to 60mg. By that time I was in the hospital and they upped it to 80mg, but it wasn’t doing much. I didn’t have time to try the more slow-acting Imuran. I did try an infusion of Remicade in the hospital and it helped, but gave me excruciating joint pain. I cancelled the next two infusions and went for surgery. By that point, I was excited for surgery. I was tired of drug side effects… tired of being sick. I just wanted my life back so badly. Surgery gave it back to me in every way I ever could have hoped for. If you have read my more recent posts, you may have seen that I recently found out I have lasting side effects from prednisone (a disease called avascular necrosis). I am bummed about this, but never have I once regretted having my surgery and opting for a permanent ileostomy.
Only you know when you are ready for surgery and what type of surgery you want. It is something that is very hard to justify to others because it is based on your own values. I remember when I made my choice to have surgery over continuing to take Remicade, some of my doctors were pretty surprised (though they understood my decision more when I had awful side effects from it). And my doctors seemed even more surprised when I wanted to go the route of a permanent ileostomy without leaving an option for a j-pouch. I don’t think it is the expected norm for someone to choose to have an ostomy pouch for the rest of their life. But that was me and what I wanted.
I chose to have the whole thing done at once… colon and rectum removed… anus sewn shut. I think my GI doc worried at first that I was only making that choice because I had been so sick. But I had actually given it soooo much thought, research and careful consideration. Eventually she was very supportive and referred me to my absolutely amazing colorectal surgeon. For all the reasons I mentioned in the post, I was absolutely positive I wanted a permanent ileostomy. I had no interest in the multiple surgeries needed for a j-pouch and more time away from work and the activities I loved. I didn’t want the possible complications or risks that it might fail and leave me with symptoms much like UC. I wanted to get my colon outta there and move on with my life. As I mentioned, my surgeon never made me feel like I was crazy for wanting to go the permanent route right away. He was completely open to whatever I wanted to do and I appreciated that so much.
When you meet with your GI, I would really emphasize the reasons that you want to go the route you do. Be prepared to talk about the things you value, your lifestyle and what you want out of the surgery. Show that you have thought it out and done a lot of research. Even if your GI isn’t that supportive, insist on a consultation with a colorectal surgeon. They will often have a much different perspective and will be able to explain the different surgical options and outcomes much better.
Oh yeah- and regarding intimacy… things are so much better in that regard without the pain, symptoms and fatigue of UC!!!!! As long as you and your wife have a good attitude about it and don’t let the pouch bother you, it causes absolutely no issues.
I hope this helps. I am really glad you wrote. It does help to talk and let it out. When I was dealing with UC and then facing surgery, I hardly talked to anyone about it. Life feels so much better once I became more open about everything.
Best wishes with whatever route you go!
-Heidi
Thank you for your reply Heidi and Meardonna (and the fast response)..really appreciate the detailed response!
Well I had my GI appointment just a few days ago and I told the GI about my symptoms reoccurring but this more severe abdominal pains and not so frequent toilet trips, however they are very water, my main concern was that I was getting a lot of pains but wasn’t actually going to the toilet that often, only once or twice (maximum) a day.
When I was first diagnosed, I was told it was patchy inflammation which they said most likely Crohns, but after having a full Colonoscopy a few months later, GI said Ulcerative Colitis. Now after seeing a new GI she said that my symptoms are pointing her towards Crohns because I don’t get much urgency as UC patients (typically UC patients go 3-5 times a day with blood and mucus which I’ve never had). Anyway.. she suspects that my small intestines might have become narrowed or maybe some obstruction which is causing pain and difficulty in passing stool through to the large colon by this point its watery because of the narrowwing in my small bowels.
I’m really disappointed because I thought for sure I had UC and I was grateful that I could possibly cure this terrible disease by just removing it which would end it.. I had the intention of going to the appointment telling the GI that I was seriously considering surgery due to the low quality of life I currently have.
She has now referred me to have an urgent MRI scan of both small and large bowel to see if there is any narrowing and then further decide what to do, she suggested that they might use a ‘camera capsule’ to look down the whole intestines which takes 2 pictures every second to see any inflammation of the small intestines, if the MRI doesn’t show narrowing (they won’t use this method first because of the possibility of the capsule actually getting stuck!)
I asked if I could desperately go back on steroids (yes I actually asked that! shows how much the disease is taking over my life that I’m willing to go back on this awful and wonderful drug) but she said that because I’m currently on Infliximab (Remicade), being on both could cause serious infections..don’t really know about that, i desperately need something to calm my symptoms down now can’t wait around for all these further tests.
Really don’t know what to do know..it feels like I’m at the end of the road with no hope ahead
Again thank you for listening
Simon,
Sorry to hear you are going through this new twist in your diagnosis. Did you get the MRI since leaving this comment? Have you found out anything else?
There was a time a couple of years after first being diagnosed with UC that one of my colonoscopies showed patchy inflammation. Most of my UC early on was towards my rectum and sigmoid colon, but that one scope showed a patch at my cecum and then a patch just down from that towards the transverse colon. I thought for sure that meant Crohn’s, but my GI said that all the biopsies said UC due to the depth of inflammation in the wall of the colon. I guess occasionally with UC there can be a “cecal patch” of inflammatoin, though I never made sense of that other one a bit down from that. Anyway, during my final flare in the hospital, I had another colonoscopy. It showed continuous inflammation as far up as they could get the scope (they were afraid my colon might perforate), and all the biopsies still pointed to UC. My GI became pretty confident that I was dealing with UC and not Crohn’s, but she still had me take a Prometheus genetic test to try to rule out the latter. The funny thing is that the test said I did not have known genes for either Crohn’s or UC and here I was in the worst UC flare of my life. I guess the test isn’t 100% accurate in its predictions… but my GI was happy that at least I didn’t have one of the known genes for Crohn’s.
Through all that testing I kept asking if they found out I had Crohn’s, would it mean I couldn’t have a permanent ileostomy? I wanted that surgery so badly!!! I mean… what was the alternative for me? UC was making me extremely ill and I was withering away and unable to function. Remicade gave me such horrible joint pain that I could hardly walk (Humira wasn’t really discussed. I don’t think my insurance covered it but I really didn’t want to take it anyway). My quality of life was nil. Fortunately, both my GI and surgeon said even if I was found to have Crohn’s, I could still have a permanent ileostomy. I just couldn’t have a j-pouch, which I didn’t want anyway. I never had confirmed small intestine involvement though… which it sounds like you might. Some people have Crohn’s that is more limited to the large intestine and it seems like they do very well with ostomies. Sounds like you will know more about your options after the MRI. Hang in there.
Please remember that there is always hope. You will get through this! I know how hard it is to see that sometimes. I am facing an entirely knew condition, avascular necrosis, due to a rare side effect of the prednisone I was on over two years ago (you definitely don’t want to be back on steroids if you can avoid it!) Though it is only in my shoulder right now, I have no idea if or when it might turn up in major joints like my knees or hips. If it does show up, I have no idea how debilitating it will become or how many surgeries I will eventually need or how it will effect my life. But I know that no matter what, I will get through it. I am strong. Having UC and dealing with all of its lasting impacts on my life has shown me that. You are strong too. Tackle each challenge as it presents itself to the best of your ability. If something else happens, tackle that new thing too. It is not easy, but even in the midst of such hard things, there is still so much joy. What seems like the end of the road is really just a bend. It may lead you in a new direction that you never anticipated going in, but the destination will still be amazing and worth every hardship.
Again, I am so sorry to hear that you are in pain and having such horrible symptoms. One thing that calmed my symptoms a bit during the month I left the hospital and was waiting for my surgery (I was terrified I would fall into another severe flare that would postpone my surgery) was a probiotic called VSL#3. For the first couple of days I took it, it irritated things a bit until my stomach and intestines got used to it. After that, it settled my symptoms down. I had used it to help control my UC before falling ill with my final severe flare too and it helped a little. However, it never kept me in a consistent remission. If you haven’t tried it yet, I would suggest asking your doctor about it. My doctor is the one who suggested it to me, so I think it is a probiotic that many GI medical professionals are familiar with.
Best wishes and please keep in touch!
-Heidi
Finding this post couldn’t have come at s’more perfect time for me. Thank you for sharing your story. I am two months away from making my ileostomy permanent (getting my recital stump removed), and despite thinking I was 100% sure of my decision, I started having doubts. Reading your rationale reminded me if my own and I feel resolved once again. Thank you!
Sorry for the typos! Typing away on my iPhone.
I don’t know… I kind of like the sound of a recital stump:)
Amy,
I am so glad the post was helpful for you. Even though I too was 100% sure of my decision to go the permanent route and quite excited about it actually (because I knew it would give me my health back), I had a some moments of doubt. Especially when I started to feel really healthy again right before the operation. Still, I have never once regretted having the permanent option done. Not even when my surgeon told me that the pathology report on my removed colon actually looked pretty good and that the UC had cleared up. I knew that was only the Remicade talking (which I stopped because it caused me the most excruciating joint pain imaginable). I knew my colon would be an ulcered bloody mess again in no time without surgery and that I would once again be part of that endless cycle of sickness. It is amazing to never have to worry about such symptoms again and to not have to take any medication related to GI issues. I love how predictable my permanent ileostomy is. You have already made it through the toughest part and know what it is like to have an ostomy. I don’t know if you had a loop ileostomy last time, but end ileostomy stomas are much easier to manage from what I have heard. This will be the right decision for you because it is your own and based on the things you want in life. Best wishes for your surgery!
-Heidi
Hello Amy…can you tell me what is involved in making your ileostomy permanent? How long since yor surgery?I have had an ileostomy for 2yrs now. I have told the surgeon that I do not want to risk a j-pouchas it may not work. He tells me that I can just stay as I am as long as I am coping with my stoma ok.
The reason why I am responding is I did choose permanent Ileostomy because my worst inflammation is in rectum. The difference between permanent Ileostomy and regular ileostomy is they would leave rectum muscle as is in regular ileostomy, whereas if you choose permanent ileostomy they would remove the rectum and close the anal opening so you will have barbie as they famously called it. Once they do that you will not have a choice to go for J-pouch in the future. If you are not worried about your rectum causing trouble after the surgery they would general recommend leave an option for J-pouch. In my case even my GI and Surgeon both were convinced that my rectum would give me trouble if they leave it there so we all agreed to take it out. Even though I don’t regret my choice to go for permanent Ileostomy I definitely miss my healthy days when I didn’t have this disease. If I were to go back 2 years, when I have been put on 3 hours of antibiotics during my labor as I was Group B strep positive; and after that I was again put on antibiotics for getting Mastitis (infection in breast while breastfeeding). I believe both the antibiotics have caused my UC. As I never had any issues before the occurence.
Anyways..I hope I answered your question.
