No Slowing Down for My Ostomy

Here are some clues that my schedule has become crazy busy lately:

  • This morning I tried to brush my teeth and put my socks on at the same time. It didn’t go well.
  • Dust bunnies are currently breeding out of control in all corners of my home. I am very glad they are peaceable creatures.
  • The two minutes it took for my oatmeal to cook one morning this week sounded like the perfect time to squeeze in some blogging.
  • I’ve seriously thought about putting on my running shoes while doing errands and chores to see if I can cut my time or get a personal best. I can fold a basket of laundry and put it away in five minutes. I am going for three.
  • I ate spaghetti with sauce from a jar for dinner three times this week.

It is hard not to over-schedule when I am feeling well. Everything sounds fun, and before I know it, I have filled my days with so many activities that I barely have time to sleep. I am still having hip pain, but it has lessened some. My orthopedist can’t find any cause other than a slightly deep hip socket joint that may be causing my bones to rub a bit. Regardless, he thinks it is something I will just have to live with. I can do that. My physical therapist is also working with me on hip alignment issues that could also be part of the problem. The good thing is that both of these individuals think it is fine to run and hike. Despite things hurting a little bit, I am thrilled to be out moving again and I am taking full advantage of every opportunity that presents itself. Doug and I have already gone on two three-day backpacking trips this month, and our summer is only getting started. Breed away dust bunnies… I am going to be ignoring you for a while.

Doug and I on top of Mt. Massive on our second backpacking trip of the season.

I remember wondering if I would ever be able have crazy hectic marathon-like days with an ostomy. Would I be able to manage it in a tight schedule? What about having enough time to empty? Could I eat at any hour of the day? This week was my busiest since surgery, and I am happy to report that insanely full days are completely possible with an ostomy.

On Saturday, I got up at 5 a.m. to go to City Park in Denver to run the Undy 5000. This is a run sponsored by the Colon Cancer Alliance. Proceeds from the race go to pay for colon cancer screenings for the underserved. We have been in the middle of a record heat wave in Colorado, and the high temperature for race day was 103 degrees. I tanked up on water, said hi to some of the people from my local ostomy association who were volunteering at the event, and headed for the start line. The heat was oppressive and I got nauseated during the run despite staying well hydrated. It was definitely not the day to push it, so I enjoyed a more leisurely pace and finished the run in roughly 31 minutes. Even with the heat, my ostomy appliance stuck fine. I indulged in some post-race treats and beverages, perused the booths and then headed home to take a shower and get on to the next activity of the day: a 9+ hour work day.

Showing off my undies in front of the inflatable colon at the Colon Cancer Alliance’s annual Denver Undy 5000.
Sporting my ostomy t-shirt from thegreatbowelmovement.org at the start line for the run.
Everyone gets in the spirit of the Undy 5000 by running in their underwear or other fun bum-related costumes.

Soon I was up in the foothills leading a Jr. Ranger event at one of the parks in the Open Space System where I work as a naturalist. I spent the next 4 hours in 90-degree heat running through a meadow helping youngsters catch insects and teaching about the amazing diversity of bug life in the park. After a quick sandwich-dinner and a practice music session with my coworkers, I told stories and played my guitar as part of an evening sing-a-long and storytelling program for the campers. When we finally packed everything up to head back to the trailhead, it was almost 10 p.m. I had gone full blast from roughly 5 a.m. until 10 p.m. and my ostomy did not slow me down one bit. The only thing that was challenging was staying hydrated, but I had brought a huge personal water container along to the park since there was no potable water there. I drank over 8 liters of water that day.

The next morning Doug and I were up early to head to a friend’s going away pool party. We swam for several hours in the morning and then had a delicious BBQ in the afternoon with burgers, brats and corn on the cob. (I am fortunate in that my ostomy tolerates possible problem foods well when I eat them in conservative amounts, chew a lot and drink plenty of water.) Later that evening we headed back to the pool. I had never been in the water for such a large percentage of a day since having surgery, but my wafer did just fine—even with numerous trips down the water slide and many cannonball jumps.

