Stoma Retraction - Seeking Advice

That is exactly like mine and I've had this over 10 years. I finally might be getting it refashioned. I get really bad pains as I can feel it pulling back in when there's any movement and bleeds quite a lot.

Victorialouise,

I can feel mine doing the same, after my first revision and when the location moved I felt it start tugging after 5-6 weeks after surgery then after that.. Good to know I am not the only one who feels it tugging. Will this be your first revision or have you had ones already?

I've had mine since I was born. They messed my mum about a whole lot, saying things were in her head and there was nothing wrong. So I ended up having to have a colostomy back 22 years ago, but it wasn't successful, so I had to have it placed higher. Now for about 10 years, I've been having it slowly coming away. So if the doctors do it, it would be my first time having surgery as an adult, but my first time having it refashioned as they said they may end up having to move it if there was not enough bowel left that was healthy. I've been given many things to try and help, but they mentioned a paste that can be used to bring it back together if that was something for you to try. It just didn't for me, but I have read a story that was successful in hers healing back up. If that is any help.

Hi there,

I too had issues since birth and they just told my mom suppositories and mineral oil, as I got older it got worse and no one would believe me. It took them almost 20 years and over 12-15 doctors later.

I appreciate the suggestion.. Unfortunately, nothing works. I went through every brand, convex light and deep, every paste you can think of, string paste, barrier rings, and other stuff I came up with. I've only had my ileo for a year, got it in Jan 2022, retracted within 2-3 months, had a revision in Aug of 2022, that one retracted within 7 weeks, and I had my stoma completely moved in Nov 2022 and it is high on my stomach and this one retracted in Jan. And each day gets more and more. I leak within literally 4 min. of putting on a new appliance. I called to make an appointment. So, I've got to figure out why it retracts all the darn time.

I'm sorry to hear nothing works for me either. Surgery is the only option I think as long as there's enough bowel. You need to seriously speak to somebody soon as it sounds like a hard time you're going through.

Let me know how things go for you in the future.

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I had made my doctor's appointment over a week ago. I'm not the type to sit idle when I need to go. I saw him yesterday.

Haha, I always have my mind set as if I am invincible to my family. So when there's ever anything wrong, they shoot me down when I'm told to see somebody. And is there anything that can be done for you?

I am really sorry. Why do they shoot you down?

As for my situation, it's a head scratcher. From when it's first created, it shrinks rapidly in a short amount of time. First couple days I shrink 10mm, then another couple days 7mm, another couple days 5 and so on, then it retracts too. Lol I am the type where find the problem then you can find a solution. My doctor and I talked for over 30 min. He thoroughly looked at my stoma, for a good 5-10 mins, so he is trying to find out what the problem is so we can find a solution.

Sounds like you have a great doctor. The one I saw didn't even take my bag off and said, "See you in 6 months," but I never heard from them. I understand waiting times here in the UK to see people, but it never seemed like he cared. Sorry, I meant they always tell me I'm not invincible, as I have the mindset I'll live forever. Haha, and nothing will happen until I see a doctor, and then they tell me I'm not invincible. When I got COVID, all my family got it before me, and so I told them I'm invincible from it, but unfortunately, the test came back positive after we came home.

Oh, good. I am glad to hear it is the opposite of what I misread. Lol, none of us is invincible. He is a really good doctor. He is actually my second surgeon; the first one started out good and turned bad real quick. God led me to this doctor I have now.

But why 6 months? That's a long time, and how would he know what's going on if he doesn't look? I would try and either remake an appointment and tell him it needs to be looked at, or I would switch and find a different doctor. I have learned through many, many different doctors and specialists: if they aren't willing to listen, pay attention, and take their time with you and do what you know they should be doing, then it's time to move on to the next one until you find someone that will listen and will help you. No one deserves less.

I'd come back from the dead and say I'm invincible haha.

Well, I'm being referred again by the GP to see a second doctor, so hopefully it's not the same doctor as last time. But even the stoma nurses said he does this to the patients, and they had it before where they had to come with them because he speaks to people like crap. He didn't even seem like he understood anything we told him. Previous breast doctors had picked up on my weight being a stone more than I was when I first went to see about a reduction, and then when we saw him, he was focused on my weight and said give me 6 months to lose a stone and then to see about what to do. But let's just say I don't think he ever had the intentions of seeing us again, as it's been well over a few years now. But because of the issues with the NHS wait times, I didn't feel like ringing, but I've had other tests for other things since, so there can't be this long of a wait.

I have the opposite problem, lifting heavy weight has made mine prolapse. :)

I'm sorry to hear that. Is there anything that can be done? I saw on a TV series here in the UK of a man who had his prolapse, and it looked awful for him, but it was sorted and it was a happy ending, not to scare you.

I hope it hasn't prolapsed too far out ...

I know this might not apply to your exact problem but the food I eat definitely decides whether my stoma will retract. I've noticed tomatoes in particular (I ate chopped canned tomatoes) made my stoma retract and go flush with my skin several hours after eating them so I've been avoiding them and my stoma hasn't retracted.

Hello

I just read some of your posts. I don't have any sage advice but I do have a suggestion. There is another ostomy site called Inspire. One of the members has had difficulties similar to yours. Also, she posted a pic and her retracted stoma looked like yours. Her username is Too Much Too Soon. If you log into Inspire, you might be able to read her posts and possibly private message her.

Also, have you tried the ring from Perfect Choice? Several people with retracted stomas claim they work better than any other ring, including Eakin.

Hang in there ......