Thanks for the reply Heidi,
Yes I had my MRI last week after the consultant said she suspected narrowing of the small intestines, I called the GI yesterday and they told me the MRI didn’t show any narrowing of the small intestines or large. I was kind of relieved to hear this but at the same time I had prepared my self for some bad news, why? Mainly because I felt that at least this way we could move ahead knowing exactly what was causing my symptoms to come back.
Anyway, that was then ruled out..the question that popped into my head was that maybe it isn’t Crohns and its UC? Since having the MRI, my symptoms just seem to be getting worse, and now much more messy and heavy bleeding.
GI said that they want to do further tests, maybe a colonoscopy to have a good look to see what’s happening. I’ve asked if I can bring my Remicade infusion closer, but they refused to do that without a valid reason..I’m starting to dislike Remicade as I don’t think this is working for me (never been in remission since starting my first infusion, just helped ‘manage’ my symptoms, still had bad days).
So I am going to call tomorrow and request for an appointment to see the consultant as we need to start thinking seriously about treatment vs. surgery.
I’m very sorry to hear that you have been diagnosed with Avascular Necrosis, I have been reading your post about it and doing research, I hope everything turns out ok, you seem like a very strong person who’s already been through such tough challenges, I have faith that you will get through this and carry on leading a normal life.
I will keep you posted.. this weekend has been a bad one, just stuck in my room feeling ill.
Hi Simon,
I hope things are improving for you. Heavy bleeding is definitely a sign of a bad flare. I had that. Did you get a colonscopy? That should reveal much more information to help base decisions on. If you haven’t had one for a while, things can definitely change. My scopes always showed mild inflammation. Then when I fell into that final severe flare, I had an emergency scope and it revealed pancolitis. I was immediately admitted to the hospital and was shocked at how bad my UC had suddenly gotten. It is great that you are getting a consult and researching your options ahead of time. It is so much better to do that when you aren’t in an emergency situation! If things come to surgery, it is so much better to go into it when you are not super sick and weak.
Thanks for the good wishes about the avascular necrosis. I will be getting an MRI of my hip next week since I am now experiencing worsening pain in that joint. Still hoping I just have AVN in the shoulder and that the hip is just an athletic-type injury. Still, if it is AVN, I am confident that everything will turn out okay. I am feeling much better about it all now that the initial shock of the diagnosis has worn off.
Please keep us updated on how you are doing!
-Heidi
Hi Heidi,
Thanks for the reply.
The past 3 weeks have been amazing!! Since I’ve had my last Remicade Infusion (31st Jan) I have been feeling really good, I actually feel normal and human again..I have managed to do so much in these 3 weeks!! Sounds a bit silly but 3 weeks feel like such a long time that I’ve felt healthy, it just goes to show how much your health influences everyday life.
This is my 4th Infusion and never felt better, Im happy! I’m just a bit worried that my symptoms might start coming back. I agreed with the GI doctor to have my infusions every 6 weeks instead of 8 weeks because my symptoms would come back after a few weeks.
I hope I can make it through strong until my next infusion 🙂
Colonoscopy is due on the 28th Feb, GI wants to see if theres any improvements since being in Remicade, so really hope theres some good signs!
Wishing you the best of health!
Regards,
Simon
Hi Simon,
It is such great news to hear that you are feeling better! 3 weeks of health is a huge milestone when you have been ill for so long. Heck, sometimes one good day when you are in a severe flare feels great!
Keep staying positive, enjoy your recent return to health and try not to worry too much about what lies ahead. Remember that there are things you can control and things that you can’t. You are in control of your attitude, so keep finding that inner strength and trust that no matter what, you will get through the challenges (which hopefully will be much smaller now with the Remicade on board!)
Best wishes with your scope tomorrow!
-Heidi
Sorry the above post it me (Simon) I’ve created a new account ucandlife. Thanks, Simon
Hi all,
My name is Bonnie. I was diagnosed w/ Left-Sided UC in March 2010. I’m curious: What is everyone’s take on how they got UC? Me: I have a history of autoimmune disease in my family (Sister/Mother/Grandfather/Grandmother), Shortly b/4 my first flare I was highly stressed caring for three terminally ill family members at once, I also was spending a lot of time in hospitals, eating poorly and drinking a lot of wine, also in the months prior to the onset of symptoms I took Yaz (Birth control rumored to increase chances of UC) and started drinking Raw Milk (also w/ a possible link to UC). While I can’t determine what ultimately got me here…I think they all played a part. I’m just curious b/c you all seem to have had fast moving UC as have I.
I went into remission w/ mild Lialda and Prednisone treatments in Sept. 2010 only to flare again in March 2011. I wouldn’t go back on the Prednisone so Dr’s tried a host of other treatments and meds, nothing worked. In Sept 2011 I was hospitalize w/ Toxic Mega Colon and a colonoscopy revealed I now had pancolitis. I responded to steroid treatment and was put on Remicade. The first I had debilitating bad joint paint the first two treatments but eventually I managed to get into a Remicade induced remission. It was working great. Then I wound up dealing w/ a unforseable divorce…the stress pushed me into a flare again and a new symptom…Geographic Hives. Unsure of the relations to the Remicade my Dr. pulled me off infusions for about 2 months. I started back up but the Remicade wouldn’t take hold. We’ve tried booster doses and still its not working. My Dr. and I agree medicinal treatment is not an option and I’m scheduled to speak a few surgeons over the next month. (March/April 2013).
Initially I thought “Yippy, I can do a Jpouch and not have a bag forever” but now I’ve read a lot more (including this blog) and I’m not sure I want the Jpouch. I’ve had a rough go and it seems if there is a complication I’m gonna get it…so I’m wary. After readying this thread I think I may opt for an ostomy and just live w/ it for a while…then consider the Jpouch or not…at least then I have the option.
Can you swim w/ you pouch?
I heard they smell? Is that only when changing and leaking or does the smell permeate the bag?
I’m a bit overweight…do you think the extra lbs around my tummy will affect the stoma?
Do people tend to loose weight w/ the ostomy or gain?
What type of nutritional considerations do you take (if any) to compensate for the loss of your colon?
Thanks for posting your stories…they help alot.
Bonnie
New Hampshire
Age 35
Hi Bonnie,
Thanks for the great questions. Hopefully a few others will chime in too.
I have no idea where my UC came from. There is no history of it that I know of in my family. I was on antibiotics a lot when I was a teenager for acne, but who knows. MY UC was slow in coming on and took forever for doctors to diagnose. I first started noticing stomach pains in 1999 when living in Montana. I got a flexible sigmoidoscopy, but the doctor found nothing and said I had irritable bowel syndrome (IBS). The pain continued and in 2001 I started to notice blood in my stools along with it. Doug and I had just moved to California for a new job, and I met with an entirely different doctor. I had a colonoscopy and, again, nothing was found. The doctor said I had internal hemorrhoids. For the next 5 years after that, I continued to have pain and bleeding which I just lived with because I thought it was IBS and hemorrhoids.
In 2005 I moved to Colorado for my current job and got a new doctor. Shortly after that, my symptoms got much worse and I started to have urgency and diarrhea along with the pain and bleeding. I was once again sent in for a colonoscopy, only this time, I was finally diagnosed with UC. From 2006-2010 I had mild to moderate disease, but it was controlled pretty well with Asacol and Rowasa and the occasional prednisone taper. Then in the autumn of 2010, I came down with a severe flare-up out of nowhere. This one I am certain was influenced by stress and grief. The flare started 2 days before I had to put my much loved dog to sleep. From there the flare raged on. I was hospitalized for two weeks and took a dose of Remicade. That drug controlled the flare and allowed me to leave the hospital, but caused me excruciating joint pain. I had no interest in continuing the med and opted for my permanent ileostomy, which I had been strongly leaning towards anyway as I did not want to be on such a strong biologic med for the rest of my life when I knew there was an alternative: surgery. I had my permanent ileostomy about a month after leaving the hospital.
If you have any thoughts at all that you would like to try the j-pouch, you can always go back to the ileostomy if things don’t work out. I was perhaps a bit unusual in that I had no desire to try the j-pouch at all for the reasons I mentioned. I was 100% certain that I wanted the permanent ileostomy from the get go so I had no regrets or “what ifs” after surgery. Some people I talked to tried to sway me from my choice, but I knew what I wanted for my body. For me it was a very personal decision and it was hard to defend my choice to others. Follow your heart!
I swim with my ostomy all the time. In fact, I just got back from the pool at my gym a couple of hours ago where I swam for 40 minutes. I also soaked in the hot tub and went down the waterslides. Once you learn which appliance sticks the best for you and learn how to manage your ostomy, you can do anything.
Ostomy pouches are odor-proof. They do not smell except when you empty or vent out gas. Even then, there are drops you can put into the pouch (my favorite are Hollister M9 drops) that completely eliminate the odor. Try to do that with a colon:) I don’t use the drops all the time, but if I am going to someone’s house where I may be a little more self-conscious, I do add them to my pouch beforehand.
You would have to ask the colorectal surgeon you consult with about being overweight and its affects on the stoma. I am not sure about that one. I would think that ostomy pouches may stick more easily on a flatter stomach, but it is such an individual thing. There are so many different products out there to help one get a good fit with their appliance.
Other than gaining a few pounds after surgery to get back to my healthy weight (I went into surgery a little underweight because I had been so sick), I have not gained a lot with my ostomy and my weight is stable. There was a time in the first 6 months after surgery where I seemed to eat a lot and not gain much weight, but then my body went back to its normal patterns. Now I do watch what I eat and exercise regularly so that I stay a healthy weight. It was tempting to want to eat a lot after being so sick, so it took some willpower to make sure I was eating a healthy diet.
As far as nutrition, the main things for me is that I need to drink twice as much water as I used to (I drink 3-4 liters a day) because I don’t have a colon to help me absorb fluids. I also find that I need to eat salty snacks when I am active, especially in the summer when I am sweating a lot. Some people do have vitamin B12 deficiency after having an ileostomy. This is due to B12 being absorbed in the last part of the small intestine. If this part of the intestine is missing, the body will not take in the B12. I have been tested every year since surgery and I have not been found to be deficient.
Also, I am lucky in that I can handle most every food fine. I am still able to eat raw fruits and veggies and nuts. I just don’t go overboard on quantities of these things in one sitting, chew them well, and drink a lot of fluids with them. I have a veggie steamer that works really well for softening up vegetables too. Some people who can’t tolerate the fiber of veggies and fruits will use a juicer. Everyone is different with what foods they can tolerate, so one just has to experiment with small quantities of thing at first. During the first 8 weeks following surgery, one does need to be more careful though due to the intestines being swollen.
Best of luck with your decision! Please let me know if you have any more questions.
Cheers,
Heidi
Hello Bonnie
I`ve had an ostomy for 2rs now. It`s very hard getting used to+from my experience
Yes it does smell horrid.
Yes if you have a tummy it makes it more difficult
Yes you can eat normally-just trial+error
Yes you have to use the bathroom every 3hrs day+night
Yes it is hard to live with
But what is the alternative?
