Coping with a Retracted Stoma: Seeking Advice and Tips

Hello everyone,

I am wondering what products are used and how others with a retracted stoma cope with their stoma, and any handy hints and tips would be helpful.

Background:

I had a gallbladder op that went awry. The surgeon perforated my bowel, didn't notice, and I left the hospital. I was in the hospital for ten days, was discharged, only to return a week later to ED with sepsis. Due to the emergency ileostomy op, they couldn't really place the ileostomy very well, and it is only 22 cm away from my stomach. Unfortunately, it is retracted and a little oval. I was in ICU, sedated/ventilated, etc., for 2 weeks, hospital a few more, and then hospital in the home. Anyway, I am now left with what seems to be a permanent ileostomy. I have had my ileostomy for 6 months.

Products:

I am using a two-piece SenSura® Mio Convex Deep click barrier and the thicker Eakin seal. This has been working well, and I have not had many leaks at all in the last few months, although, when I change my bag in the morning (every day), I can see the silent leaking.

The problem:

Suddenly, the last six to eight weeks, I have started to experience leaking. It is not the usual burning, itching kind of leaking that I became used to with other barriers and products when trialing products, but it was more like an explosion of sorts and very messy. This seems to happen at the same time in the evening, around 6:30/7:30. I have been on loperamide to help slow down digestion as my output is often quite liquid. However, at dinner time, the output seems thicker. (I am trying to get some veggies in).

Solution:

I have seen the stoma nurse, and she has suggested thinner seals. I have tried a few of them, but the burning and itching started almost immediately and have leaked before the end of the day. She also suggested I use part of a seal on the thin seal to build up a small dip - all this did was send the leak in another direction. My skin is suffering. We have also reduced the loperamide. Still not quite right.

Questions:

I would like to know how everyone else who has a retracted stoma goes about their day, when they change, and what products they use?

Also, has anyone else experienced this after having their ileostomy for a few months, and what has worked for them?

For those who use loperamide or used to, does dissolving the capsules in water work better than swallowing the capsules, or would you recommend something else?

I realize I have probably written a book but hope the extra information helps to help me🙏🙂 Hopefully, you didn't give up reading before we got to the questions lol

Hi there,

I am really sorry you are having to go through this. It is very hard and frustrating and doesn't feel good on your skin. I have had quite a few ileos that retracted. It sounds like you are doing what should be done with a retracted stoma. The convex and the barrier rings are not much else that can really be done. You can try Marathon or 3M Advanced Skin Protectant to see if that helps protect the skin. I will say you will want to use a thinner ring versus a thicker one; the thicker ring is taking away any length you have of your stoma, and it will be harder to get into the bag, and then you have to deal with the pooling, which will cause leaking as well. If you're still having leaking and the convex and rings aren't helping, I hate to say you will need a revision (where the doctor pulls out more length).

Thanks for the reply. I was also considering the thinner rings, but this last week when trying them (I tried different brands), they leaked and really did a number on my skin. I hear what you are saying about the pooling - when my output gets thicker at night, I do seem to have a pooling effect going on. I know a revision might help, but I am really not in a good place to have another "routine" surgery if you know what I mean 🙂😱

Oh I also wanted to ask, have you had revisions of your stomas?

A retracted stoma will constantly cause problems. A convex wafer will help. But like Beth22 mentioned, revision surgery would be a better long-term solution.

Your story is a tough one to read. Botched surgery. And now you have an ileostomy, which somehow is too low to skin level and not sited properly. Trying different rings and wafers might help in the short term. But revision would be the best long-term fix. It's better for a stoma to stick out too much than too little. Good luck.

Words of Encouragement from Ostomy Advocates I Hollister

Yes I have had 2 revisions and 4 relocations (it's been moved to a different spot 4 times) 

My only suggestion is to ditch the Eakin barrier ring. For it is written, confirmed...here...they are toxic to the skin for most of us.

You need to ease up on your reviews of products. Just because it doesn’t work for you doesn’t mean it won’t be the key to someone else’s success at keeping things from leaking.  Don’t scare people off of trying something for themselves, it may be just what they need. 

This isn't about leaking, my friend. I liked the Eakin seal. It held up.

The thing is, it irritated my skin so badly that the appliance could no longer adhere to the skin last week. There was weeping blood. I kinda freaked out starting a thread about it.

And if you have been reading some of the replies in my other thread... nearly everyone complained and agreed the Eakin seal irritated their skin too.

I count about 5 agreeing with me and one not... not sure... from my thread.

If there is that much irritated skin and weak adherence... of course, it's gonna leak.

That was not my complaint though... adhesion... lack of it... was and toxicity.

And I did mention for some people it works... for others not... in my other thread. In this thread, I said "most". Fact not fiction, bro.

