Is It Normal for My Stoma to Keep Sinking In?

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infinitycastle52777
Aug 26, 2024 9:48 pm

My stoma keeps going further and further into my belly. Sometimes when I change my bag, I have to first try to "pop" it out. Is this something I need to contact my surgeon about, or is it just the way things go sometimes? I am able to get a bag on, but it takes some effort. My seal is still good, so I guess it might not be an emergency. It is just that I get worried. I used to shower with my bag off, but that made things worse with my stoma going flat against my belly. So I started just cleaning up at the sink and putting a bag on, then after I tried to poke him out a little. Fortunately, this hasn't thus far made him poop all over me. But I have a paper towel handy every time. Should I have to poke out my stoma? I squeeze on the skin around my stoma, and that pops him out some. Today, however, several times he went back in after I popped him out. I am afraid he is going to make it hard for me to get a bag on if he gets any more frisky and goes in any more.

 

Kas
Aug 26, 2024 10:20 pm

No, you shouldn't have a flat stoma, and you need to make an appointment to see your surgeon.  

Kim 

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Jayne
Aug 26, 2024 10:33 pm

Infinity, 

Good evening from the UK.

 

I think that I would mention your situation to my surgical team, as a flat and 'retreating' stoma becomes increasingly difficult to manage, especially if one has an ileostomy. One does benefit from the spout in order to excrete clear of the seal into the bag. My own temporary refactor after my Ties device was explanted was very flat and was impossibly difficult to manage as an ileostomist. It needed to be refactored into a workable longer-term solution in line with textbook surgery for this kind of output criteria.

 

I also believe, but others will endorse or dismiss the thought, that for a colostomy that becomes inverted, this is not a good forward journey, especially as it may be adjusted to facilitate far better long-term management. 

Others will doubtless come forward to offer suggestions.

 

I regret I do not know at what point your bowel discharges. Frustrations can run high, with much misery of management, which in my own humble experience can be far better managed with an appropriate reparative surgical intervention. Perhaps such action may be good for you too?

 

Hug,

 

BW,

 

Jayne

infinitycastle52777
Aug 26, 2024 10:43 pm
Reply to Jayne

Thanks for your reply. I have an ileostomy. It hasn't always been this way. When I first got my relocation, it wasn't an issue. I have gained some weight recently due to being on a certain medication which caused weight gain. I am afraid this may be a reason for this too. I am off that med now and am losing weight, but not fast enough, I don't think. Maybe not in the right places. I don't know where the weight is coming off from. I have a way to go to get back to my original weight. I feel like this could be my fault, even though I couldn't help being on that medication. I am now unable to get a seal, so that is why I am not sure if it is a problem or not. But I do have to work at it a little bit. Maybe if I keep taking the weight off, it will help.

 

infinitycastle52777
Aug 26, 2024 10:44 pm
Reply to Kas

It's not totally flat, but it does go like it wants to be flat. It's an ileostomy. I already had it relocated once. I don't really want another surgery if I can help it.

 

 

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Mysterious Mose
Aug 26, 2024 10:54 pm
Reply to Kas

I agree with Kim

Daniel

warrior
Aug 26, 2024 11:06 pm

Ditto on that. See the doc. 

Sasquatch
Aug 26, 2024 11:33 pm

I'm with everyone else, make that appointment, get it looked at.

AlexT
Aug 27, 2024 2:36 am
Reply to infinitycastle52777

Your stoma may not be going flat if your stomach is getting bigger from weight gain. Your stoma will fluctuate a lot throughout the day; you may want to keep track of how it is for a few days before deciding on whether it's going flat from retracting or if it's your stomach gaining ground from weight gain, making it look like it's going flat.

DavidK
Aug 27, 2024 6:53 am

If you can still get your bag and aren't experiencing any leakages, I'd leave well enough alone. But if you have continuing concerns or start experiencing real difficulties, an appointment with your surgeon would be in order.

Axl
Aug 27, 2024 10:31 am

My first stoma was virtually skin level and only just protruded sometimes and was only 25mm in diameter. I have had four, and this first one was the best one. Personally, I don't like the protruding one I have now. I used a convex appliance with a moldable seal and had no leaking or skin issues. If your stoma causes no issues, then just leave it be. Just because it is almost level with your skin, it doesn't mean anything is wrong.

Kas
Aug 27, 2024 12:08 pm
Reply to infinitycastle52777

I have a colostomy, which acts like an ileostomy due to short bowel syndrome, and about 7 months after its creation, half of it became almost an “innie” to where it was at skin level and just below, while the other half stuck out like normal. I had constant leaks, which caused skin problems. I ended up having a revision, which solved the problem. The revision was one overnight in the hospital and an additional 4 days out of work. The surgery was easy, and the only bothersome thing with recovery was the itchy sutures. I was out for the procedure, but they didn't have to cut me other than to make the hole for the stoma a little bigger—they just pulled out a little more gut.

I know you've been through a lot, and the prospect of another procedure is terrifying, but this was absolutely nothing in comparison to all of my other surgeries.

If you haven't already tried, you may want to try a convex appliance and see if that'll help.

You should at least consult with your surgeon to discuss your options. You don't want skin breakdown!

Best wishes,

Kim

Beth22
Aug 27, 2024 8:50 pm

Hey there,

If your stoma has gone retracted, then I would see the surgeon. Question: does it stay retracted, or does it come out, stay out for a while, then retract? Mine does all kinds of things it shouldn't do lol, and stuff that hasn't been heard of lol. I've had to have mine moved 4 times and 2 revisions in a year and a half. So, question: are you having leaking issues?

Marjatta
Aug 28, 2024 8:11 am

Great post and replies!

I agree with the majority that you should have it looked at by your surgeon, at least to reassure yourself that everything is normal. The surgeons are there to advise you because they did the original work and should know your body better than anyone else.

I haven't gained actual weight, but a few months after my ileostomy, I developed a slight parastomal hernia which has caused my stoma to appear a little more retracted. It still pops out and moves around in weird and wonderful ways, but for the most part, it has receded somewhat compared to what it was in the beginning. It doesn't cause me any problems with leakage, but the actual hernia does bother me a bit for aesthetic reasons (my own vanity).

Please let us know how you fare with this!

M

xo

 

 

 

Hisbiscus
Aug 29, 2024 2:13 pm

I would go see the surgeon about it. In the meantime, Convatec makes a pouch that is hard convex. It's the ActiveLife convex pouch. It's the only one that will keep my flat stoma sticking out in the bag.