Just takes a bit of practice.
I am 2yrs after surgery for Colon Cancer. I did not want to go down the j-pouch road as I was sick of the sight of my bathroom. So I have stayed with my ileostomy as it was after surgery. Can anyone tell me why a `permanent` ileostomy is any diffirent? Or am I being stupid?
Hi Irene,
You definitely aren’t being stupid. It is all very confusing!
There are many people who decide to stay with their original ostomy and never go back to get reconnected. The part of the rectum that was left in for reconnection just stays there indefinitely, or if a person decides that they want to get the remaining rectum removed because it is causing issues, they can go back to surgery to have that done which makes their ostomy “permanent”. This is because once you remove the part of the rectum that is left for a j-pouch to be connected to, there is no going back.
In my case, I knew from the beginning that I had no interest in a j-pouch. Therefore, my surgeon did the surgery in a way that was permanent right from the get go. This meant that my rectum and anus were removed along with the rest of my colon, and my backside was completely sewn shut. This had a couple of advantages for me. First, the rectum that is left in sometimes still produces mucus. Without it, I never have to think about mucus draining out. Secondly, I no longer have to get that area scoped to make sure no rectal cancer is developing.
That said, I have heard that some surgeons, even with permanent ileostomies, leave the anus in rather than removing it and sewing things up. It seems like it is a matter of a surgeon’s preference. I am glad mine is gone though:) I am very happy that I never have tp think about anything draining out.
This is a really basic description and I may not have gotten all the terminology exactly right. Definitely ask your surgeon for more details!
-Heidi
Hi heidi. I might be able to help throw a little insight into the last bit of your last comment on the anus. It is surgeons preference. They are trying different techniques to try and find the best solutions. Getting the whole anus and everything removed and stitched shut from the outside can in some people cause issues with healing. They are closing a hole that shouldn’t be closed. But with some, leaving the anus just causes issues as that can get diseased. My surgeon was trialling a new approach. Luckily my anus wasn’t diseased only my rectum. By keyhole he removed the rectum and the inner layers of the anus and stapled me shut from the inside. So it ‘looks’ like I still have a hole but I don’t. Also he left the sphyncter muscles in place to support my female bits. Sometimes when they remove it all everything drops back and can cause complications. It is tricky and the surgeons are learning, what they can get away with leaving. I didn’t mind being a guinea pig as I recovered fast and so far it has been amazing.
Hi Donna,
Thanks for providing some extra insight. It sounds like things turned out very well with your surgeon’s approach. My surgeon removed it the more traditional way. He definitely said that sometimes they are tricky to heal… especially with prednisone on board. I was very relieved to have zero issues with mine. The hardest thing was just that the staples hurt for a couple of days (mine had deep internal sutures, but then the outer layer of skin was stapled). Those staples also itched like crazy until they were removed a couple of weeks post-op (I think 10 days but I can’t remember exactly). My butt incision healed beautifully and has not caused any complications support-wise. Before surgery, I had a hard time trying to picture what having my backside stitched up would be like. The term “Barbie Butt” made me think they would stitch up the whole crack or something:) Actually, once everything healed, my crack seems exactly the same as it did minus the hole. It is crazy because it healed so well that now it almost looks like there was never a hole there to begin with!
Great read. I have had a J Pouch for 20 years now with zero regrets, but I have also had pouchitis as of late and I am getting tired of getting up at night 4 or more times. My “gut” says I will return to an ilieostomy within 10 years. When I see the yearly procedural images of how inflamed my J Pouch is it makes me want it out of there, but the only thing that holds me back from the bag is the noise from gas. I am a high school teacher and a massage therapist, and I can’t imagine basically farting right next to someone’s ear on the massage table. The teaching part I can live with but can you picture going to a massage therapist who farts in your face? I know it doesn’t smell but I can’t think of a worse profession for any type of noise than massage. I don’t fear the bag at all except for that part; I look back on the six months that I had a temporary bag as a very liberating time. I have heard that the permanent bag has less gas than the temporary. I also have had other autoimmune issues and have had amazing results (as in issues vanished) with eliminating gluten, so I”m hoping that my recent elimination of dairy will also produce the same results with my Pouch. Either way I look at it; thanks to the old Gods and new for modern medicine. I’m 6’7” and 240 pounds and to think that I once weighed 100 pounds less is crazy. Thanks for you story. I think I might be joining your ranks soon.
Michael
Hi Michael,
I hear you on the gas thing. I do a lot of public speaking as part of my job and I sometimes wonder if my stoma is going to start singing at the worst time. Still, I don’t worry about it. I have noticed that as time goes on, my stoma is not nearly as gassy as it was right after surgery. Months go by without my stoma making any embarrassing noises in public. The one time when it is the most noisy is right after breakfast. I am usually still at home or commuting at that time so there is nothing to worry about. I think the morning gas has to do with my stomach being empty. When food enters my system, it forces out the air. When my stoma does make a noise in a quiet meeting, I just shrug, put my hand on my belly and sort of chuckle. Most people probably think my belly is growling because no one expects anybody to pass gas through the front of their stomach:)
I can see how gas would be harder while doing massage though. The room is so quiet! There is a product I have heard of but never tried called the Stoma Stifler: http://www.stomastifler.com/index.php. I wonder if that would help in your situation if you choose to go back to an ostomy.
I am on a gluten free diet as well. I was diagnosed with gluten intolerance and possible celiac disease with a blood test around the same time I was diagnosed with UC. Despite going on a strict gluten-free diet right away, my UC symptoms stayed the same and eventually worsened. The diet made me feel less bloated though. I still stay on the diet after my surgery because I produce antibodies when I ingest gluten. I don’t want my body to get any other auto-immune issues from eating something I know it clearly has a bad reaction too.
Best wishes with whatever you decide!
-Heidi
I am so thrilled to have found this!!! I have UC in my entire colon that has not responded to any mediation :(…… Am meeting with my surgeon on May 6, 2013 and have researched every angle of the j-pouch surgery. I have been thinking about having the bag permanently. I have been very sick for the last 13 months. Due to the severity of my UC I lost my hair and shaved my head in November. I decided at that moment I was in control and not this darn disease. I am just at the point that I feel like I want to be better now and not miss another minute with my beautiful family. I will be turning the BIG 40 in December and would rather be on the road to recovery and not the road to another surgery !! Am so thankful my little voice sent me searching and I found you !!!
Tamby,
Thank you for sharing your story. I can relate to so much of what you write. I am glad you are listening to your own inner voice. Surgery is such a deeply personal thing. Sometimes I really felt like I had to justify my choice to others for wanting to go the permanent route without trying a j-pouch. But honestly, what I wanted was so clear in my head and I am soooo glad that I followed that inner voice instead of listening to others. I am also so thankful that I had a surgeon that was completely understanding of what I wanted and never pressured me towards one surgery type or the other. Your reasons for wanting the permanent option sound so similar to mine. I just wanted to get back to my life so badly. I didn’t want two more surgeries looming over my head… especially when I didn’t much value the things that the j-pouch option would have given me. The results of my surgery and the positive effects it has had on my quality of life are exactly what I was hoping for when I made the choice for my permanent ileostomy 2.5 years ago. There were some ups and downs in recovery, and now I am still living with some lasting side effects of medications I had to take during those UC years, but life with my ostomy is so very good. I wish you all the best for your upcoming consultation and surgery.
Thank you so much for your reply 🙂 I am truly excited to get my life back on track…. I do have one question… Was it very scarey or difficult to get use to the bag? I am afraid it may hurt or be hard to keep up with… Just curious. I have ton of reading and from what I have found it sounds like the transition is fairly simple. I am hoping this is the case.
Again thank you so much for having this site! I feel so lucky to have found you..
Respectfully,
Tamby
I just recently had my second surgery for my reversal of the stoma (just one more operation to go!!). Everything happened to me in less than a year including the start of my symptoms, to going into hospital constantly and eventually my emergency surgery just a couple of weeks before christmas in 2011. I was going through my last year in school and I had to do all my exams while I was still in hospital, I had been shifted hospitals and tried all the medications available. My hair which was below my knees began to fall out whilst I was sick and has not fully recovered from what I went through in that year. I still passed with a relatively high mark and am now in my second year of uni.
I’m turning 19 in about 10 days and I am so thankful for my surgery.
I just wanted to say that surgery changed my life and there’s no need to suffer anymore. I was scared at first and have my ‘war scars’ all over my abdomen but I know that this is much better than living life with UC. So good luck and I hope you get better soon 😀
Sonika,
Thanks for sharing your experiences. I am so happy for you! Sounds like you had a tough 2011, but I am so glad to hear that your health has returned. Life is so much better without a sick colon! Best wishes for your 3rd surgery.
-Heidi
Sonika,
SO glad to hear you are doing well in school and moving forward. I am rocking a very very short hair cut do to the fact that my long hair fell out as a result of my UC. I am scheduled to have my first surgery on Tuesday July 2nd , 2013. Get this lol!! I have to have a Medically necessary Tummy Tuck!! The ostomy bag would not have sit flush on my abdomen due to the extra skin provided by my two beautiful daughters. So off to have a tummy tuck then after I heal will be having my colon removed. I figure I can rock a bikini after 12 years !! lol a bag won’t stop me from showing off my flat tummy minus the skin!!!! Trying to keep my head up and move forward . Am looking forward to being colon free and healthy again. Let me know how your last surgery goes. Best wishes and speedy recovery.
Tamby
Tamby,
I think being sick gave me a new perspective on life and health and how important health is compared to looking good. I think having the surgery has made me accept my body no matter how it changes. Good luck with your surgeries! I hope you heal fast and rock that bikini (I have to say I haven’t had the chance to do that). Recently I have seen all the new hair that has grown back and it makes me so happy to see it all going back to normal. I wish you the very best 🙂
Sonika
Hi Tamby,
I didn’t find the bag or my stoma scary. In fact, I sort of liked looking at my stoma and thought it was fascinating.
However, there is a huge learning curve for figuring out how to manage the ostomy and attach the pouch. It really isn’t that technically difficult, but it does take some time to figure out which products work best for your body. You will hopefully have nurses at the hospital to teach you. My hospital made sure I had the basic skills down before they would send me home. Once I got home it still took some trial and error with different products and methods. I remember being really overwhelmed at first (to tears many times) but eventually the frustrating moments were less and less and I became a pro at it. A good attitude is paramount and it sounds like you have a great outlook. Don’t be surprised too if your emotions are all over the place after surgery. I was really excited and positive about my ostomy, but I still went through a pretty big grieving process and even a short period of mild depression. It is a big change to one’s body and I think it is natural to go through this. Once you make it through the recovery process and figure out which products and techniques work for you, things become soooo much easier and life feels normal again. Just be patient with yourself. Try to measure your recovery in weeks (and even months) instead of days. Before you know it you will be through the toughest part.