Doing laps on the water slide at my friend’s pool party.

The crazy week continued. Monday included a doctor’s appointment and an evening dinner with Doug’s parents. Tuesday was filled with work and then my local ostomy association meeting in the evening. I collapsed in bed at 11 p.m. only to get up at 4:30 a.m. for our local Bike to Work Day. It was another scorcher, but the temps weren’t too bad so early in the morning. I rode my bike 7 miles from my house into Golden, and then continued for another 6.5 miles up into the foothills to the park where I work. That part of the ride included 1,900 feet of elevation gain. That evening, I rode back home, ate dinner and went right to bed.

Arriving at my destination after 1,900’ feet of elevation gain during our local Bike to Work Day. My amazing coworkers left encouraging messages for me along my route.

As I type this, I am on the plane traveling to visit my parents for several days in Washington state. This wasn’t the aircraft Doug and I were scheduled to be on (and we certainly weren’t supposed to be in the first class section where we now sit). Our plane left Denver an hour late and we missed our connection to Seattle which also meant we missed the last flight to the small town of Walla Walla where Mom and Dad live. Suddenly life became a bit spontaneous as we had to completely rearrange our plans. The airline put us in first class for our next flight, gave us meal vouchers and are covering our lodging in Seattle until we can catch another flight to eastern Washington in the morning.

Through all these unexpected twists, I hardly even thought of my ostomy. My main curiosity was how my very first trip through airport security since surgery would be. I was fully expecting to have to say something about my ostomy to the TSA personnel. However, I didn’t mention it and went through the metal detector uneventfully like everyone else. I did get asked to run my baggage through the scanner again, but only because I failed to realize that I was supposed to remove my laptop from my luggage. Security didn’t even ask me about the scissors in my ostomy changing kit in my carry-on (which are allowed according to TSA because the blade is under 4 inches long). We shall see if Seattle airport security goes as smoothly with my ostomy.

Blogging while enjoying the surprise first-class seat assignment on the plane.

As soon as I get back home, I have four evenings after work to unpack from this trip and get my things ready for the next adventure: The Crohn’s and Colitis Foundation of America’s Camp Oasis where I will be volunteering for a week as a camp counselor for children ages 7-13.

Through all these activities, my ostomy has faded into the background. I change my appliance twice a week, empty when I need to, eat when it fits in (many times as late as 9 p.m.), and drink a lot of water in the heat. Other than that, I can honestly say I don’t think about it a whole lot and it is not an inconvenience in my life. The longer I have my ostomy, the more I realize how normal everything feels with it– even during the busiest of times and when dealing with last minute changes in plans.

As great as it has been doing so many fun things this month, I know I can’t keep this pace up indefinitely. The dust bunnies will start to haunt me, a personal best at the time it takes to clean the shower will suddenly not sound so cool, and I will want to pull a cookbook off the shelf and actually make something decent for dinner. I am craving lawn chair time with an iced tea and good book instead of a huge “to do” list of things to pack for the next race, bike ride or outdoor trip. My ostomy hasn’t slowed me down one bit, but I think it is time to put the brakes on myself. Well… after the climbing trip we just scheduled for the end of the month that is.

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15 thoughts on “No Slowing Down for My Ostomy

    1. I think you are right about camp being busy! I am going to try to get a lot of sleep this week in preparation. I hope I have at least some time to sneak away and change my appliance which I will have to do once during camp. I am still not that fast at it as the routine I do to keep my skin happy is a bit involved. I may have to simplify that week even if my skin takes a setback. Funny that I am probably nervous about the same things that any of the campers with ostomies are:)

      Looks like your son is doing great!

      -Heidi

  1. Wow, Heidi! What a bounce back. Where do you get the energy? I have it for 1-2 days at a time some weeks, but have a real challenge maintaining my weight — just can’t eat enough to replace what’s burned. And it doesn’t seem like you require much sleep. OK, I want what you’re taking! Big ride, 27 miles, 1900 ft. I’ll ride the downhill bits with you.

