Desperate for Help - Workouts, Diarrhea, and Leaking with Ileostomy

Hello,

I'm very new on here. I am hoping someone can help me. I'm feeling rather desperate.

I have a permanent ileostomy. I had the surgery in 2018. This was due to a 7-year battle with ulcerative colitis.

Anyway, I started working out (aerobic exercise) twice a day for 45 minutes. This has started giving me diarrhea, which leads me to dehydration. It also leads to leaking. I've been having to change my pouch every day to every 2 days, and all around my stoma, it's bleeding. My skin is sore. However, I really don't want to stop working out. I really want to get back to being toned, strong, and healthy.

My doctor, whom I haven't met yet (just talked on the phone due to Covid), had one suggestion only, and that was to put 2 tbsp of oat bran in a probiotic yogurt for breakfast.

The only way I can stop or slow things down is to take a minimum of 4-8 Imodium a day. That gets costly as well as changing pouches this often as well.

Has anyone else run into this problem? If so, what did you do to stop it...any help would be so appreciated. Thanks so much.

Hi Kela,

Boy, you have been through a lot! Sounds like you've had a lot of frustration to deal with. I don't have the same issues you are describing, but someone else on this site will respond with their experiences, I'm sure. In the meantime, have a look at the collections in the upper right corner of this page. Both Ostomy Tips and Premium Content may give you some ideas while you're waiting. Hope things get resolved soon.

Laurie

Hey Kela and welcome,

This is a supportive site. I'm sure you'll get plenty of help.

When cutting out your hole diameter, I myself recommend leaving it just slightly larger so when you are bending, twisting, or making any movement, it will not make contact with your stoma. That may help with bleeding.

When you change the adhesive part of the bag, whatever you use to wipe it all clean, lastly use a paper towel damp with water so there is no other chemical residue on your skin. Prep can make a difference.

Hopefully, someone else will provide the cure.

...mtnman.

Hi Kela, I see you are from Lake Cowichan. Where is your doctor? I would ask your doctor to hook you up with an ostomy nurse. It might be that the nearest hospital with a dedicated ostomy nurse is Victoria, but maybe Nanaimo? Alternatively, where do you buy your ostomy supplies? Major suppliers have ostomy nurses on staff who are there to help with just the kind of problems you are having. It might not be practical for you to meet in person due to your location or due to Covid (although my ostomy nurse is doing in-person appointments now), but an over-the-phone appointment should be doable. The only other thing I can suggest is that when you are changing your pouch, take a shower and be really particular about soaping up and cleaning the area around your stoma, then rinse really well, then make sure the skin is absolutely bone dry, dry, dry. Good luck and please let us know how things go.

Terry

Hi Kela - I've had my permanent ileostomy for over 20 years. You have my respect for working hard to be healthy, but my advice is to find harmony with your stoma. I suggest that you try to avoid jumping or extreme twisting - aerobic activity that will stress your ileostomy and can impact the seal on the wafer. Maybe do less strenuous activities but for longer or more reps to compensate (?). Depending on your diet and the time of day you work out, avoid caffeine, which can make your output watery. Try eating some oatmeal, banana, or peanut butter (within reason) to slow down your gut and give you some time without your pouch filling up. Congratulations on your healthy life focus.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thanks Terry. I did text my ostomy nurse I had when I lived in White Rock. She is amazing. She has not heard of my problem. She suggested a prescription to get from my doctor. I have not had a leak in a year and a half...it's only been since I've been working out. I thought due to sweatiness and positioning. However, I think it's more so due to diarrhea that I can't get under control.

Thank you for your advice. I have been eating bananas, some rice, peanut butter, oatmeal and now the doctor suggested adding oat bran into my probiotic yogurt which I've started too. That sucks if I can't do the aerobic exercise as it's easy to do at home. I have to figure something out though. I really appreciate your thoughts though and will look for other forms of exercise.

Hey Mtnman, thank you. My pouches are precut. I really haven't had any leaking issues for 1.5 years. Possibly, it is the type of exercise and the sweatiness... more than anything, I think diarrhea is a big factor and that needs to get under control. Thank you for your thoughts though, I really appreciate any help I can get.

