Stoma Retraction - Seeking Advice

Hi guys,

So, bit of a head scratcher, but I am on my 3rd stoma and they all have retracted. Anyone else have had this issue? And if so, what caused it?

My husband's ileostomy always seemed to retract when there was some pancaking at the top. The group suggested a convex flange. That's what we use now when this occurs and it seems to work for us.

What do you mean retracting?

Just how far is it retracting? Is it affecting your wear time?

AlexT,

Well, the first two pulled back flush with the skin and this last one pulled back as well but healed to the left with the hole opening on the bottom and laying up against my skin and every day pulls in more to where part of the hole isn't all the way out, just looks like a slot. I am trying to find out why I keep getting retractions...

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

Hey delgirl,

This last surgery was the third surgery for retractions and the location got moved.

I don't even get 5 minutes of wear time, the way it sits to the left and then the retracted nothing sits underneath it's just a hole straight to my skin.

I didn't know if anyone has had so many retractions and if they ever figured out why.

Ok, I know some think that their stoma moving in and out throughout the day is retracting when it's just normal movement.

Oh no, I am fully aware of that movement.. Lol. Remember, I am the one that finds it fascinating to see what it does. Unfortunately, it's not just movement.

So my stoma is flush if not convexed? In a bit. Always been like that. I use a super soft, flexible pouch...made by Hollister 88725-soft flex, 1 piece drainable, lock n roll, beige, with filter. You get 20 in a box. So they are recommended for day and a half wear. They are also a bit smaller..called mini. It's about 7 inches as compared to the standard 11-12 inch size pouch (I'm 5'5", 120 lbs). I also wanted another surgery to correct my flush stoma but Dr. in Boston said I should seriously think about that as another surgery had no guarantee it wouldn't happen again. She said best to try and find products that worked for me. So I did that, and got sample after sample after sample. Finally found 88725! Best wishes

Unfortunately, I am allergic to every brand but one, and I have already tried literally everything you can think of and then some stuff no one would think of... After 3 stomas retracting and a year later, all I have done is leak... And what's funny is you know you're well experienced when a stoma nurse takes notes on tricks you have tried and says they haven't ever heard of that...

I appreciate the reply, but I am looking to see if anyone has had multiple stoma retractions and what their cause was. Being on my 3rd and everyone retracts, it's quite odd... I have a couple of reasons in mind, but I am always in the category of the most odd off-the-wall reasons along with allergies. I was hoping I might have found another 1 person.

Interesting. I would think most of the sticky stuff is made of the same stuff, no matter the brand. Then, they all add their own little ingredients to make it special.

Alex, I had thought the same but apparently not. I can only use Coloplast; the rest of them I am highly allergic to. And forget convex, it doesn't work for me at all. Stoma slips right underneath, doesn't make my stoma protrude at all whatsoever, and on top of both of those, it leaves me bruised. My stomach is left black and purple.

So sorry you are going through all of that, Beth.

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Hi Beth. If this is your third, what has your surgeon said/suggested? You might want to first write and then video chat with other surgeons. I'm sure a lot of ostomates in various regions would give you recommendations. My surgeries were performed at Mount Sinai Hospital on the Upper East Side in New York City: the initial one in November of 2016 and the permanent one in November 2017. Excellent surgeon. If you are interested and wish to go in this direction, I can provide you a name and contact number. All the best - Silveradokid.

Hi Beth, the only clue I have toward "why retractions happen" is what my surgeon said — that there is always some scarring, which pulls on the tissue, and he can't control where the scarring happens nor what direction it will tighten.

I use a soft moldable slightly convex flange which, over time, has encouraged my stomach to stand up better. Nonetheless, I think that consulting with other surgeons is probably your best bet. Even if there's no guarantee of a better result, you have to wonder how much worse it could be.
Good luck.

Hi there,

I appreciate you reaching out and offering advice. I am not there yet in switching surgeons. I will find out after my appointment.

Oh, I am very much the type to find a different doctor when it is warranted. If they don't listen or try to figure out what's wrong, etc. I went to over 15 doctors and it took almost 20 years just to have found out what was wrong with me. My first surgery was actually done by a different doctor in a different state. When the first one retracted, he literally would not touch it. I had moved a couple of months after. The surgeon I have now is actually a great doctor. When I first saw him, he was telling me stuff my first doctor didn't. He did a revision, and when the revision retracted, he set out to find a whole new solution. Both of us agreed the site needed to be moved. It was a horrible site the first doctor placed it in, along with other issues I had with my rectum that the other doctor didn't figure out. I had the relocation surgery in Nov. And it was actually going great, didn't retract until about 2-3 weeks ago, and it retracts quickly. Within a day, it will be a huge change. I have an appointment with him, and if he can't figure out why my body keeps doing it, then I will find a different surgeon. It is very odd why it keeps happening, the same way as when after it is first done, I shrink rapidly and not slowly the way a stoma is supposed to. I am not the easiest patient to find out what's going on. I am always the rare case where you have to dig deep and think so far out of the box. Lol