    May you continue the good bounce and get some new undies for the next Undie 5000.

    1. Hi Cary,

      I am fortunate in that my ileostomy has given me so much energy compared to when I had UC. I can remember being so exhausted all the time when I had the disease. Even when dealing with the joint pain issues I am having, I still have loads of energy. Still, I do require more sleep then I am getting and have gotten myself too deprived lately. I am starting to crash and know that I have to take better care of myself in that regard.I have already reserved the weekend after camp as my “do absolutely nothing and catch up on sleep” time. I am going to start attempting a pattern of doing a bigger trip every other weekend after that so I have time to recuperate in between. I need to take a break too so I can get some more videos out. I have footage for two right now, but haven’t had a day at home to work on them.

      I just have trouble saying no when a fun adventure presents itself. Always thinking of the amazing memories to be made. Plus, in the winter my work schedule changes and I only have one day a week off with Doug. I tend to grab the chance to do a lot of trips with him in the summer when we have more time off together.

      You definitely have a huge added challenge with the food issue. I can eat pretty much anything and do. I hope so much that you find something to help you get more calories. It is impossible to maintain energy on such low reserves.

      How fun it would have been to have you join me on the downhill. I actually get a little freaked out with the speed of that descent!

      Take Care,
      Heidi

  2. Heidi, thank you so much for writing your blog. I’m new to my permanent ileostomy (3 weeks). I developed severe UC symptoms with a few hospitalizations about 10 years ago now. I opted for the j-pouch surgery and unfortunately had chronic severe pouchitis regardless of all therapies. I’d always been afraid of the thought of the permanence of an ileostomy, and how it might affect me with my work in the military. My pouchitis finally got so bad that I didn’t want to keep going on living that way. I am so happy I found your blog and a few others to help convince me to move forward with the ileostomy. Ive had a few ugly complications the first week out, but am doing better. Even though I’m a physician I’m having some difficulty coming to grips with it(I still have a hard time looking at it) my wife and children have been very supportive- I used to love to lift weights and to run, but have been fairly debilitated the past few years, and still feel pretty weak after surgery. I’m cleared for no-impact cardio, but am not sure how I should approach it- afew questions: what do you use to protect your wafer when swimming? I’m trying some 3m waterproof tape, but it doesn’t seem to last long. Also, how do you secure your pouch when running or biking without developing chafing?

    1. Andre, your note caught my eye. I too am a physician with an ileostomy (June ’10), and being a doc certainly doesn’t make it all easier, esp the acceptance stage. Heidi has helped me tremendously and inspired me to blog about my ostomy experiences, which helps me deal with the aftermath. Heidi has graciously linked to my blog Rollin’ … under her Links tab. Get in touch sometime–I’m sure we have much to discuss.

    2. Andre,

      Hang in there. 3 weeks is still so early. I had complications for the first 4 months… mainly incision related but still very painful. I ended up having to go in for a couple more surgeries. When I was in the middle of it all, I wondered if I would ever get better. Even though I chose a permanent ileostomy, I still grieved the loss of colon pretty hard at first. Now when I think back on it, those difficult times seem like such a distant memory. You will get to that point too where you start to feel healthy again and will begin to accept (and perhaps even be thankful for) your ostomy. Just give it time.

      Also give yourself time to get back into exercising. I started with just walking. For the first 4 months, I could barely walk 1/4 mile, and I had some strict lifting restrictions due to my incision complications. I was weak not only from the surgery, but from the horrible UC flare that had led up to it. At 5 months, I improved immensely and my surgeon gave me the go ahead to go snowboarding. For everything else, he just said to listen to my body. Beyond snowboarding, I began to go on longer walks around my neighborhood and then hikes in nearby parks. Over a matter of months I worked up to longer hikes, then overnight backpacking trips and eventually multi-night ones. Around 7 months I started running. I went slowly at first and allowed myself to walk when I got tired. I gradually upped the miles and intensity. It took me a year to get back into rock climbing and I didn’t really start lifting weights again until a year and 3 months. I remember thinking that a year seemed like forever when I was waiting to gain strength to do those things, but that time went by in a flash. Set little attainable goals, but also remember to not put too much pressure on yourself. Be patient and listen to your body. Revel in the small accomplishments. You will get back to the bigger stuff eventually.

