Stoma Shrinking Issue - Barrier Sticking Problem?

It seems like my stoma gets smaller after I change it. When I do a change everything fits properly, but then it seems to shrink down under the barrier. I don't want to have to change it every day. Anyone hear of something like this before? It just started acting like this the past week, I've had it since January.

Thanks for any advice.

Edit: I think it's the barrier not sticking properly and rising up above my stoma, giving the appearance that the stoma is shrinking when it is not. Is this something that happens?

What type of stoma do you have?

Your stoma is alive. No really, it'll go in/out whenever it wants, mine usually goes flat when I change my bag and then it's sticking out and bigger pretty much any other time.

Under the barrier? Like below skin level? I have not, but I think I have seen a few posts on here where people have said theirs have. Mine will sway side to side and up and down, and grow in width and look like a pissed off slug but fortunately not go back in. Hopefully, someone with experience of that will see your post and respond.

A loop ileostomy. Not that I really know what that means. Maybe I should be doing some googling lol

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Mine just seems so small as opposed to the last time I had one. The barrier more so seems to come up around it....hard to explain.

It doesn't go inside, just seems like the barrier is bigger, or my stoma seems smaller and the fit feels off. Hope this makes sense. Not sure if I'm doing something wrong or what. Hopefully, someone will know what I mean.

Loop ileostomy is when you have your intestine split and one part is your stoma that outputs into your bag and the other part of the intestines is still connected to whatever you have left of your intestines. End is when your stoma comes out but nothing else is going back inside you. Loops are always done when there's a chance of reconnection. It looks like you had a jpouch like I used to have; those are always loops between the surgeries. I have an end ileostomy now and have found it a little easier to deal with, but also no chance of reconnection.

I had a loop which I was told is harder to manage than an end ileostomy and mine was oval so that added its own challenges.

Do you push your abdominal muscles out to make yourself look really bloated when doing a change? And then push down against it when you are getting it to adhere to the skin around it? Are you putting the barrier around the stoma or are you attaching it to the wafer?

I am not pushing my abdomen out, no, but I do push it in to adhere it. I have tried both ways of attaching it. So stressful for me because I'm scared of leakage.

Thanks for explaining this so well for me. I knew it had something to do with the reconnection. When I was younger, my stoma seemed so much better. This stoma almost seems flopped over or like it hangs down a little bit. Maybe this is a reason as well?

Do you have access to an ostomy nurse to have a look at it? I literally saw an ostomy nurse weekly for 7 weeks because my stoma (loop ileostomy) was such a pain in the beginning. I named it Marilyn Monroe because she was a diva.

That's what I had

Yeah, the further away from your skin the ostomy is, the better I think. My loop ileostomy was definitely harder for me to manage because of skin issues and fear of leaks, but I got better at it right before my reconnection. An end ileostomy is better if you never get reconnection, in my opinion, but was hard to accept at first for me, knowing it was permanent then.

Hi Daisy, it is natural for your stoma to change size. Mine is constantly changing throughout the day. Sometimes it looks really tiny, like just before it's going to start working, or when it's working. Other times it gets quite big. I also have a loop ileostomy, although it's permanent. When I got the ileostomy, they made it a loop in case it didn't work for me and they could reverse it. When it worked out well for me, the surgeon went in and removed my large bowel, but just left the stoma as it was instead of creating a new 'end' one, so it's an oval shape, which is normal for ileos.

Terry

Is your stoma shrinking in diameter? Or is your stoma retracting? (Pulling back in toward your abdomen)

I think you are right and it is normal... I must be doing something wrong. So discouraging to me. Mine is so tiny!

So they were not able to reverse it in your case?

Seems like it shrinks in diameter because when it seems like a perfect fit, overnight it seems as if it is on the verge of leaking. I'm not sure what I'm doing wrong when I change it.

Your post said it seems like it's going under the wafer, your output or your stoma is? And how are you cutting the wafer?

The diameter isn't changing, it just goes from almost 'bulbous' to very small and shrunken looking.

We were hoping it would not need reversing, that would have been the worst case scenario, because my colostomy did not work well for me at all. I had colonic inertia, which means the muscles in the colon do not work properly. The ileostomy functions well, so my large bowel was removed. The only reason the surgeon did not give me a new stoma was because the one I had worked great, and I asked him if it was necessary to create a new one, more complex surgery, no guarantee that the new one would be great. He agreed that it was fine to leave my loop ileo stoma intact. So, I technically don't have a loop ileostomy because my colon is gone, but I still have the same stoma. A little complicated!

Terry

Try a convex barrier for a while. I had the same problem, and the convex barrier took care of it. There are times I can go back to a flat, but lately it keeps doing its thing as it wants, and I ended up with both convex and flat barriers in my stash of supplies which I use as needed by my (never quite stationary) stoma.

I was almost thinking that the other day when I was on one of the supply sites (Hollister I think) that I might need that. I should get a sample maybe? I asked the pharmacist about different types and they said I have to go with the one I was fitted for in the hospital. I guess I would need to see an ostomy nurse maybe? It's frustrating.

Casey 2023, no, you don't need to have an ostomy nurse to approve any bag system you want to try, or any brand name you want to try, or any ostomy paste, rings, powder, wipes, adhesive removers. You can try whatever you like whenever you like. All you do is call the company and ask for a sample, and you can call and try whatever product and product company you like.

Both

Sunshine, yours is retracting?

Good to know. So it doesn't even need to be approved by a nurse at all? My pharmacist was misleading, but I'm not sure she knows much about ostomy products.

Sounds complicated, yes, a little bit, but I think we all are. LOL. What did you mean about not reversing?

This sounds weird, that a pharmacist would even say that. It makes me wonder if this pharmacist is originally from the U.K., because my understanding is that you do need approval from a doctor or ostomy nurse to use different ostomy products. Maybe he/she isn't familiar yet with how things work here. In Canada, you absolutely don't need that! Just contact the company and ask for any samples you want to try out. Try lots of different styles and brands until you find exactly what works best for you.

Terry