This woman posting the thread hasn't indicated any redness. So she's doing well with it, I guess... but initially, I didn't think 6 months ago it was an issue then... blaming biologicals' side effect.

It's important people should know some products are toxic. What to look for... and how to fix it.

My thread addressed all that.

So I do wonder if this woman posting has any issues with skin around the stoma.

Hey Sis, I have an 'innie' as well & after 5 years I still have an abundance of leaks. I use coloplast brava products & have discovered brava skin barrier sheets that so far is  working wonders on my leaks. I get the ones that are 6×6 & cut a hole in the center, large enough to surround my stoma then apply it to my skin, then the pouching system goes directly on top of the sheet. It seems contrary but it's been working for me for almost 2 weeks now without using any seal. Just the brava skin barrier sheet and the 2 piece brava pouching system. Hope this is helpful for you.

I am sorry you are having all these problems. I have had massive problems with my colostomy so I know what it's like. 

My urostomy is recessed. I use the coloplast convex mio system. I also use a barrier ring and the strips you put on the edge of the flange to help extend the seal. (Sorry I'm still new to my ostomies and I don't know all the terminology). So far, I've had no problems with leaking from my urostomy. The barrier ring actually seems to be the most critical to my success since it provides additional convexity and my stoma is significantly recessed. (I will need revision surgery but it cannot be considered until I resolve a number of other problems). 

Also, should have said this first... my WOCN has suggested I wear a support belt to help hold the seal. This would be easy for you to try. My situation is a bit more complicated so I haven't tried it yet (actively seeking an appropriate belt). 

Warrior, they were horrible for me too. No problems in you sharing your experience; that's what we are here for. At the end of the day, we all choose what to try and not to try. If no one has that common sense and knows that everybody's body is different, then well, there aren't any words. All our bodies are different, from what we eat to what we put on our skin, to what works for one might not work for another. We all have to find our groove and what works; we offer advice based on what we have experienced. You didn't do anything wrong, no worries.

Yes, I remember what you had said about Eakin seals in my thread last week. You were one of the 5 people saying Eakin was known for irritated skin. This is factual information people should know about.

This thread doesn't concern Eakin seals. Sorry, readers.

I was called out simply by suggesting the poster toss Eakin out. In hindsight, I should have asked her directly, "How's Eakin treating you?" and then replied. My bad. She did mention using other types of seals which caused problems. So she experimented.

We all do that. I went from Brava to Eakin seals. That experiment gone bad.

Yes, this forum is like a Consumer Reports magazine.

And we all should know what works for one person may not work for another. That's a given. Actually, it's our mantra. Among several other mantras.

Thanks, Beth.

Thank you, everyone, for your responses. So far, for me, the Eakin thicker seal has been kind to my skin and seems to absorb all the silent leaking well. The other thinner seals I experimented with did not seem to be able to absorb the silent leaking as well. As I said, I had no issues until recently, and then it was the type of leaks I had not experienced before—a blowout, like an explosion, and sometimes I could feel it go "poof." Weird. I do wear an ostomy belt to help. Hence, I am wondering if my body is adapting and I am using too much loperamide. Seeing a stoma nurse tomorrow again. Onwards and upwards, as they say. I appreciate everyone's replies. Thank you.

☺️ I only speak the truth.

Hmmm...thanks for the tip...maybe I will experiment with this

Goodness, that sounds hectic! I cannot imagine having another surgery. I had 8 whilst in ICU to clean the sepsis out 

It was a very crazy year. Every three months, I ended up having to have surgery (all of them retracted). I had four, and then the last two were emergency surgeries. My first midline incision was an emergency; my ileum got necrotic, and I had pus coming out of the base and out of my stoma, along with an abscess under my ileum. Then, after surgery, the midline got an abscess and burst in the middle of the night; it was opened to drain. It didn't go away, then I had another abscess next to my ileum, and adhesions that led to another emergency surgery, and that midline was left open to heal. I understand not wanting to have to go through another surgery, especially when you had to go through having sepsis. Did a colon and rectal doctor do your surgery? And as far as leaking goes, I wish they had more solutions for us.

It sounds like you had a tough time for a while there. I can't imagine how that must have felt.

It wasn't easy, but I did have God with me every step of the way. He is the only way I made it through, and He gave me strength.

You have been through it too... I am glad you are here and bouncing back. In the meantime, to try and protect your skin, you can try a liquid skin protectant. There's one called Marathon and one called 3M Advanced Skin Protectant. It won't stop the leaking but will help protect the skin, depending on how much you are leaking.

I wrote an excellent post, but unfortunately, it took too long and didn't post. I tried copying it, but it was too late as the page reloaded, and going back resulted in nothing. 😢