I also had a lot of pain after my surgery, but it was manageable with pain medication. Make sure to follow your doc’s orders with the pain medications. I can remember trying to tell myself that I didn’t need them sometimes, when really I did. If the pain is too great it will keep you from wanting to move, yet walking and moving is important to heal and also prevents blood clots. The medication will allow you to have low enough pain levels so that you can move.
I had to take strong pain medications for a couple of months after surgery, though I had some incision healing complications which caused me to be in pain for an unusually long time. Most people don’t have to take pain meds that long. Regardless, I had no trouble stopping them once they were no longer needed.
Hope this helps. Please keep asking questions as you get ready for and recover from surgery! I am happy to answer anything.
Cheers,
Heidi
Heidi,
Thank you so much for the great info! I meet my surgeon tomorrow and am both excited and terribly nervous. I haven’t been sick as long as most , I have been sick for a year and boy does it seem like the longest year of my life. I am just so glad it is all coming to an end 🙂
The funny thing is , for the last couple of weeksy inflammation has decreased as well as the pain. It is almost like my colon is tryin to trick me into keeping it. All though I am now constipated ( which awfully enough is much better then have loose awful bm movents 10 times a day ) when I look and see the blood streaks I know it’s my bodies way of tricking me . Darn colon. Looking forward to moving on!! Thank you again so much for being here !!!
Hi Tamby,
That happens to so many people (including me) before surgery. It is like our colons understand that they are about to get the boot and try to behave. It is actually a good thing though because it is much better to have surgery when you aren’t in a massive horrible flare. Surgery will go much smoother with your colon in pretty good shape.
Hope things went well today!
Cheers,
Heidi
Got home yesterday from having my colon removed. My plan was to try and make the best of the bag and manage it rather than be managed. I had severe UC or 3 years and i can relate so much to everything i read here . This blog is truly healing in its own right. This has been as much a mental battle as it has physical and I am so greatful that you all share in depth the way you do. Just laying here and reading all the posts has made my day better.
Thank you.
Hi Alex,
Your kind words mean a lot to me. I am so glad the site has been reassuring for you.
I love how you say that you are not going to be managed by your ostomy. That is the best attitude and it will get you far. Once you heal up and get strong again, an ostomy won’t stop you from anything if you don’t let it. Sure there are some challenges and things to learn (especially in the beginning), but with a good attitude, creative problem solving and perseverance, you will get through any obstacles.
Keep resting up and hang in there! The first few months are the hardest as there is so much to learn about managing an ostomy, plus one’s emotions can be all over the place. Just trust that soon you will be on the other side of the recovery process and doing the things you love again.
Please feel free to drop me an email if you have any questions.
Cheers,
Heidi
Do any you have problems with your bag filling up when you are out+about so you need a loo a.s.a.p. Also with leaks when you get too hot.
Hi Irene,
My pouch usually fills up pretty slowly so there is plenty of time to find a bathroom with no urgency whatsoever. I like to empty when my pouch is about 1/3 full. When it gets to that point I still have plenty of time (even up to an hour) to find a bathroom. If I do wait in these cases, the pouch will get closer to 1/2 full which isn’t ideal because it feels heavy, but it is not an emergency.
Once in a great while, I will get pure liquid output for whatever reason and in these cases the pouch will fill up much faster. I can tell when this is happening and then I know I need to be a little quicker finding a restroom (but nothing like the urgency of UC!) Again, these cases are super rare and usually the result of eating or drinking something that didn’t agree with me (like wine on an empty stomach… it gives me instant liquid output. If I drink with food I am fine).
I am fortunate in that I don’t experience leaks when it is hot out (or at any time). My appliance sticks well to me no matter what. I even did an all-day rock climb of Devil’s Tower in Wyoming on a 98 degree day. I was up on the rock sweating for 13 hours and my appliance still stuck like glue. The key for me was experimenting with different brands. I find that Convatec Sur-fit Natura Durahesive wafers adhere to me the best for swimming and sports where I sweat a lot. I also use Eakin Rings which help prevent leaks.
Hope this helps. Please let me know if you have any more questions.
Cheers,
Heidi
So glad i found your site. I currently have an end ileostomy after suffering UC for 9 years. Surgeon left rectum in for J pouch option, but after living with my ileostomy for 2 months now and researching J pouch, i really can’t see the benefit of a J pouch as it seems you end up with UC without having it if you get what i mean. Your blog has helped me a lot in making my decision (which i think is already made) about keeping my stoma. It has saved my life (after suffering a severe flare earlier this year) and given me my life back, i am so happy now and my stoma doesn’t interfere with life. Yes there are adjustments to make but i think it’s down to attitude.
Your blog is brilliant and gives support that only people that have been in this position can give and understand.
Keep up the good work.
Hi Jo,
Thank you! I am so glad my blog has been helpful. Deciding on a j-pouch or permanent ileostomy is such a personal choice as it is based on your own values. I think it is so important that you are listening to your heart on the decision. There were some people who tried to sway me one way or the other, but I knew what I wanted for myself and held steadfastly to that choice. I have never once regretted my decision to go the permanent route. Maybe it wouldn’t be another person’s choice in the same situation, but it was the right option for me. You are right that it comes down to attitude. Yes, there are challenges but nothing that can’t be overcome. My stoma has not stopped me from doing anything because I don’t let it. I certainly have fears (for instance… I am a little nervous about emptying my appliance this summer when I will be roped up with other other climbers on an ascent of Mt. Rainier), but I try to face the things that scare me and do them anyway. That is how I gain confidence with my ostomy. I can’t emphasize enough how normal my life now feels with my stoma. It sounds like you are already getting a sense of that, but it will get even better as time goes on. You will become even more proficient at your ostomy system and your small intestine will adapt even more as well. At around 6 months is when things really fell into place for me.
Wishing you the best!
Cheers,
Heidi
hi my name is Amanda ive had an illiostomy permanant for 23 years and would like to know about an intr=ernal pouch my large insestine and rectom has been removed and i would like to know if it ia possable for and internal pouch as i feel so ugly and havent been able to be intr=erment due to it . Do you know off any colorectal surgons who would be oreoared ro to it ?
Hi Amanda,
I am sorry that you are having a rough time with your ileostomy. Do you know if your anal canal is still intact? The surgeon would need something to connect the small bowel (which is formed into an internal pouch called a j-pouch) to. I chose to have had my rectum and anus removed entirely so I am not a candidate for this type of surgery and so I don’t know a lot of specifics about it. Maybe someone else can chime in. As far as colorectal surgeons– do you have a GI doctor that might be able to recommend someone? The American Society of Colon and Rectal Surgeons has a site to help one find a surgeon too. Maybe that would be a good place to start. http://www.fascrs.org/patients/find_surgeon/
Is there anything you can do in the meantime to make yourself feel better about your ostomy? Everyone seems to react to the body image part in their own way. I found that getting back to the activities I loved helped improve my self esteem. It also helped to find clothing that worked well with my stoma so that I could dress well and feel more attractive. In addition, I joined a local ostomy support group so I could talk with others who had been through the same surgery. Meeting other people who were out there living normal lives with their ostomies helped immensely. Do you have groups like that in your area? People there may also have a better idea of surgeons in your area that would be best for the j-pouch procedure. I know at my local support meetings, people are always talking about their favorite surgeons. Here is a link to the United Ostomy Association of America’s support groups: http://www.ostomy.org/supportgroups.shtml
Wishing you the best!
-Heidi
I had my colon removed 8 years age and went with the j pouch. No one ever asked me if I had considered a perm ileostomy. I wish they had. My quality of life has changed so drastically. I golfed and walked all my life then at 50 everything changed. I’m asking my dr now to close the j pouch but I’m worried my insurance won’t cover it. I love your amazing attitude. Good luck to us. Enjoy your life!
Sorry I meant 8 years ago.
Kathy,
So sorry you are having a hard time with your j-pouch. I hear so often that people were not really given the option of a permanent ileostomy. I am so thankful every day that my surgeon clearly explained the choices and let me decide. I think sometimes medical professionals just assume that no one would want to live with a permanent ostomy… or that it should only be a last resort after trying the j-pouch. But it can be such a good option and can allow one to get back to living life fully. I really hope your doctor is supportive of your choice and that your insurance covers things. It sounds like you are dealing with some clear quality of life issues. Best wishes!
-Heidi
Well I talked with my surgeon and will talk with my ostomy nurse soon. I was wondering when you had the colon removal, rectum and anus removed did you heal quickly. I have read where the rectum can be sore for several months. Did you have any nerve damage? I hope I don’t get that. What kind of pain pills did they give you and did they work? Did you have home nursing? I will have a Ostomy nurse and I think they can come to your home. How did you handle the nursing thing? Did you have to use a IV drip at home? I know I have lots of questions but it is important to me. What kind of liquids did you drink at home? I was wondering if smoothies are okay! When can you get on solids? I am having a general surgeon but he is excellent at this. I am still scared but I made this decision because nothing is working. I do not want to get colon cancer either. I had UC for seven years. I was wondering if I will have any bladder problems as well I have my husband with me now and hope he will be okay. I hope I can hold the liquids when I get home. Dehydration is no good! Enough of my ten million questions. Just a little scared at this time.
Hi Carol,
Sorry it took me so long to respond. I was backpacking out in the Holy Cross wilderness over the weekend. So gorgeous!
No worries about all the questions. I am happy to help.
1. I did have my rectum and anus removed and my backside sewn shut. I had no problems with mine healing. My surgeon used sutures in the inner layers and then staples at the skin level. It did itch like crazy in the initial weeks of healing, but I never found it overly painful… even when sitting on it. The pain in that area was more of a minor deep dull ache that eased up as the months went by. It took a while for this to completely resolve, but by one year post-op, that minor dull ache was completely gone. Again- it was nothing debilitating. My surgeon said there are a lot of muscles and nerves in that region and it just takes a while for things to normalize.
2. I had no nerve damage after surgery.
3. The most painful thing about surgery for me was my midline abdominal incision and then just the inner pain where my colon had been. I actually needed some pretty heavy duty pain meds. I had a pain pump at the hospital with Dilaudid which worked well to control the pain. Once I switched to oral meds, Vicodin and Percocet were not strong enough to control my pain, so I was sent home with the oral version of Dilaudid which was called hydromorph. This worked well for me. I took it for about two weeks and then stopped and switched to Tylenol and Ibuprofen. I did have some more abdominal incision healing complications over the first few months following surgery and took Vicodin which in that case was strong enough.
4. I did not have home nursing after my initial surgery. I had two different ostomy nurses visit my hospital room to show me how to change my appliance (the hospital liked having patients get two different opinions). Once I showed I could do it on my own, I was allowed to be discharged. I did have one home health ostomy nurse stop by a few days after getting home just to make sure everything was fine. It was, so they were not scheduled to come by again. However, if I would have had problems, they were available to be called for a visit. I did go see my regular ostomy nurse a couple of times after surgery to get help with various things that came up. I still call her 2.5 years later if I have any issues.