Kela... I too have an ileostomy. If I do any types of aerobics, I wear a hernia belt. I had to be fitted for one by my Ostomy nurse... then they ordered it and it was approved by insurance. Are you wearing a pouch with a belt attached? I never do anything without it. Your shaking and shifting too much and it's releasing your pouch too much. I too have extremely high output. I change my pouch faithfully every 3 days... no matter what. My ileostomy was due to 19 years of a rare case of microscopic collagenous colitis. Try that... I find it's very helpful for running.

Hi again Kela, we might even have the same stoma nurse. Were you attached to Nightingales Medical Supplies in White Rock or Peace Arch Hospital? I've seen a few of the nurses at Nightingales but my favourite is Heidi. I've been giving your predicament some more thought and I think Letsgogolfing gives good advice. Your 45-minute workouts twice a day might just be too much to expect your ostomy to handle. I also admire you for wanting to keep fit and I totally relate. Before my ostomy, I was a gym rat and I think honestly in retrospect I was probably addicted to exercise. My gym exercises were 2 plus hours 3 to 4 times a week, but I alternated aerobics with strength training and I seldom worked out two days in a row. You need to give your body a break. On my non-workout days, I would always still get out for fast walks. After surgery, I had hoped to get back to the gym and then COVID hit. I am not happy with my fitness level right now but I'm doing the best that I can. I do work out at home and walk lots but I know I'm not anywhere near the level I was at, so I totally get where you are coming from. You just need to find a balance you can be satisfied with between fitness and a happy ostomy. I think it's called compromise! Hang in there!

Terry

This might be a little long but hopefully it will help. Let me see if I can give you two directions to help you out. I remember to get ahead of hydrating the body, you need to drink fluids before your workout and allow yourself to hydrate your body when it is not under stress from exercise. There are some drink additives that you can take that allow you to absorb more fluid through your small intestine than just water alone (Liquid IV, Power Pak, and Trioral). This puts more things in the water to allow your gut to absorb it better, but follow instructions. Some are once a day or as needed. When you are working hard, a lot of times the idea is to drink fluids only then, to catch up when you're feeling thirsty. With an ileostomy, you need to plan ahead or your body will fall behind. Food tricks will help also to slow the flow of how fast things move through you, and the list an ostomy nurse can advise is always helpful. A lot of information on this site has a list of food that can help. Always be aware of food allergies. I developed a lot when I started having problems and was diagnosed with UC.

The second direction is your ostomy supplies. Try out different brands; they are not always the same. Companies want a customer for life, so they love to provide samples. Take advantage of this. They make many products to help with the seal around your stoma. Some react to the fluid and fill in areas that try to leak. Also, the seal comes in different styles. Some are flat, some are convex that push more on the area around your stoma. There is also paste and seal rings. Here is what I do. I will clean the skin with adhesive remover and then a wet paper towel to remove adhesive remover residue to ensure it is clean before using skin prep that makes the area sticky. Then put the molded ring around the stoma and get it up against the stoma with no gaps. Then I will put the paste on the seal on the edge of the hole that I custom cut to fit. When ready, I will push the seal on and press to get a clean seal on the adhesive. Then I have a PVC pipe fitting that is clean that fits over the stoma but inside the flange of the seal and gently press it down so the paste and molded ring have pressure to adhere together and to my skin. Then I will put the bag on and lock it down. I use a two-piece system, so that is how it is possible. I have not had any leaks, and I work outside all day in all weather in Texas.

Hope this helps.

I weightlift at home. I had a really hard time at all levels in the beginning. There is a pouch that Hollister makes, it is a high-volume pouch. You can use a ring with this pouch, what it will do, for now, it will stop the leaks. With the ring and this system, you will not leak, impossible, it fits perfectly. It will allow you to stop the leaks, and it will also allow you to change the bag less often for now. It helped me at one point to figure out my diet. I have a very healthy diet now, fruits, vegetables, and lean meat in small amounts, and has increased my energy levels tenfold. Watch what foods you eat before working out. I do not eat past two pm, and many days one pm. I have a great system that allows me to have a full life, including intimacy. It took a long time and I built it from reading for hours to no end this site, and the ostomy nurse, not all are good, one I met is amazing and see her once a year. It is counterintuitive, but this bag is actually super easy to hide and use during intimacy. She recommended this pouch and solved the issues during that time until I found a new way. I wish you the best and there is an answer to your issues, it is a matter of persistence and endurance, hang in there, wish you all the luck.