My name is Heidi Skiba, I’m 40 years old, and this blog chronicles my return to the world of outdoor adventures with a permanent ileostomy.
Check out my quick intro video if you’re new to Ostomy Outdoors.
You can also read my very first blog post from 2011.
Finally, I’m both humbled and happy to announce that I received the “Best Kept Secret” Health Activist Award in 2012 from the WEGO Health blog. How cool!
Boy, does your story bring back memories! I too, fought a battle, albeit a brief one with UC that resulted in the loss of my colon and a permanent ileostomy. I was 40, had three young children and thought the days of active life and being able to parent well were over. The ostomy gave me back my life. My life, too, is active and healthy. The ostomy goes where I go and does what I do and hasn’t slowed me down. At 50, I work at a state park, live on a farm and love the outdoors.
I look forward to reading more of your adventures!
dawn
Dawn, so glad to hear that your surgery hasn’t stopped you from doing the things you love. I work at a park too! I am a naturalist and lead nature hikes and programs for school groups and the public. I love my job, and my ostomy has caused absolutely no problems for me at work. Glad you like the site!
I love your story!! Thanks for sharing. I have a colostomy and a urostomy. I will be 56 next month and I have had the colostomy since I was 21 and the urostomy since I was 10. My husband and I love camping, hiking and Kayaking. I can’t imagine what it must have been like to be 4 with 3 young children going through what you went through. Your story is very encouraging. Thank you!!!!!
** I meant “40″ not “4″
I had a horrible bout of UC when I turned 24. It came out of no-where. 8 weeks later I was in the hospital with toxic megacolon and close to death. I gladly accepted a permanent ileostomy – no way was I leaving my 3 year old daughter. That was 31 years ago. Since then, I have lived overseas, graduated with a Master’s Degree in education, traveled, hiked, camped and LIVED!! I even found a man that was willing (and still does) to love me for who I am 3 months after I got out of the hospital. I have the normal ups and downs that life offers – nothing ostomy related. Good luck and be well!
MJC, it must have been difficult to face surgery so unexpectedly, but isn’t it amazing how an ostomy can give you your life back! I am incredibly thankful for my surgery every day. A lot of aspects of having a stoma still feel so new to me, but I will figure everything out in time. Your list of post-surgery accomplishments is inspiring and a good reminder that I will be able to lead a full life with my ileostomy.
You will blossom with well-being. An ileostomy can be a challenge to manage at first, but it becomes second nature and just a part of the package of life we are dealt. There are so many other worse challenges people live through and with – I have always considered having an ileostomy, not such a bad deal. Drink your liquids, eat foods with potassium, and be aware of potential hernia-producing situations. I don’t have one – but some ostomates get them –
Mady
Great story!! Very encouraging to a fellow ostomate!!! I found a man that loves me inspite of my physical problems.
Hello. I am the poohbear who recently left a comment on your latest video. I love your site and your videos. I have some questions regarding preparation for surgery and dealing with the changes after surgery. Any chance I could get in contact with you via email? Thank you for being so open about your life with an ostomy. You are a great encouragement.
Mike
Hi Mike,
Yes! Feel free to contact me by email at any time at ostomyoutdoors@gmail.com. I know how scary facing surgery is. I would be happy to help and answer any questions you have.
Cheers,
Heidi
Thank you for your site!!! I am enjoying it and I think it will help me come out of my shell. By “shell” I mean that I don’t ever let anyone know about my physical differences. Thank you very much!!!
Cheryl,
Thank you for this comment. It means a lot! When I had Ulcerative Colitis, I hardly told anyone about it. It was the same with my ostomy at first. But soon, I realized that being more open not only helped me process and deal with the experience, but also others who were going through the same thing. When I was preparing for surgery, I was so thankful for the people who shared their stories with me. I decided that it was important for me to do the same. Through all this, I have developed a big passion for showing others what is possible after surgery. I am so glad that you are feeling more comfortable with the possibility of sharing more of your own ostomy story with others.
-Heidi
Heidi,
Thank you so much for the encouragement!!! I am thankful you ARE sharing your story, especially to help others. I have started putting this info on my FB page and I felt so much freedom when I did. It was as if I had a load lifted off of me. A person wouldn’t think that something like that could cause so much pressure and that it could be relieved by simply telling their story. Again, thank you so much!!!
