Need help with ileostomy - major leaking and skin issues

Hi Sandi, if you want to get away from taking meds to thicken your stool, try applesauce or peanut butter on crackers. I've had an ileo for 25 years and those work for me. Also, on days I change my system, I eat a few marshmallows to slow and thicken my stool. Good luck, Ron in Mich.

I have had an ostomy since 1992. I recently have had trouble with my flange leaking!
There is a product called Aquacel AG by Convatec. It has silver in it to promote healing!
It looks like felt, just cut off a piece and lay it over the infected area. Then put your flange on!
Never use alcohol on your skin, it will make it more irritated. Water is okay for it, but air would be better! I found after all these years without problems until I started going into menopause! Any thoughts?

Hi all,

I had a painful white "blister" which turned out to be an ulcer on the skin under my ostomy for years. I just dealt with it....never having used an ostomy nurse. One day, that spot started spraying blood all over my friend's white bathroom (I was changing). Rushed to the hospital (2x) and after seeing a surgeon, found out about Pyoderma Gangrenosum....which is essentially UC on the skin. Every time I have a lesion that won't heal, it turns into a "hole in my belly". I had three months of one under the wafer, and it was a mess. But I used a very potent salve (Protopic) and then sealed it with waterproof tape over it, and then put on the wafer. It took months, but it healed. Very few people (and doctors) seem to know or recognize it. My gastro dr didn't, nor did the dermatologist, or the first surgeon I went to. It's only after the emergency room visit to NY University/Weil Medical Center Hospital was the condition diagnosed. Google P.G and read up so you can recognize it... Plug in the word ostomy pictures because it sometimes only shows pictures on the skin not related to near a stoma site. Good luck to all.

Oh, my God, that sounds horrible. Awful. You suffered with that for years? You poor thing. Wow. What a horrible ordeal. How awful that the dreadful disease could attack your skin.. and in such a strategic location.

I almost feel "lucky" that I only have cancer, and not IBD. Well... had, cancer, I should say. They tell me they "got it all" and the margins were clean... so may I never have it again. I guess that's the point of the six months of chemo they have me on, now.
It was anal cancer.

So you were married many years while you had the ostomy? That's great. Sorry about the divorce, but it sounds like you're over it.

I had blocked my ex, to whom I was married, also for 25 years, on a certain social networking site. A week or two ago, I decided to unblock him. But then I saw him post something funny on my daughter's "wall" today. I so much wanted to post a funny reply, but I thought he might suddenly think I don't hate him anymore, if he saw that. I don't hate him, actually, but I never want to have another conversation with him. Yes, he's funny and can be charming... but he can also be that vicious guy...

So I blocked him again. Now I won't see his posts and he won't see mine. That feels so much better. Better than a bandaid over a bleeding ulcer. It's like... having no ulcer. Sorry for borrowing your suffering for my divorce metaphor.. I certainly hope you had beaten that condition for good, and never have to experience it again.

I use Eakin seals which protect the skin and keep liquid in. Good luck!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Sorry you have been having so many problems with leaks and sore skin, etc. I have only had my stoma for a few months and initially went through a period of leaks and extremely sore skin as you described, especially when output was very liquidy. I couldn't get the bags to stick properly and for long enough because the skin had small open sores.

The first thing I tried to combat this was to dab a thin layer of calamine lotion all over the sore area (don't worry about it getting on the stoma itself). I used a handheld fan to get it dry. This helped in two ways, by drying the skin to get a better stick and to soothe and help heal the skin.

I still had problems though when really liquidy and was given Convatec convex bags and had to use stomapaste to "fill the gaps" where my stomach has a crease. Although the paste helped do that, it stung quite a bit when going on the sore skin and was also very difficult to remove if the bag needed changing too soon and it hadn't set properly, making my skin even more sore.

Instead of the paste, I now use an Adapt ring under the seal to fill the gap and make the area for the seal flat. I cut the ring in half and stretch it to fit around the whole bottom half of the stoma (where I used the paste). This has made a massive impact, and I have been leak-free since. It helps with the sore skin as I stretch it to totally cover and protect it and doesn't sting like the paste. It also comes off easily (I use adhesive removal spray) and painlessly unlike the paste, which sometimes had to scrape off, taking skin with it. Since using that, my skin has healed up. When I first used the ring (or half the ring to be precise), I still used a very thin layer of calamine but don't need to now, just use Cavillon barrier spray as it dries really quickly.

I also find it much easier to apply the ring rather than paste if my stoma is active when I change the bag, which it often is as I can put the stretched ring and bag on much quicker than doing the paste.

Sorry for the reply being so lengthy, but I hope this helps you and maybe others looking for an alternative to stingy paste. Maybe you can get them to send you some sample rings to try.

You can buy capsules that thicken the bowel movement. This helps with the leaks a bit. I too had a bad time with leaks. I got on here and contacted all the companies I knew of. They were great to send samples and advice. You just have to keep at it until you find one that suits you.