      To answer your specific questions- I don’t do anything with my wafer when I go swimming. The Convatec Durahesive ones I use stay put through anything without extra reinforcement. I do change every 3-4 days due to my output eroding the Eakin Seal and wafer right around my stoma. Because I change fairly often anyway, swimming and sweating don’t really affect my wear time. I used Coloplast wafers for a while after surgery (until they started to bug my skin) and they didn’t stick as well for me through swimming. I used to frame them with 3M Medipore tape, which my skin really likes. Though it isn’t technically waterproof, it stuck to me well when showering and swimming. A lot of people really like a product called Sure Seals for framing their wafer during runs and swims. You might give that a try if your wafer is peeling up.

      For pretty much all my activities, I wear a Nu Hope hernia prevention belt (I am pretty fearful of getting a hernia. I am also at a slightly higher risk for getting one because of my incision complications). Over my hernia prevention belt I usually wear a pair of Comfizz brand boxers or briefs. They hold my pouch and belt in place well. It seems like a lot of layers, but I find it comfortable. I also made some cotton covers that I put over my pouch. They absorb some sweat and also keep the corners of the pouch from chafing my leg when I exercise. There are several manufacturers that make pouch covers too.

      Hope this helps. Best wishes as you continue to heal and get back to the things you enjoy!

      Cheers,
      Heidi

  3. “Set little attainable goals, but also remember to not put too much pressure on yourself. Be patient and listen to your body. Revel in the small accomplishments. You will get back to the bigger stuff eventually.”

    This I really needed to read again. Thanks Heidi.

  4. Heidi and Cary, thank you for the encouragement and advice. Within a few days of my ileostomy, I developed a pulmonary embolism- within 48 hrs of discharge, I was readmitted with a small bowel obstruction, but thankfully only required a rubber hose in my nose for a few days and no surgery. Before the surgery hijacked my life, I had planned a vacation for my family and I in Hawaii. I stubbornly refused to cancel it, and have been mostly taking it easy- I probably overdid it today by snorkeling for a long time- I’m fairly sore, but don’t regret it at all- floating around amongst the fish and corals, I really didn’t give much thought to my stoma- thankfully the waterproof tape did its job- I’ve been using Holister wafers, and my output seems to erode through the peristomal part of the wafer within2-3 days and then leak. I look forward to each of your blog posts- I’m pretty down on myself right now, and fairly upset with my body image overall, and my inability to just function the way I think I typically should. I’ve read and been told by several folks that I need to be compassionate towards my body and the chronic pain issues, but I’m definitely having difficulty getting there. Thank you so much for helping me to understand that I’m not alone in this and that there are others out there leading productive lives and finding happiness.
    -Andre

  5. Wow Andre! Snorkeling so soon after surgery- you are a trooper! You are right though… getting back to the things you love helps one better accept the change. As soon as I knew it was safe to do an activity, I tried to jump back in before unwarranted fears or anxieties had a chance to build up and stop me. Sorry to hear about the complications. Hopefully all that is behind you and you can concentrate on healing!

    I would highly recommend putting an Eakin Cohesive Seal around your stoma and under your wafer. It provides a buffer to prevent leaks. My output would always erode the peristomal part of my wafer too before I used these. Now the output erodes the ring instead which buys me some time and protects that skin from output well. I change every 3-4 days now, the skin around my stoma looks great, and I never get leaks.