Cheryl
Very inspirational! Thank-you! I had made a choice almost 7 years ago for surgery towards the j-pouch as I had been diagnosed with uc backed by genetic testing, clinical tests, and pathology. In the hospital, 5 days after surgery, I was told it now looked “inderminant” . It may be crohn’s so I wasn’t a candidate for the the surgery andi should get used to the bag. At home, after waves of sudden intense sadness, I felt I had to go to my happy place. I hadn’t worked out seriously in nearly 20 years ( I had surgery at age 45) . I knew I had to go where I was most happy, being physically active and looking strong. I had been 210lbs before getting sick, had surgery at 170 lbs, came home from the hospital at155 lbs. 8 weeks after surgery I returned to work, with the bag, at 180 lbs, working full hours, no restrictions, as a ups driver. In 2 weeks, I’m finally having the rest of the surgery to make the ileostomy permanent. I understand I won’t be able to sit down for 2 weeks or more, won’t be able to work out for 4 weeks or more, but new it was time to leave that position of temp ileostomy and the inconvenience of a wet rear end. Strangely, having doubts in the last week. After I read many of your posts, I am able to reconnect with the strength of the decision to move forward. Thank- you again. Ken
Hi Ken,
I am glad my site has made you feel better about your upcoming surgery. It sounds like you already know how full of a life you can lead with an ostomy. I think it is natural to be intimidated by the permanence of it all, but it sounds like the temporary situation isn’t that comfortable for you. I bet it will give you some peace of mind to finally have this surgery done. I sure like never having to have a wet rear:)
Because I decided I wanted a permanent ileostomy from the get go, I had everything done in the rear area with the original operation. Surprisingly, I didn’t find that incision to be that painful. I had staples back there and could still sit okay… I sort of leaned on one cheek but it wasn’t too bad. It healed wonderfully. It itched a bit, and I had some deep mild pain that lasted for a while, but nothing major. I know some people have issues with healing this area, but I never did. My body decided to be stubborn with my abdominal incision instead:)
Best of luck and let me know if you have any more questions.
-Heidi
Thanks for responding so quick. My surgery is tomorrow morning and other than seing the wrong surgery listed on my forms as I was couriered around during a pre-op meet and greet, insert gasp here, I’m all ready. I saw your ab exercise post and I agree it’s hard to be specific about advising which exercises to do for others. When I had my sub-total and ileostomy done 7 years ago, I stumbled upon an article which guided me. It was next to impossible to find anything online and I was worried with too much, too little thoughts. My wife had left a magazine out on a table which had a feature on exercises after a c-section birth and I used that as my guide. So I was doing pelvic lifts, single leg raises, crunches with my legs resting up on a chair, and side push ups/bends which kinda look like your side plank. I may have only been able to do 1-5 of any of these at start but I would do them a few times a day and my body responded quickly. In 2 weeks, I was doing 15-50 of each of these a few times a day. I still incorporate these into my exercises as keeping a strong core is key in able to stay active.
Ken
Hi Ken,
I hope your surgery went well. That is crazy about the wrong surgery on the form. I guess it always pays to double check!
You are right… I have been pleasantly surprised at how quickly my body is responding to the core exercises.. even in 5 short days. I was really sore the day after, but now I am already finding that the exercises are easier, and that I am able to bump up the reps or holding time. Can’t wait to see where I will be with the exercises in a few months.
Wishing you the best in healing!
-Heidi
Heidi,
Great info as always. You are a very dedicated contributor to the virtual world of ostomies and I’ve enjoyed learning through your experiences. I had my permanent ileostomy 1/12/12. I have been convalescing over the last couple months. Recently, I have been feeling well enough to push my activity levels…some light hikes (2-3 thousand feet climbs of elevation of mixed trails/rocks) followed by weight training. I’ve noticed that I am having increased stoma noises (farts) recently and I can’t seem to attribute it to dietary causes. My impression (and medical back ground, I am an orthopedic surgeon) tell me that because of the engagement of the abdominal muscles where the small intestine was pulled through the abdominal wall is likely creating increased pressure or compression at the emerging small intestine. Have you had this experience? If so, any suggestions? Will this get better with time?
I am planning to get up to the mountains at the end of the month. We have a house in Lake Tahoe. It will be the first time back on the slopes since surgery. Skiing/boarding a little over 2 months post op, not too bad? Do you think this is a good idea? I will be taking it easy, skiing pretty conservatively.
I am holding on to my rerelease to the ocean to get back to surfing. In a past life, I surfed semiprofessionally prior to medical school. I am going to wait till late spring/early summer before I really push the abdominal muscles and surgical site in the water. I have started swimming already without problems.
Tom
Hi Tom,
Glad the site has been helpful! Sounds like things are going well for you after surgery and that you are getting back into your favorite activities. Way to go!