Beth - I have had several revisions mostly for the same reason. No one can tell me why. Maybe the constant pull of the bowel? Normal peristalsis? Higher peristalsis from ongoing bowel disease? Not enough bowel freed up to begin with? Hernia at the stoma? For a long time, it was surgery every 3 - 5 years. This last one has lasted for quite a while, but had a scare with an obstruction and had to fight to avoid more surgery. My surgeon said I was like cement in there and he never wanted to operate on me again! Loads of scar tissue, failed J-pouch, dead section of bowel cost me more, so now it is a rather high ileo with bag emptying time about every two hours. I have problems with fluids if I get too watery and need IV intake. The doc put me on oxi for a while to slow my gut down. It worked but then he refused to give me any more. I only took one of a night but there are so many regulations about it that those of us that need it and do not abuse it have to suffer.

My rant for the year!

If this is the 3rd time and the same surgeon, I'm going to honestly say this is because he/she isn't doing their job properly to attach stoma correctly and high enough so that it doesn't fall back underneath your skin. Again, since this is the 3rd time, it is what he/she is not doing that is causing this issue, and in your case, he/she needs to rectify it and pay for it as it's because of them that it keeps happening.

All due respect, but I can say this honestly because my surgeon had to fix mine, because the first time it retracted and the skin started growing over the hole. I told him that he needed to fix it because that's not how it should be. He ended up pulling my stoma out about a 1/2 inch higher and attached it better so now even though it's out more, it stays even with all the movement.

Hi. Sorry about that happening. Almost 50 years ago, my surgeon did something to pull the stoma out more. It still retracts sometimes that it frightens me that it's going to go inside. One ostomy nurse suggested to drink more water and keep hydrated. Another thing is to cough and it will come out more. I usually wear a very tight belt to hold it out. Hope that helps.

With all due respect, I know for a guaranteed fact it is not the surgeon. I have had two different surgeons. The first did not do it right, so my second surgeon had to fix his mistakes and the site was horrible, so it needs to be moved the third time. It is my body and there's something going on inside that needs to be figured out in order for it to be fixed, or it could be the abdominal wall not strong enough, etc.

Judi Prescott,

Finally, someone that has had the same issues. The whole reason why I wrote the post was to find another going through the same weird, odd, off-the-wall situation. It gets pulled out a really good amount, maybe my doc needs to pull 3x as much out... along with other ideas of things it could be. Looks like we are the odd ducks they have yet to figure out.

Redondo,

Thank you for reaching out and trying. I have tried those things. I don't know if you saw the pic above, there's no helping that bad boy. Lol. I have to say this retraction has been the worst one.

I've had a similar experience since getting a permanent ileostomy 15 years ago. I've had multiple stoma revisions because of retracted stoma, possibly also related to a profusion of adhesions. I have a super active stoma, which my surgeon has called "hyperkinetic" or something similar. It basically rarely stops moving, which makes ostomy changes challenging. I think my experience is pretty unusual, too.

Have you ruled out a hernia? I think that's a pretty common cause of retraction - can't imagine it hasn't been considered, but thought I'd throw it out there. Good luck, I hope you find something that works!

Yes, I haven't had a hernia either of the three times after surgery, but thank you.

You're too. Mine's like that. It is hard to get a quiet time to change, and even when I think she is quiet and she acts quiet, as soon as I take it off, she likes air and starts moving. It is super frustrating. And the adhesions, something I will definitely bring up to him and ask. May I ask how your stoma is now? If it still retracts? Sounds like you're pretty unique too.

Retracting can happen over the years. Especially if you gain weight, which happened to me as I got older. It shouldn't be a big problem unless you have diminished output. Like others have said, convex wafers usually solve the problem. You might talk to an ostomy nurse who can help you find the right appliance fit. Good luck!

Hi Tom,

I appreciate you reaching out. Unfortunately, convex wafers nor anything else under the sun solves my problem. As I have posted this above, I am not looking for tips as I've tried everything under the sun and then some. I was looking to see if others had the same issue with their stoma retracted multiple times after multiple surgeries. And ostomy nurses are no help at all. I have been to a couple... lol, you know when you're in with an ostomy nurse and they are literally taking notes on tricks I have tried and asking me questions as if they are the patient.