    Don’t be too hard on yourself about the down feelings. I had some anxiety and depression for the first 3 months post-op. It was all so overwhelming and there were immense changes to my body and lifestyle at first. As time went on though, I realized that these changes were not as big as I had thought initially. Once I healed, got used to managing my ostomy and returned to the things I loved, life felt wonderfully normal as it had in my pre-UC days. You will get to that point! Hang in there. It just takes time.

    -Heidi

    1. Heidi, thank you for the encouragement and advice- I’ll look into the Eakins seal and see if I can get them. Snorkeling was a blast- it hurt too much too use flippers, but luckily didn’t need to. We had so much fun that we wound up doing it a few times during our stay- golf turned out to be too much of a strain, but hope to attempt again soon. -Andre

  6. Hello,

    I am 14 years old and just got total colectomy with ileostomy 10 days back for refractory UC (diagnosed at age 6). Like you I am having a hard time coming to terms with it. But you guys are a source of encouragement. I have the following questions for you.
    1. What can I do to mask ‘Gas’ sounds when I am in class and it is all quiet (during exams) ?
    Please give me tips to handle it.
    2. How long would it take for me to get my appetite and strength back ? I was on TPN for 5 months prior to me electing for a colectomy ?
    3. What should I do when I really feel down about my colectomy and ileostomy ? Do you have any suggestions ?

    Anxious to hear from you all.

    1. Hi Seema,
      I’m sorry to hear about your troubles and wish for you to feel better again. My son had ileostomy at April after having UC for 7 years.
      Did you ever been at Gut Busters http://ibdcamp.org/new_design3/IBD-SITE/index.html or Oasic http://www.ccfa.org/get-involved/camp-oasis/ camps? If not, you should talk to your parents about these camps. They are both camps for kids with IBD. There you will find the best place to help you with your problem #3.
      My son also complained to the sounds from stoma during tests, but as far as I know he did not find a solution. If these sounds really bother you, you can ask your school administration to provide you a special place for your tests. Your condition make you eligible for a student disability which could be helpful for you at school.
      My son is a counselor at the camp Gut Busters, he can tell you more about the camp. Probably he can give you also suggestions of how to handle your ostomy issues.
      Let me know if you want to contact him. My e-mail is anna.shchemelinin@gmail.com

    2. Hi Seema,

      Thanks for writing! 10 days is so new. Don’t worry, things will get better as time goes on. I am much older than you, but hopefully these suggestions will help:

      1. I usually press my forearm over my stoma when it is noisy and it muffles the sound a bit. Sometimes I can predict when my stoma is going to get noisy just by the way it feels. I will feel a bit of pressure behind the stoma and that is when I know it is probably going to get noisy and I should put my arm over it. I also notice that my stoma has gotten a lot less gassy and noisy as time has gone on. Right after surgery it was really loud. After 6 months or so, it really quieted down. Now sometimes several days go by and it doesn’t make noise. It is the most noisy in the morning after I eat when my stomach has been empty for a while.

      2. I wasn’t on TPN, but I did lose about 25 pounds in the hospital when I had UC and went into surgery underweight. My appetite went up and down after surgery and there were some times during the first month that I barely felt like eating at all. At the one month mark, I started to feel more hungry and eat more normally again. At four months, I could still only walk about 1/4 mile, but then I made vast improvement. By five months I was back to hiking 3-4 miles and snowboarding. Just be patient and listen to your body. You will get there.

      3. It takes a while to emotionally process what you have gone through. I found that it was important to have a core group of friends with whom I was comfortable talking about my ostomy with. At first I was very secretive about it and hardly talked to anyone about my UC and surgery. However, I later found that the more open I was about it, the better I felt. Also, I find talking to other people with ostomies helps me when I am feeling down. Is there a support group in your area? Joining online support groups is helpful too. Also, as soon as you are strong enough, get out and do things with your friends and family. I went shopping and out to movies very shortly after surgery and it helped make my life feel normal again. Keeping a journal has also been helpful for me.

      Hope this helps and best wishes as you heal up.

      -Heidi

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