Two months after my surgery, I did have to get a wound vac for my abdominal incision healing complications. At that point I did have a home health nurse visit every other day to help me change the wound vac dressing.
5. Once I left the hospital, I did not use an IV drip. Once I got home I was actually pretty mobile within a week and could function well. I couldn’t drive for a few weeks (while on pain meds) and couldn’t lift anything, but I still went out and shopped for food (and even went on a couple of clothes shopping trips) with my mom who was visiting from out-of-state. I did get tired easily and had to take A LOT of naps.
6 and 7. I didn’t do many fruit smoothies in the initial weeks after surgery (though I can’t see why it would be a problem if everything was blended really well). I was found to be protein-deficient, so I made a lot of whey protein shakes. I put whey powder protein mix (Biochem was my favorite), soy, rice or cow milk, and a banana in the blender along with some ice. I also drank a lot of fruit juice watered down to half strength. I only had to be on an all-liquid diet for the first day or two after surgery. During the first 1-8 weeks after surgery I was able to eat pasta, rice, oatmeal, eggs, yogurt, cheese, ice-cream, potatoes (without peels), canned carrots and beans, fish, chicken, hamburger and roast beef made tender in the crock pot. After 8 weeks I slowly started introducing raw fruits and veggies, nuts and other higher fiber foods and found that I did fine with them.
8. I had no bladder problems after surgery. Yes! Hydration is super important… especially in those first 6 months. After that, the small intestine adapts and absorbs some fluids, but never as well as the colon. I have to drink a lot more water than I used to.
These are all really great questions! Hope things go well. I am so glad to hear that you found a surgeon you like working with.
Cheers,
Heidi
Heidi your the best! Had a three step procedure to install my j pouch back around 1989 its been 25 years and my fight is over with this lousy small pouch which holds nothing with all the pains you have read through your fabulous blog! I’m on every medication from oxy condone to pentasa .Imodium to name a few. It ridiculous my worst decision in my life was getting a j pouch nothing .comes closer! My surgery was in three stages to allow the pouch to heel after that first surgery ti should of opted for a permanent ileostomy I was strong as a bull after getting out of a 60 day hospital nightmare in 3 month gain muscle mass I never have been able to achieve with this lousy jpouch! I’m going to be 48 soon and yes I have accomplished much In life but it was with superior pain management and great inner strength , I can only imagine how much greater my life would of been and will be shortly feel free to email me when ism more coherent as I’m on 10 mg of ambien and a oxy condoned to knock me down. Peace to all of you!
Hi Anthony,
Thanks so much for writing and sharing your story. Sorry it took so long to get back! I am trying to work my way through emails and comments after returning from my trip to Rainier. If I am understanding things correctly… you just had the surgery to make your ostomy permanent after a troublesome j-pouch or are you still waiting to? Either way I hope you are feeling better!!! 25 years of living in pain is horrible. I am so glad you are taking a step to get your life back. Try not to think of the years you missed (though it sounds like you made the best of it and stayed strong!) Instead, think of how much better things are going to be now and of all the fun plans you can carry out as soon as things improve.
Please send me a note at the contact link at the top of the site (or comment back here) and let me know how you are doing. Sending good thoughts your way!
Take Care,
Heidi
After 5 – 6 years with excruciating ulcerative colitis, I had the j-pouch made in 3 separate surgeries. It’s been 20 months since the last one and chronic pouchitis developed, which I understand happens to 1% of j-pouchers. Before the surgeries, I had spoken to 3 j-pouchers that had very successful outcomes hence the choice to follow their footsteps. However I’m now planning to revert to a permanent ileostomy as it was a relatively heavenly lifestyle compared to colitis and the last 20 months have been hell…. but that was just the luck of the draw.
On the psychological/emotional side of things, these challenges made me learn a heck of a lot about myself……sometimes I think we learn more through pain than through pleasure. That being said, if I had to do it over again, I’d go for the permanent ileostomy from the start. But it’s of course impossible to predict the outcome of our decisions. Regardless, there’s a silver lining to every cloud. Always focus on the positive. Two men behind prison bars; one saw mud, the other saw stars.
Hi Phil,
I am so sorry to hear that your j-pouch didn’t work out. You are so right that so much of this is luck of the draw. One just has to follow their heart after doing the research and make the decisions that seem the best at the time. And these are some tough choices!!! If things don’t turn out as planned… you just have to adjust, stay strong and positive and keep working towards the outcome that will give you the best quality of life possible. It sounds like that is exactly the approach you are taking and I am glad to hear that you are going to go for the permanent ostomy now so that you can start regaining your health!
Yes- there is so much to learn through all of this isn’t there? Ever since getting so sick with UC and then having surgery… I reflect on so many things I never even thought of before. The difficulty of the experience has made me appreciate the little things in life. It also taught me to better focus on the here and now and not worry about the “what ifs” of the future so much. I honestly wouldn’t trade the experiences in… the lessons have been far too valuable.
Here is to feeling better soon!
Heidi
Hi Heidi,
I have had a j-pouch for 18 years and have had chronic pouchitis for 16 years. Been through all the meds, last was remicade that resulted in neuropathy, and have dropped the med and am recovering.
I am considering an end ilostomy. I have read of the positive outcomes, but have there been any failures? As noted earlier, I too was told the j-pouch was the cure, but problems continued. Is the end ileostomy the true cure or are there complications, chronic or otherwise, that can be expected?
Thanks,
Mike
Hi Mike,
I had a nonfunctional j pouch for 20 years and it was a total nightmare! Just had the j pouch removed at mt Sinai three months ago and doing fine. The continuous pain I was having with the j pouch was immediately relieved with much less pain even after major surgery. This was definitely the largest and hardest of the surgeries to recover from ( being now 47 has something to do with it). This is the cure if the j pouch isn’t working properly. I only take Imodium to slow my system down and after 3 months I’m tread milling 1.5 miles a day and started to lift weights again and nearly back to my fighting weight. I can eat anything I repeat I can eat Anything! My energy level is much greater and I still have some recovery to go. I wish you luck!
Hi Anthony,
Thanks for sharing your experiences with Mike! I am so happy to hear that things are going well for you.
-Heidi
Hi Mike,
I am so sorry to hear that you have had trouble with your j-pouch. Surgery decisions are so incredibly difficult. It sounds like you are doing a lot of research which is great. Some of your questions are better suited for a medical professional but I can definitely share some of my experiences and a few of the things I have learned.
With any surgery there can be failures and complications. There are definitely no guarantees… but you have to look at your quality of life. Is that risk worth the possible reward of getting your health back? For me the answer was definitely “yes”. I was miserable with UC, and Remicade gave me the most excruciating joint pain imaginable. I just wanted to get back to all the things I loved in life so badly… my job, the ability to do fun things with my friends and family and my favorite sports. I was willing to take a chance on surgery. In my case, the results have been everything I could have ever hoped for.
I would ask your surgeon for specifics on complications and failure rates so you have all the facts. My surgeon went over all of that with me at my initial consult but I honestly can’t remember the stats. I don’t think that surgery “cures” the disease in the traditional sense of the word. However, it “cured” my most debilitating symptoms… diarrhea, urgency, lower abdominal pain, non-stop bleeding, iron deficiency, weight loss and fatigue. However, some people still have the other symptoms they had with UC such as joint pain. I never had any joint pain with my IBD and I don’t after surgery either (well… except for avascular necrosis in my left shoulder—a rare side effect of high doses of prednisone–but that is a whole different issue). I was also told that surgery would not prevent primary schlerosing cholangitis which can be associated with UC (I don’t have this).
I do know that some people get parastomal hernias or even incisional ones. Because of my midline incision being stubborn in closing (I had open surgery and my body rejected some sutures), I was told I was more prone to that type of hernia, but so far so good. I eased into lifting activities slowly and always wear a hernia prevention belt whenever I do strenuous activities.
I also had my anus and rectum removed and that area sewn up. I was told that sometimes that area can be slow to heal, but mine healed wonderfully with no issues whatsoever.
Blockages can also happen. I have yet to experience anything even close to one and I eat just about everything—even nuts and popcorn. Everyone has different experiences with that though. Some people do have to watch what they eat. Limiting quantities eaten at once, chewing food well and drinking lots of fluids helps. For me it is not so much what I eat but how I mix things. An apple with peels with a sandwich = okay. An apple with peels on an empty stomach = some trouble. It just takes some experimentation to find out what works.
A surgeon spoke at our local ostomy support group meetings and mentioned some of the other stoma complications that can happen such as prolapses and stomas becoming stenotic, but again… those would be things better described by your surgeon.
So far, knock on wood, I have not had anything strange happen with my stoma except that I occasionally get ulcers on it of an undetermined cause. I had them biopsied and they are not Crohn’s so I just live with them. My GI thought they could just be from irritation from the bag, but she doesn’t know for sure. They come and go, don’t cause any other symptoms and I feel great so I don’t worry about them. It does seem like there is always a small chance of really having Crohn’s and not UC, but I have learned to not focus on the “what ifs” all the time. If it ever happened–I would cross that bridge then. For now, I am going to focus on how amazingly healthy I feel.
Many of the ostomy-related woes I hear from other people stem from stomas that end up being too flush to the skin for a variety of reasons or those placed in less than ideal locations on the abdomen. You have the benefit of planning your surgery ahead of time (as opposed to being in an emergency situation). I would talk over stoma length with your surgeon and try to get one that is at least an inch long if at all possible. Mine is more like 1.5 inches long and I love it because it flops downward and points stool towards the bottom of my pouch and I never get leaks. Flush stomas end up pumping stool right under the wafer which causes skin irritation and can prevent appliances from sticking well. Also, work with a WOC nurse to get a stoma placement on your abdomen that works well for your body, your clothing, and any sports you do. Since backpacking and climbing are huge passions in my life, I brought my backpack and harness to my placement meeting. I have a friend who loves cycling so he rode his bike to his placement meeting so that he could get a good location for that activity. When your stoma is permanent, getting the best placement is super important.
I would highly recommend going to a local ostomy support group if you can. It is a great place to meet people who have been through the surgery and hear their stories. At my meetings there are always folks that are contemplating surgery, those who just had it, and people that had their operations a long time ago. There are also several people in my group who have gone to end ileostomies after having j-pouches. Going to these meetings is a wonderful way to get multiple perspectives.
I hope this helps! I am glad to hear that your neuropathy is resolving. The joint pain I got from Remicade went away when I stopped the drug though I was scared for a while that it wouldn’t! It was brutal and I am so relieved that I don’t have to deal with that or other UC drugs now.
Best wishes as you make your decision!