I have not noticed my stoma to be any more vocal once I started working my core muscles (my stoma is already pretty noisy ha ha), but your reasoning about the increased pressure sounds like it could be a possibility. I have recently started to do a lot more focused core work and have been curiously wondering if my stoma would get pinched by having tighter abs so your comment about this is very timely. Wish I knew more. Maybe someone else will chime in.
Interestingly, a colorectal surgeon spoke at our ostomy association meeting last week and said that good core muscle tone is a beneficial thing as it can help prevent parastomal hernias by keeping the muscle tissue around the stoma stronger and less likely to tear. The trick is knowing when your body is ready to strengthen those muscles and then approaching it conservatively with the right types of exercises. For instance… he said dead lifts were not the best but gentle core work on a stability ball, yoga and pilates would be appropriate after one is fully healed and ready for these types of exercises.
The timing question for getting back into skiing is difficult to answer, as it sounds like my healing progression was so much different than yours. I had mid-line incision healing complications and had to go back for a couple of surgeries on that incision… one two weeks after my initial operation and another at two months post-op. Due to this, my surgeon was conservative in his recommendations of what I could do fitness-wise in the first 4 months. I went back to work at 8 weeks, but was still in a fair deal of pain, could barely walk 1/4 mile, and had some lifting restrictions throughout that 4 month time period. At 5 months, when my incision had finally healed, I asked my surgeon if he thought it would be okay to buy my ski season pass for the following year. He said, “what about this year?”, and proceeded to tell me that he thought I was ready to go boarding. I was ecstatic! He also said it would be fine to go backpacking with a load of 30 pounds. From there, he said to basically be smart and listen to my body. That suggestion served me well and it seems like easing my way back into activities in regards to mileage, intensity, weight of my pack etc. has served me well.
I would recommend asking your surgeon about the skiing just to make sure he thinks this is okay. He will know more about how your body is healing etc. Two months is still pretty early in the grand scheme of healing so I would be careful if you do decide to go. I did find my first day of boarding at five months to be a little tough on the abs just because the body positioning that was involved. When I had to rock up onto my board after sitting to put my boots into my bindings, it was tough on the core. Skiing might be a little better in that regard so soon after surgery. I definitely wore (and still do) a Nu-Hope Flat Panel Cool Comfort hernia prevention belt just to give my incision and parastomal area some support. http://www.nu-hope.com/beltlit.pdf.
Overall, I think it is smart to be patient and ease into activities (as you are planning to do with the surfing). I decided to wait a year to rock climb due to its strenuous nature. I remember thinking that sounded like such a long time to wait, but it went by in a flash and now I am climbing strongly and injury-free (knock on wood!) because I waited until my body was ready and then progressed slowly. Swimming is great!!! It was the first regular exercise I did to gain strength once my incision healed. I still go about once a week.
Good luck and let me know how it goes!
Cheers,
Heidi
Heidi,
Thank you for sharing your journey with us. I am a 26 year colon cancer survivor with a permanent colostomy and like you, I don’t let being an ostomate define who I am or what I can do. I got your link from a member of a great online community, http://www.ostomy.inspire.com. We’d love you have you join, if you have time.
Be WELL and keep CHARGING life!
Randy
http://www.activeostomates.wordpress.com
Hi Randy,
Thank you for your comment and for letting me know about your blog. It is so great to see another site that shows the full life one can lead with an ostomy. I will add it to my links page. I do have an Inspire account and have occasionally posted there. Lately I have been so busy that I haven’t had a chance to get on the site much, but hope to become more active there in the future. Such a wonderful group of people!
Take Care,
Heidi
Thanks for having this blog showing that you still can have a full life with an ileostomy! My father recently had his bladder removed due to cancer. I was wondering if you had any suggestions for products that could withstand sweat. P.S. We live in Alabama so its very hot here!!
Hi Kayla, I’ll put in my 2 bits here. I don’t have an urostomy, I have an ileostomy. But at the ostomy association that meets monthly, people stand up and share their story and show samples of the products they use. Now, I didn’t take notes, so I can’t be specific, but 2 people with urostomy’s displayed a liner-like thing, a clear thin “2nd skin” that went on their skin, then the ostomy wafer/ bag. The price/per was high like $30 each (?) . So check with suppliers around you and check your insurance.
But, what I can tell you from experience, is apply to clean dry skin. I take off my wafer et al and shower, and after the warmer shower, dry the skin and apply the wafer. Since my skin is warm from the shower, the wafer bonds with my skin better. If ( or rather when) edges rise, I tape them down. A taped down edge will last longer than an edge curling up. But don’t wait to change. I usually change up every 7 days, but sometimes change at 4, sometimes at 10 days. Whatever it takes. Where I live, Manitoba Canada, it can stay above 85 with high humidity from may to August. Compounding that, I work for ups, wear dark brown, in a dark brown truck, and usually work 11 hour days. So I’m familiar with hot and sweaty. Clean dry skin when you apply the wafer is the key to a successful bond.
