Help my stoma has sucked itself back inside 😱

[MyStar86]

Hi, I’m really worried my stoma has sucked itself back inside so now it’s flat to my skin no dongle bit 😭 I don’t know why this happened I was in a lot of pain last night and naturally it’s sore but I changed it after my bath yesterday and it was fine but now today I changed it and it’s now not protruding anymore. I don’t understand what’s happening and I’m really worried…..I’m guessing this will now leave me open to leaks and things it still works fine but I’m really scared and confused why this has happened. I’ve contacted my stoma team but they take forever to reply and could be days so I wanted to reach out for help thank you Helen

[Dogbot]

Helen the first thing I would do is contact my doctor for an emergency appointment if not have you emailed the stoma nurse? , go to your nearest hospital and find the stoma nurse or A&E , but please get it checked out 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

[MyStar86 in reply to Dogbot]

I have an ileostomy so it’s meant to stick out and it always has done so I don’t know why it’s decided to do this but I’ve contacted my stoma nurse who is sending me a belt I already use convex bags and barrier rings so I hope it doesn’t leak as ileostomies are much more watery output so being flat to the skin is not fun and it’s already gone very sore so I hope it pops back out again I really do thank you for your reply xx

[Dogbot in reply to MyStar86]

I have an ileostomy as well got mine in January 2020 so I’m with you,but I would still like you to get it checked out. It’s probably nothing at all but I’ve not heard of it before. Good luck from the wife and I 💕💕

[MyStar86 in reply to Dogbot]

I spoke to my stoma nurse and she said it’s totally normal when the bowel is working hard and thankfully it actually popped back out today so hopefully it will stay back out now. My stoma nurse is sending me some belt to clip on to it that can apparently help but she is calm about it and has heard of it lots of times the IA association also got back to me and said the same so that’s good I’m just glad it’s popped back out again as that was so scary 😧 but I’m happier and glad I kept calm as it was a worry but not a&e I knew my nurse would help she just takes her time as they are so busy xx

[Dogbot in reply to MyStar86]

Oh great news fantastic, well I’m glad you got a response from the nurse and also please you gave us all a bit of information on what the stoma can do 👍💕💕

[MyStar86 in reply to Dogbot]

I think mine got weakened as I had a biopsy taken from my stoma in July during my last surgery which had affected it and made it a lot harder when outputting so it makes eating anything with fibre in harder but I think that’s why it retracted as I had a meal with a lot of carrots and didn’t chew them enough so it was struggling to get them out and somehow retracted itself I have a feeling it will be in and out now till my surgery but hopefully once I get a new one it will be a lot stronger and I won’t be letting any more biopsies be take my bowels have been sliced and diced enough xx

[Dogbot in reply to MyStar86]

Sorry to hear you have had to have a lot of surgery it’s not nice, but you’re right a lot of chewing and then some more. Good luck xx

[MyStar86 in reply to Dogbot]

It’s ok I’m hopeful that this will be the last one and then I can get my life back as I love my ileostomy it has changed my life but I’m still left in agony but this next surgery will hopefully put an end to that so whilst I’ve had my fair share I’m counting on it being lucky number 11!! Thank you for your kindness and for your advice i definitely need to be a better chewer when it comes to carrots!!!xx

[Dogbot in reply to MyStar86]

Ha ha ok 👍 the best of luck with your next surgery, wife and I sending all our best wishes 💕💕

[MyStar86 in reply to Dogbot]

Thank you so much to you and your wife 💓 it means a lot because only those that have been through it truly understands xx

[OldTed60]

I think perhaps it depends what kind of stoma you have - but mine is permanently flat and always has been. It sometimes sticks out a little when it’s active or warmer and retracts further when it’s cold. It also changes colour a little with heat or cold - like Raynaud’s which I suffer from as part of my condition. I use convex bags with small hard flanges and despite it being small and flat it doesn’t leak. But I make sure to place the bags with care and pushing down hard with warmest area of my hand - usually after having a hot bath or shower and use barrier spray to help it stick. I have a loop colostomy. I think ileostomy’s are supposed to be elevated but not so much colostomy’s

[MyStar86 in reply to OldTed60]

I have an ileostomy so it’s meant to stick out and it always has done so I don’t know why it’s decided to do this but I’ve contacted my stoma nurse who is sending me a belt I already use convex bags and barrier rings so I hope it doesn’t leak as ileostomies are much more watery output so being flat to the skin is not fun and it’s already gone very sore so I hope it pops back out again I really do thank you for your reply xx

[OldTed60 in reply to MyStar86]

I hope yours pops back out again too. I know that ileostomy output is typically more liquid but actually my colostomy output is very liquid too because I have slow transit so rely on powerful laxatives. This and bile malabsorption were were the reason my surgeon refused to give me an ileostomy as she felt it too dangerous. I still don’t leak much at all but my skin is very dry so the bags stick hard and I’m always aware that things might change.

[MyStar86 in reply to OldTed60]

I’m not side if you saw my previous replies but I wanted to let you know that it popped back out 🎉 I had a protein bar as I know they make my output vicious and that somehow managed to get it to come back with the force of the output so I’m really happy and glad I kept calm!! Thank you for your advice and support xx

[JerrysGirl3]

I don't have an answer but I hate that it's taking so long to get a doctor appt!! Do you see any signs under the skin of "fluid" spreading or is it just coming out of this now flat place? Any signs of infection? Can you see stoma at all?? I change my pouch every 2-3 days. It is a short stoma and VERY active. All. The. Time. I've often wondered what would happen if it suddenly "went under" 😳. Please if you don't feel good or show ANY signs of infection you will go to ER. And call your team again and insist they make time to see you.

[MyStar86 in reply to JerrysGirl3]

I don’t think you saw my last reply but I managed to get it to pop back out but it’s very temperamental however I’ve found having a protein bar does the trick as It sends my output crazy and vicious which gets the stoma to pop back out. Yes it has made the skin very sore but I have powder, barrier rings and convex bags to help it but I’m happy it’s back out now. My stoma nurse said it’s totally normal for the stoma to do it when it is struggling but it’s terribly painful when it happens. I have to change my bag daily otherwise it just gets too sore since it retracted its damaged the skin but I’m trying to get on top of it but it’s such a pain when it’s very active changing it can be a real shit show like it was today meaning I can’t even put the powder on it 😣. Than you for your reply xx

[JerrysGirl3 in reply to MyStar86]

Believe me. I know what you mean and I'm glad the issue was put out there because I never would have thought it could happen so thank you ❤️❤️. I use the powder too with some no sting barrier blotters. I think I also have a hernia under my stoma 😳

[MyStar86 in reply to JerrysGirl3]

Oh no I’m so sorry to hear that I haven’t go experience with hernias have you seen your stoma nurse they will be able to help you hopefully. I know I was so shocked when it happened and it’s happened 3 times since as well but having a protein bar seems to sort mine out as the fake sugars in them sends my output so crazy that it seems to push the stoma back out…..mine isn’t a small one either so that’s why it was even more of a shock but I’m happy I now know what to do as my stoma nurse wasn’t much use except to say that it’s normal xx

[JerrysGirl3 in reply to MyStar86]

Don't have a stoma nurse or team. Handle everything myself cos no one interested in helping me. And I have 4 leukemias on top of that !