-Heidi
Hi Anthony and Heidi,
Thank you for your comments and the additional information. I am planning to meet with a surgeon the end of the month, so your additional information on questions to ask will be very helpful.
‘Cure’ is a relative word, returning to a somewhat normal life style without the abdominal inflammation, pain and distention is the goal.
I did have some complications from earlier operations, but it good to know this end ileostomy should not add major issues.
It is also encouraging that your strength, stamina and menu selections return to ‘normal’.
Thanks again for your information and insite.
Happy New Year!
Mike
Your welcome Mike! One of the biggest reliefs after permanent ileostomy surgery is that I no longer have any abdominal distention (well except perhaps at Thanksgiving ha ha). I experienced distention horribly with UC along with pain and it is sooooo wonderful to not deal with that anymore. I was just mentioning to my hubby the other day how amazing it is to have a flat belly again. Despite having a pouch on my stomach… I think my clothing actually fits more comfortably now without all that bloating. I hope the consultation with the surgeon goes well!
-Heidi
Thanks for your insight.
Mike
My pleasure ,I wish you the very best in your continued recovery and getting on with enjoying life!
It is so interesting to read your blog here. I just ran across it doing research, getting prepared for my surgery. I had a temporary ileostomy for a short time, back some 23 years ago, then with a j pouch ever since. The surgeon I saw back then made it seem like it to be the best thing since sliced bread. I felt so healthy and wonderful with my ileostomy, it didn’t take me long after takedown to realize I made a huge mistake. But I kept putting up with the j pouch, and all its problems because I was scared to death of more surgery. But now I can tell its time to finally have it removed, and am looking forward to it finally being gone. I look forward to a good nights sleep. Can you imagine, the last time I had a good nights sleep was 23 years ago when I had the ileostomy? I cannot remember what a good nights sleep would even feel like. Every night since takedown has been waking up in pain from cramps, 2 or more trips to the bathroom, and such. My mom has had an ileostomy for 50 years now, and has never had one single health problem related to it. On the other hand, I have spent enough on doctors, medicine, and all that with the j pouch, I could have bought ileostomy appliances for a couple hundred years. ( maybe exagerating slighty there) It is nice to see a site like this. I just cringe when I look over the j pouch boards, and see person after person in complete misery from the pouch. I wish more people were encouraged to just go for a permanent ileostomy first, and the the j pouch if it is not working out for them. Sadly, it seems to always be the other way around.
Wow Greg– I am so sorry to hear that you have had so much trouble with your j-pouch. It sounds like it has been really tough.
You are right that so often the permananent ileostomy is thought of as the the surgery type that one should go for only after one has tried every last med or has tried a j-pouch. I think a lot of that has to do with the fears and stigmas that surround living with an ostomy pouch… yet in reality one can have an amazing quality of life with an ostomy. I try to show that on my blog.
I didn’t want to be on Remicade for the rest of my life as a treatment for my UC and I didn’t want to try the j-pouch…. my choice to want a permanent ileostomy right away was very unusual. I remember being worried that my doctors wouldn’t be supportive and some of them seemed surprised that I would choose to live with a ostomy pouch for the rest of my life. I had to have some heart-to-heart conversations with them about my lifestyle and the things I valued in life and why I thought the permanent ileostomy would be the best fit for me. Eventually they got on board with my decision. My surgeon was great about describing the pros and cons of the surgical options and encouraging me to choose what I wanted with no pressure either way. He never made one surgery seem better than the other and didn’t suggest that I definitely try the j-pouch first. I felt empowered to make the choice that I felt was best for me. I don’t know that everyone is fortunate enough to have that experience with their doctors. And perhaps many people don’t have as strong of a sense of what surgery type they want so going for j-pouch leaves more options open. In a permanent ileostomy like I had, my anus and rectum were also removed and the hole there sewn up so there would be no chance of reversal.
Try not to think about the time you missed dealing with your j-pouch. What you have to focus on is the here and now– and you are taking an important step to get your quality of life back by having the failed j-pouch removed. Here is to renewed health and fewer overnight trips to the restroom! I rarely have to get up at night to empty mine.
Best wishes with your surgery!
-Heidi
I wish there had been something like your blog to read 32 years ago when I made the decision to have permanent ileostomy surgery. I had first had UC when I was 18 and was so sick I was hospitalized for a month, not even remembering half of that time. I continued to have problems, took azulfadine (?) and would use steroid enemas and prednisone sometimes. I married and after my son, then my twins were born I had had enough of the pain, bleeding and always being in the bathroom (not easy with a 3 yr old and 18 month old twins!) and after much discussion with my primary dr, my gastro dr and my husband I decided to go for a permanent ileostomy. The surgery went well, recovery went well and I have been very happy with my elective surgery decision. I can eat whatever, just am sure to chew thoroughly and drink a lot of water, haven’t had trouble managing my ostomy, swim, have traveled a lot, including 4 cruises, one European river cruise, traveled Italy (where bathrooms aren’t ANYTHING like ours in the US are, trust me!), many US vacations and have never had any issues. I always make sure I take at least twice as many supplies with me as I think I’ll need (especially in Europe where you can’t readily get supplies). One of the best things I have found fairly recently for odor when emptying my pouch, is Devrom capsules. They are fantastic!!! You can take two, four times a day, but I only need one four times a day and I have absolutely no odor at all and also no embarrassing noises from my ostomy. Best thing ever!!! They are available online. Last fall I had to have an ostomy revision surgery because my stoma had become too flush with my skin and was causing leaking. I have a wonderful colo/rectal surgeon and she did a great job. My current issue is I am going to have to have rotator cuff tear surgery on my right shoulder and I’m worried about how I will handle taking care of my ostomy, since my arm will be in a sling for a few weeks and moving my shoulder will cause pain and could slow recovery. If anyone has experienced this I’d love to hear how it was handled.
Hi Sandy,
Thanks for writing! I am so glad that you are also able to lead a very full life after surgery and that you too had a wonderful surgeon to help you get to that point. It sounds like you have done so many things. I would love to take a trip overseas someday.
I have heard of the Devrom capsules but have never tried them. It sounds like they work great!
I too have trouble with my shoulder– in my case it is from avascular necrosis (a bone condition induced by the prednisone I took several years ago for UC). The joint seems to be doing okay, but if it ever gets worse I would probably need surgery on it. I have often wondered how that would impact my ability to manage my ostomy. I would probably have to have my hubby help me with changes just like in the early days after surgery. One product I tested out a couple of years ago that I think would be great for emptying a pouch more easily with an arm in a sling would be the One Pass Ostomy Draining Device (http://www.opodd.com/index.php). I wrote up a review of it here: https://ostomyoutdoors.com/2012/07/08/the-one-pass-ostomy-drainage-device-a-great-product-for-the-outdoors/. I love the product and still use it all the time.
Hope this helps and best wishes with your surgery!
Take Care,
Heidi
Hi Heidi,
Thanks for replying back to me. I have never heard of the One Pass Ostomy Draining Device, but can see where it could be useful in different situations. I had my shoulder arthrogram last week and got good news! I have a partial tear and my surgeon thinks it can heal using other things and not surgery!! I was so relieved!!
Thanks again,
Sandy
Hello, my names Andy, I’m 22 & I’ve had UC for 5 years now. My mind has been made up & I want to get an ileostomy. My quality of life is being affected too badly. My UC has robbed me of some of the best times of my young life & its wrecking what I have left of being young. The last couple of years its had a knock off effect my social life & started to really affect me looking for a job effectively. I’ve had annual flare ups ever since 2009, each one being worse than the last despite being on medication daily. So yeh, my mind is made up. I have educated myself on ostomies for a good long 6 months & I feel mentally prepared for one. However I am afraid of approaching my gastro doctor about it in case he says no 😦 Does anyone have any suggestions?
thanks
Andy
Hi Andy,
Thanks for writing. I am so sorry to hear that you are going through such a rough time. I too sometimes felt that I was losing control of my health decisions when it came to UC and surgery. My doctor was first surprised that I didn’t want to try Remicade (though I did and the joint pain side effects were horrendous for me). She was then surprised that I wanted to go straight to a permanent ileostomy without trying a j-pouch. I had to listen hard to that inner voice that told me that the permanent ostomy was the best choice for me, and I had to be honest with my doctors about what I wanted for my body. I ended up having some heart-to-heart conversations with my medical team about my values, what I wanted for my lifestyle and how I thought surgery would get me there. Eventually, after hearing these things, they became supportive. I would explain to them exactly what you explained in your comment. They may be more reluctant to be supportive of surgery due to your young age. However, think if you talk to them honestly and openly about your quality of life issues, they would at least agree to referring you to see a colorectal surgeon for a consult. This will give you a lot more information to base your decision on. The decision to have surgery is a deeply personal one and hard to justify to others. Remember that it is your body and, when possible, you should have a say in decisions that impact your quality of life. I don’t think many doctors realize just how difficult and painful it can be to live with UC. Life without a colon can be absolutely full and amazing! My colon was ruining my life and I am really glad I gave it the boot.
Hope this helps and best wishes on the road ahead!
Take Care,
Heidi
I dont know what to do!! All I am doing is crying….I have a j pouch and I am miserable, but i had trouble with the ileostomy too (I have Medicaid coverage only, which doesn’t provide good coverage for products) I just wanted to tell someone…also considering Humera or Remicade, too
So sorry to hear you are having such a rough time. I hope you can find some way to get your quality of life back whether it is to try some medications or go back to the ileostomy. Hopefully your doctor is helping you out and providing guidance on your treatment choices. I am not sure if you had a loop ileostomy before your j-pouch, but I have heard they are harder to manage than a nicely protruding end ileostomy. Maybe you would have better luck the second time around with a permanent stoma. As far as affording ostomy supplies… that is a tough one. Some of the supply companies do have patient assistance programs. Try calling Hollister, Convatec and Coloplast to see what they offer. I hope things get better for you soon!
