Stoma retractions

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 colotomy back 22 years ago but it wasn't successful so I had to have it placed higher and 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 noone would believe me took them almost 20 years and a 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 withing 2-3 months had a revision in Aug of 2022, that one retracted with 7 weeks, and I had my stoma completely  moved  Nov 2022 and is high on 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 appt. So 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 your going through. 

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

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

Haha I always have my mind set as 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 shrink 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 never heard from them I understand waiting times here in the UK to see people but never seemed like he cared and sorry I meant they always tell me I'm not invincible as I have the mind set ill live forever Haha and nothing will happen until I see a Dr and then they tell me I'm not invincible then. 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 in 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 lead 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 appt 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 specialist if they aren't willing to listen  pay attention and take there 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. Noone 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 its not the same Dr 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 to seem like he understood anything we told him. Previous breast Drs 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 lets just say I don't think he ever had the intentions of seeing us again as its 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 cant 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 as 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 was a happy ending not to scare you. 

😱 I hope it hasn't prolapsed to far out ...