Hope this helps
Ken
Hi Kayla,
I am glad the blog has been helpful. Ken has some great suggestions. I haven’t had too many issues with sweat affecting the adherence of my wafers, but everyone is a bit different in this regard. After sampling products from all the major manufacturers, I found that the Convatec Durahesive wafers stuck to me the best while being active and sweating. I also really like Eakin Cohesive Seals. They are a putty-like ring that goes around the stoma under my wafer. The product swells and turtlenecks up around the stoma as output touches it. This protects parastomal skin really well. In the odd occasion that my wafers do peel up a bit from sweat, the Eakin always stays put and keeps the seal until I get to my next change. I change my appliance every 3-4 days (otherwise the skin right around my stoma tends to get irritated as output erodes the Eakin ring). Changing this often likely helps with wafer adherence as well. The adhesive lasts very well for 3-4 days, no matter how much I sweat.
Like Ken, I will also tape an edge down if it starts to peel up. This will keep it from getting caught on something and peeling up even more. Sometimes I will also heat up the peeled up edge with a blow dryer on low heat. I have found that this can reactivate the adhesive to some extent, and combined with tape, will allow it to stick again. Again, this is only if the edge is starting to peel up slightly. If the wafer is peeling off significantly, it should be removed and a fresh one put on.
I would recommend getting samples from a variety of suppliers and to experiment to see what works best for your dad.
Best wishes for your father as he heals up from surgery!
-Heidi
Glad I found your blog. I was wondering if I would ever be able to return to being active and healthy after my surgery on September 5, 2012. It wasn’t planned. I had been eating healthy for years, taking care of my body, and somehow this dreaded UC got me down quick. Before I knew it, just a little over a month after being told I may have UC, I was in the hospital so sick and weak I could barely talk. I listened as the doctor told my husband and son that in order to save my life, my colon had to come out. So here we are. Four months since surgery, thankful to be alive, but still trying to figure all this out. How do I eat healthy now? How do I begin excercising again? These are the main questions I am figuring out now after recovery. I LOVE raw fruits and veggies, salads, nuts, and high fiber foods like beans. However I think I love NOT getting a blockage more than I love those foods, so I am juicing my veggies and eating nut butters instead. Anyway, I find your blog encouraging on the physical aspect of things…….if you can do it, surely I can too! I look forward to a more active summer with my husband and son, hiking, biking, playing, whatever! Thanks for showing it IS possible, I CAN be a healthy ostomate! So I guess it’s time to get out of this “bathrobe” mentality and put down the cookies.
Rennie,
I am so sorry to hear about your situation. It must have been incredibly difficult to face surgery so soon after being diagnosed. But you are right… you are alive! And you can lead a very full life with an ostomy. There will be a time not so far away when all of this feels routine and you are a pro at managing your ostomy in all different situations:)
My first four months were very difficult too so hang in there. Things started to look up at 5 months when I could finally get out and do some of the activities I loved again. Still, I proceeded slowly. Just up the exercise a little at a time. Start with short hikes and before you know it you will be adding up the miles. Remember, there is no rush!
As far as food… remember that the lists of no-no foods are only guidelines. They COULD cause trouble, but they don’t for everybody. You really have to experiment. I remember I was terrified of eating nuts and raw veggies at first. My first post-surgery salad was made up of three lettuce leaves:) I ate two almonds and waited for trouble. Neither of these things caused me issues so I bumped up the amounts a little at a time. I soon realized I could eat 1/2 cup of almonds no problem and can eat a cereal-bowl-sized salad with carrots, green peppers, mushrooms, olives, cucumbers, broccoli and tomatoes with no issues whatsoever. I can eat two ears of corn and eat black beans all the time. I can eat popcorn too. In fact, I have yet to find any food that really causes me trouble as long as I chew it like crazy (so the nuts are the size of grains of sand and veggies are in tiny, tiny pieces), drink lots of water with it, and don’t go too overboard on the quantities. Mixing items helps me too. For instance, having a piece of bread with a salad. This seems to keep the the fibrous material from balling up in my digestive system. Again, this is just me and everyone is different. However, unless you try a food (a little at a time), you won’t know how it affects you and you could be eliminating it from your diet unnecessarily. Whatever you do though… do not eliminate cookies. Those are very important in everyone’s diet:)
Wishing you the best as you hit the trails and bike paths again!
Cheers,
Heidi