Hi Heidi, I want to thank you for all you do to help support other people going through this tough time. I’m about 2 weeks away from my takedown surgery for my J pouch surgery and I’m still undecided as to if that is the route I want to go. A little over a year ago, I had emergency surgery to remove my colon because of how sick I was from ulcerative colitis. My surgeon told me that I needed J pouch surgery. I was not given the choice of a permanent ileostomy. I have had my loop ileostomy for a year, and in that time, have hiked on the Colorado Trail, swam in the ocean, and gone on a cruise. Even so, I was so sick and weak that it has been an uphill battle and I am still only have only 80% endurance from what I used to have and am still much weaker. I have two small children and want to travel and experience life with them.I am trying to be positive about my upcoming takedown surgery, but I am very scared as I do not want to revert to a lifewhere I am tied to the bathroom again.I don’t think anyone would choose to have an ostomy if they had the choice to have a regular colon, and although there are times that I wish I did not have a bag, I do not believe I have a strong negative visceral reaction to it like some do. My husband has been awesome and supportive. My dilemma is now that if I stay with my ileostomy, I stay with a loop ileostomy forever and I have a disconnected jpouch left in me forever. I have not found anyone yet online or in groups that has lived in the situation.I do not want to choose to keep the loop ileostomy with the disconnected j-pouch and then have trouble with the J pouch in the future from staying inside. I know that I want to be able to hike, boat, ride roller coasters. We spend time on the lake for an entire week during the summer and are out on the lake for 8 hours at a time. I am not sure how the ostomy bag would hold up being wet for that long. Do you have any experience with that? I believe my decision is a little tougher in that I have had a good loop ileostomy, which I am very grateful for. But because of this, it does not make me run towards a jpouch either. I have been trying to listen to that inner voice, but I feel so conflicted. I do not feel I have a strong sense of which way to go and my surgery is two weeks away. Others have said to just push the surgery off, but I am already over a year from my first surgery and do not want my muscles to continue to get weaker for the J pouch and I also need to be able to return to work soon. And frankly, I need the weight of the decision off my shoulders. In talking with others, have you run into anybody in my situation? I really appreciate the time you give to others and trying to help them through these situations. Maybe we’ll run into each other on the trail someday :-).
Hi Laura,
Thanks so much for sharing your story. That is a tough decision. It seems like when surgeries are truly an emergency and a patient doesn’t have the time or ability to research options and provide their input, surgeons usually do things so that the possibility of a re-connection remains. Maybe that is why your surgeon didn’t talk much about the permanent ostomy.
Since then, have you been able to talk to your surgeon about your reservations and get their opinion on the options if you wanted to have a permanent ostomy at this point? Maybe they don’t know that you even have an interest in going the permanent route. I think some doctors might assume that no one could possibly want an ostomy forever. I had to have a couple real heart-to-heart conversations with my doctors about why I thought that option was the best for me.
I don’t know anyone who has stopped after the 2nd step and left their j-pouch in place indefinitely while still having an ostomy, but that doesn’t mean it doesn’t happen. I do know people who have made it through the first step and then decided to just keep their ostomy and not go for the j-pouch. Some have then opted to have their anus and rectum removed/ sewn up later in another surgery.
I also know people who have gone through all three steps, lived with their j-pouch a while, had issues and then went to a permanent ostomy. They have had good outcomes, but it was more surgery to go through.
In addition, I have met people who love their j-pouches and have no troubles. Others have a few issues but feel they are totally worth it to not have a ostomy pouch.
It is such a personal decision. Maybe since you are conflicted, you do need a little more time to decide. I know the decision is hanging over your head, but since there isn’t an absolute deadline for the j-pouch surgery, you really want to make sure you feel good about your choice. Could it hurt to postpone the surgery just a few weeks and have another consult with your surgeon? Talking to your surgeon might help you at least know what the possibilities are. It sounds like you have searched some online forums for others in your situation. I would suggest keeping that up. Did you try jpouch.org? I did a little search myself and found this thread on the UOAA forum but it is an oldie:
https://www.uoaa.org/forum/viewtopic.php?f=8&t=4908
As I mentioned in my post… my choice really came down to the option that I thought would most predictably get me back to doing the things I loved in the least amount of time and with what I felt was an appropriate amount of risk for me. The way everyone assesses those things is going to be very different. Gotta go with your heart and hope for the best:)
As far as the swimming question– though I haven’t spent 8-hours non-stop in the water, I have spent a day at the pool where I have gone in and out numerous times. I routinely go for hour-long swims followed by soaks in the hot tub. Even went water skiing this summer and fell hard a lot of times– no problem with my appliance staying on at all. I don’t even have to put any extra reinforcements on my wafer… I just jump in, towel dry my wafer off afterwards and am good to go. However, a lot of people use Sur-seals or Coloplast Elastic Barrier strips to picture-frame their wafers. I might do that if I was going to spend hours and hours in the water. Worsy case, if you spent a lot of time in the water you might have to do an extra change in the evening but it doesn’t seem like that would be a big deal.
Nice job on doing part of the Colorado Trail with your ostomy! I would love to hike a big section of that someday.
Hope this helps and happy holiday!!! Please let me know if you have more questions.
Cheers,
Heidi
Hi Heidi
Great to read your post, it is most informative and inspiring. I am in the process of trying to decide, j pouch or permanent stoma. No drugs have really worked and have been a prisoner in my bedroom through fatigue and the toilet for almost two years. I live for the the outdoors, skiing, skydiving, scuba diving, motorbikes, horses, etc. and used to be superfit, never drank, smoked, no drugs, vegetarian, trained everyday etc. I know skiing is perfectly possible as is skydiving with a stoma, but was saddened I wouldn’t be able to scuba ever again with a stoma. I read one of you posts above that you swim and even do Hot tub. If I could scuba and do hot tubs after my skiing I will be delighted. Can you tell me what you do, and what you have discovered regarding getting your stoma in the water and hot tub for long periods of time. And what special equipment you might use.
Thank you so much Heidi, and good luck with everything.
Much love
Alexander. xxx
Hi Alexander,
Glad you found the post helpful. I have never been scuba diving, but definitely have heard of other people with ostomies going. There was actually an article in the June 2012 Phoenix ostomy magazine about a person with an ostomy (urostomy in this case) who scuba dives. You may want to check that issue out. They have online versions that can be purchased.
http://www.phoenixuoaa.org/ostomy-magazines/electronic-editions/june-2012-issue
Another suggestion would be to post on the United Ostomy Associations of America (UOAA) ostomy forum to see if anyone has experience with scuba diving with an ostomy.
https://www.uoaa.org/forum/viewforum.php?f=2&sid=c7b39332f3c189934147254de6ebd8d0
As you mentioned, I do love going swimming. I frequently go for hour-long lap swims at the pool followed by a 15-20 minute soak in the hot-tub. I don’t get out of the hot tub due to my ostomy. I usually start to overheat! I am sure my appliance could handle more. I have also spent long times at the pool or waterpark where I get in and out of the water. I am not sure what my total water time is on those days, but again, my appliance sticks through it all just fine.
I don’t make any adjustments to my appliance at all. I just jump right in the water and then let my appliance air dry afterwards. Sometimes I put a cotton pouch cover on after a swim which helps soak up some of the water and allows the pouch to dry faster.
I wear a Convatec Sur-fit Natura Durahesive wafers (the square or oval part that sticks to your skin) and those things stick to me like super-glue. When I wore Coloplast brand wafers, they did peel up a little more in the water so a lot of it depends on which appliance you use, how it interacts with your skin etc. It is different for everyone. I know someone who is an avid surfer who wears Coloplast and they never peel off. You just have to experiment to see with what works best for your body.
None of that really matters much though because even if you end up using an appliance brand that peels up a little, there are products you can add to the edges of your wafer to hold them down and make them even more waterproof. I have heard that Coloplast Elastic Barrier Strips, Active Life Products (ALP) Sure Seals, and HY-Tape Original Pink Tape all work well for this purpose. If I was planning on doing something like scuba diving where I wanted to have the most confidence that may appliance would stay put, I would add those around my wafer.
Swimming does not affect my appliance wear-time. I have to change my appliance every 3-4 days whether I swim or not. However, if I was spending extended amounts of time in the water (especially salt water), I might have an extra appliance on hand just in case I wanted to do an extra change in the evening afterwards. I have never had an appliance leak on a swim (or any sport activity) but it is better to be safe and have an extra along.
Other than that, I always make sure to empty my pouch of gas and output (poop) before going swimming. Of course, output still keeps coming out of my stoma the whole time I am swimming, but at least my pouch doesn’t get over-full. Unless I have a stomach bug or have crazy-high output for some random reason (which doesn’t happen often), I can go 4-6 hours between empties so that is plenty of time to swim (and go scuba diving I imagine.)
If you go in for a surgery consult, make sure to tell the surgeon about all your sports. They may have some thoughts on what would be safe or if there are any special things you need to do related to having an ostomy and scuba diving. They may also be able to give you some honest ideas about how a j-pouch or ostomy might work with that particular sport.
You are right. Skiing is no problem at all!!! I have gone countless times since surgery and my ostomy works really well with the sport. In fact, my ostomy works well with all of my favorite sports. It is actually pretty cool to have complete control (for the most part) of when you go the bathroom. No more uncomfortable urges or having to hold it!
Hope some of this helps. Best wishes with your decision!
-Heidi
Thank you so very much Heidi. You have given me more wonderland info than my surgeon or the stoma nurse! You really have removed my doubts about a permanent ileostomy.
I live in London England, if you with husband ever visit, let me know and I’d love to show you guys around the best places and buy you dinner.
Kind regards
Alex.
I loved reading this as it really mirrored my own thoughts about my ileostomy. I always had diarrhea predominant colitis, so by the time I had my surgery I was sprinting to the bathroom multiple times a day and often not making it. After seeing how liquid my ostomy output continues to be I can’t imagine that a jpouch would be able to hold much, so I’d be back to having to monitor the location of restrooms constantly. I’m only three months into having my bag, but I really enjoy the ability to go several hours without having to think about where the bathroom is. And maybe it’s because like you I’m 40, but having the bag doesn’t really affect my body image. I’m not in a relationship right now, but I honestly don’t think it will be that big a deal the next time I am. I don’t love the process of removing my wafer and putting a new one on, but I don’t find emptying the pouch to be any problem at all. It seems like having the bag gives me back a lot more of my life than it takes away. I’m also really heartened by stories from you and other ostomates that show that there’s almost no limit to what I’ll be able to do with my bag on.
Hi Molly,
Thanks for writing. I am glad to hear that things are going well after surgery. As the months pass, you will likely find that it gets even easier. Though my output is still pretty liquidy, it definitely thickened up a little bit at around 6 months when my small intestine adapted to life without its big brother colon:) I am like you in that my least favorite part of having my ostomy is doing wafer changes. My skin is fickle so it takes me a while to get layers of supplies on to protect my parastomal area and sometimes I get tired of waking up at 5 a.m. twice week to change my appliance and still make it to work on time. However, I agree that those are minor inconveniences compared to being sick and having to run to the bathroom all the time. Overall I love my ostomy and the life it has given back to me.
Keep up the wonderful attitude! You will be able to do anything you set your mind on with your ostomy.
Take Care,
Heidi
Hey. I came across your wonderful blog today and I immediately felt as though I had been drawn to your words of wisdom, particularly your thoughts on the ‘inner voice’. I have done a fair bit of research myself and the stoma nurse had put me in touch with a j-pouch patient who, from his own admittance, had been through an horrendous time. I appreciate that this is definitely not typical of the consequences of this type of surgery, but I couldn’t help but think that a little bird was telling me that I should steer clear of the j-pouch option. I am 46 years old next week and have a very boisterous 4 year old who keeps me honest. I was also diagnosed with CD in 1984 and now recently re-diagnosed with UC and a recent colonoscopy found evidence of low grade displacia. Have been wracking my brains with which option to go for but my inner voice has already decided for me!
My health (despite having little energy) has actually been very good over the years, and apart from the odd unpleasant flare up I have been very fortunate up until now of living a relatively normal existence. On that basis, I felt that the risks to my status quo from the potential aftermath of a j-pouch (and frequent troops to the consultant) would be a step backward for me and I wanted to feel as ‘normal’ as possible after the surgery (terms & conditions apply!)
I just wanted to say thank you for your lovely sincere and uplifting blog and to wish you the best of everything (and continued good health!) for the future. John from Plymouth in UK.
Hi John,
You are welcome! I am so glad you found the post helpful. I too had led a fairly normal existence before my final severe UC flare-up. Sure, I definitely experienced some rough flare-ups during my ten years with UC and had urgency issues during those times and even some accidents. The pain could be bad at times. However, for the most part UC didn’t interfere with my life that much… I worked full-time, I traveled, I did all the sports I loved. When I ended up in a very severe flare and found myself facing surgery, I was afraid I wouldn’t be happy with the “normal” the j-pouch achieved and thought I could better manage with a ostomy. I am so happy with my choice!!! Everything turned out exactly as I had hoped. Listening to that inner voice is so important– especially since others may try to influence your decision or make you second-guess yourself. It is your body and only you know what is best for your lifestyle.
If you do choose to go the permanent route, there are two things that can make an ostomy much more manageable. One is a good stoma placement that works well with your clothing and sports equipment. A stoma nurse will help with placement prior to your surgery so make sure to wear your favorite jeans (I also brought my harness and backpack to make sure those worked well with my placement) to that appointment.
The other important thing is to aim to get a stoma that sticks out a few centimeters with a good spout will help direct stool towards the bottom of your pouch. Stomas that are too short or flush with the skin can end up pumping stool under the wafer (the part of the ostomy appliance that adheres to your skin.) This causes leaks, skin irritation and can keep a pouch from adhering well. Talk to your surgeon about this before the surgery. Of course, a surgeon could do everything perfectly and your stoma could still retract and end up shorter. However, I figured it couldn’t hurt to at least ask my surgeon about stoma length. He assured me he would try to make a great one (and he did!) My stoma is about 4 cm long and functions perfectly. I have only had a two very minor leaks in the five years since surgery and I think part of that is due to having a well crafted stoma of a good length.
I hope some of this helps! Best wishes as you prepare for surgery!
Cheers,
Heidi
G’Day
Thank you for this excellent post and your blog.
I am 66 in a couple of weeks and have had recurring ulcerative colitis for the last three years or so. (First diagnosed in 1992 and ok from abt 1993 to 2013)
I have been on all the step up medication options and now trialing biologics. None have improved my current symptoms so I am pushing for elective surgery.
Like yourself, in some ways, I have enjoyed the outdoor life, camping, flying hobbies etc with my family (wife and six children)
I would dearly love to do similar things with my 11 grandchildren (6 weeks – 16 years old) again as I have been out of the loop for the past three years or so.
Like so many others, I guess, I have researched the surgery options for some time now and am sure it is the best option for me.
Reading your post was like thinking out loud for me and has cemented my resolve to opt for a permanent ileostomy.
I would sincerely like to thank you for these frank and honest comments on your thoughts and wish you continued good health and happiness in whatever you choose to do.
Phillip
Central Victoria, Australia
Hi Phillip,
Thanks for writing and sharing your story with me. I am glad the post was helpful. When I was looking for info on surgery when I was trying to make my decision, it was sometimes hard to find perspectives written by people who wanted to go for a permanent ostomy from the get go (skipping the option to reconnect). However, it is such a good option for getting one’s quality of life back. I am so happy with my decision to have a permanent ostomy. I can’t believe it has already been almost six years! Yes– recovery can be very tough immediately following surgery, and there is a steep learning curve for finding out how to manage an ostomy, but once I got my systems down and figured out which supplies worked best for me, life returned to a wonderful normal. I can do all my favorite activities with my ostomy and I feel healthy. That was not the case with UC. It is great to not be on all those drugs too!
Best wishes for your surgery and here’s to many fun future trips with your grandchildren! Please let me know if you have questions. I am happy to help!
Cheers,
Heidi
What an insightful page this is, it’s helped me with the inevitable choice of ileostomy or J pouch. I have FAP and have had a total colectomy 23 years ago to prevent cancer. I had been due next month for the next step in life having a J Pouch but complications have occurred with kidney stones likely caused by years of chronic diarrhea as my small bowel never really adjusted that well and has led to a life dominated by planning around toilets and how long I can go without one, a good day is four hours, a bad day is it don’t leave the house. Imedium helps but it’s not a miracle cure. Now I’ve got a little more time to consider what way to go I’m seriously considering a perminent ileostomy, I can’t imagine the freedom I might get without being restricted by bowel movements. I could happily go out for hours, finally got to festivals and explore the countryside etc etc. The stories and peoples experiances reassures me that an ileostomy is an equal if not superior choice for quality of life and for ones dignity.
Hi Evan,
I am so glad the post was helpful for you! Deciding on what type of surgery to pursue is such a personal decision. It is great that you are doing your research and looking at the options that you feel will be best for your lifestyle.
For me– I have absolutely no regrets about my decision. In November, I will have had my permanent ileostomy for seven years. Other than having an altered digestive system and having to manage my ostomy which involves about six empties a day (completely at my convenience… I could wait an hour or two or more in many cases) and twice-a-week appliance changes, my life is pretty much back to the way it was before surgery or being sick with ulcerative colitis. I feel healthy and I am able to do everything I did pre-surgery. In fact, the reason I have been writing on my blog so little is that life is back to being busy with my full-time job and heading out on fun adventures almost every weekend!
Wishing you the best with your decision!
-Heidi
I just found this site by chance and I wanted to offer my experience with choosing the ileostomy over the j-pouch to add to your experience because I think everybody facing the prospect of having this surgery should hear about the experiences from those who have gone through it themselves.
I was diagnosed with UC in 2004 at the age of 21. I can’t even begin to describe the severity of my flares. I still remember those dark days from 2004-2010 vividly and I never want to relive that memory again. UC isn’t life-threatening but it will literally put your life on hold for as long as you are sick because you cannot do anything despite your best efforts. Your mind is completely healthy and free but your mind and body will not cooperate. With UC or at least a bad flare, you are essentially a prisoner inside your own body; it’s a terrible feeling. Looking back, I really have no memories of my early to mid 20’s other than the hospital stays. I really missed out on that part of my life but hell I made up for it in my late 20’s and early 30’s!
I had a flare from 2008-2010. Yes, I was sick with a flare for about 18 months actually from August 2008 – March 2010 at which time I was literally begging to get my colon removed because I was bed-ridden for the last six months. I had the surgery done at one of the top places in the country in NYC and I knew right away, from having UC since I was 21, that I was going with the ileostomy even though my surgeon was encouraging me to get a reversal after six months. It’s easy for him to do the surgery but I was the one who was going to have to live with it and my research was telling me to avoid the additional surgery.
It’s been almost 10 years now and I have no regrets about that decision. I have never had an issue with the ileostomy appliance and I have probably done more things in my life with it than I did prior to having it. The reason I decided not get the j-pouch was because the decision to have a j-pouch is ultimately purely cosmetic in nature. It’s not like you will have less frequency with a j-pouch than with the appliance. Beyond that, the j-pouch is at risk for future inflammation which can bring about UC-like symptoms all over again and more medication. I wasn’t sold on a j-pouch 15 years ago when I was first diagnosed, I wasn’t sold on it 10 years ago when I had the surgery, and I’m still not sold on it today, almost 10 years after having the surgery even though I still have the rectal stump in place.
I could write a small book on my experience with a lot of details about my journey but I will tell you the only issue I have right now the ileostomy, as a man, is that I can’t wear tight fitting shirts because you can see the bulge from the appliance on my right side and that’s only because I am no longer a young man with a flat stomach. I find myself wearing more untucked shirts and generally trying to dress in a few layers as opposed to wearing t-shirts alone like I used to. Seriously, that’s my only complaint with the ileostomy and it has to do with wardrobe selection and I can probably get rid of that issue if I lose about 10-15 pounds and get some liposuction in that area to remove the remaining, stubborn subcutaneous fat which would make my abdominal area completely flat again.
I have never had an issue with the functionality of the ileostomy and they did a really good job with my surgery because I elected for open-surgery and I have a tiny stoma and a very small abdominal incision below my naval so I don’t even have the scars you would expect from a surgery like this. Honestly, the surgery wasn’t even painful. I thought I would be facing excruciating pain but it was nothing like I was expecting. I had a morphine injector for maybe four days and then I really just felt soreness in that area. No pain though, and once they took me off the morphine, I refused the pain pills because I didn’t need them. Keep in mind, I was VERY SICK when I had the surgery and I would say I was back to my old self within a few months and back to 100% 5-6 months after the surgery and have had ZERO complications 10 almost 10 years out.
As far as the ileostomy and the output and emptying frequency, I have learned so many tricks on how to control and manipulate those issues that I have effectively been able to control the incontinent nature of the stoma. I have never woken up in the middle of the night to empty the appliance and the only thing I can’t do is sleep on my stomach. With a j-pouch you will GUARANTEED wake up at night to empty it and I can’t see how anybody could function with a disrupted sleep schedule in the long term.
If anyone asked me about either option, I would advise against the j-pouch since it uses a chunk of your small bowel to construct the pouch and should the pouch fail over time, that section of healthy intestine would need to be removed which could possible lead to short-gut syndrome which is just another headache. So instead of one surgery, you are looking at three surgeries or more and nobody wants more surgery. I’m just happy with the one surgery and one recovery and being able to put UC behind me.
Beyond all of that, I don’t think they will be finding a cure for inflammatory bowel disease anytime soon since I haven’t seen much progress in the last 10 or so years and some of the “experts” I had consults with really didn’t offer anything new that the “non-expert” docs were offering me. If anything, they are improving ostomy appliances each and every year and there are A LOT of options out there with features you probably didn’t even know existed. I’m happy with the appliance system I use now and I change it around every 7-10 days and I can do it in less than 60 seconds after my shower. I can count a total of five or so instances in the last decade where I compromised the appliance and had to change it because of a small tear but in all of those instances I never had a leak and I was able to change it discretely since I always travel with a change of my supplies. In all of those instances, I was either making sudden movements where the bag just got a tiny tear where the material meets the O-ring. I have learned from all of those instances and I have not had any issues that I can remember as of late.
Whatever you choose to do, just realize that we might have been dealt this disease but at least we got a disease that we can eventually put behind us and move on with our lives. There are some people that are not as lucky as we are. Pick the surgery that ultimately helps you best move on with your life. The stoma was for me but the j-pouch might very well be for you. Just be educated on the pros and cons of both.