Stoma Retraction Causing Leaks - Seeking Advice

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Firegirl25

Hi. I was wondering if anyone has experienced their stoma retracting? This has been happening to me more and more often. It is very painful and every time it happens it causes my bag to leak/fail. I was wondering what is done for this. I have an appointment with my surgeon in a few days. Any advice or information will be appreciated. Thanks, Dani

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badancer
Dani, had the same situation a couple of years ago. The stoma loved to retract and leak at night when I slept on my back. When the stoma retracts, the liquid works its way under the wafer, irritates the skin, and finds a way out. I had a crease from a scar which made a great place for it to leak. 95% of the leaks (and thus the pain) stopped when I began to wear a Nu-Hope ostomy belt to bed. Also used an Eakin cohesive seal around the stoma. The belt provides an even light pressure around the stoma area so it will not retract. This, for me, is a more comfortable situation than a leak and pain at night. I wear the belt in the daytime also. A little extra protection when out and about. Good luck. Roger
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mooza

Hey there, I can't completely say my stoma retracts in that much, but it does retract. I am now using a shallow convexity pouch. You can also get a deep convexity. Please have a word with your stoma nurse. Come down and see mine in Oz. We are old friends. Good luck! I am sure someone might know more than me. Mine leaked, so I just can't wear the flat pouch. Good luck, darl. Mare; Mooza;

mooza

Love the Cup dancer.. it's pretty shit though hahahah

Angel
Hi
Yes, I have a retracted stoma which I have had for 7 years. In the last 3 years, I have had leaks both day and night. I saw my surgeon after my stoma nurse tried all different flanges. Well, the surgeon said she would try putting staples in the stoma to keep it from retracting. Well, this did not work. So, back to the surgeon she then said she would try something new. She would inject the stoma with a substance that makes the stoma go hard, something like botox but permanent. Well, only half the stoma has stayed out. So, I am still getting leaks, and this was not cheap, $1000 a go.

I am now waiting to see the surgeon, and the next step is to reform the stoma. I can't wait. I hope this will be the end to my nightmare of always looking for the toilet, always afraid of going out just in case, and changing the sheets every night.

My surgeon told me that these ops do work on some people. I was just unlucky. I do hope that your surgeon will get you sorted. Good luck.
 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
mooza

Yep, that's true. Unlucky, what sort of stoma did you get? My first was perfect, but I had a choice at the time. Well, Crohn's fixed that up. Tell the surgeon or stoma nurse. Mine stoma nurse is my buddy in the hospital and is listened to, so they were re-siting to the left. Still not like the first, but I am lucky no leaks. Been there though, can't remember what operation. Good luck telling them you need your freedom. Bugger the surgeon. P.S. I hate them, sort of... Mare.

budd002

I am experiencing the same thing lately and after my last endoscopy all drugged up, I spoke to the ET nurse at the hospital. From what I can remember about the conversation... My caving is due to the mesh from my hernia operation shifting, causing caving in downwards of my stoma. She suggested I use a paste ring to build up the bottom of my stomach where it turns in.

Since I was still basically under sedation, I can't remember names of products but I have sent an email to my connection at Hollister explaining my situation and I'm awaiting her reply. My leaks happen mostly at night, sometimes during the day, but when the pain starts I try to get to the bathroom in case I have an eruption. If this doesn't work, it looks like it will be back on the table for me.

Does anyone know if a hernia mesh repair can be done laparoscopically? I'm quite happy with my little scar and don't want to have to go through that healing pain again....

And why do doctors and nurses explain things to you while you are still groggy?

Loopy369
I recently was admitted with a retracted stoma - so far in that I couldn't see any red tissue, just a tiny dark hole. I'd been constipated due to chemo antisickness drugs (I was constipated when I started chemo and discovered a rectovaginal fistula which is why I now have the transverse colostomy to stop leaking there). Still have issues with leaking mucous and blood - which as another topic would love to hear from success stories on such fistula repair. I cannot have a bowel resection or my redundant colon removed because of my terminal cancer state - recovery time would prevent chemo and that's all that's keeping me alive at the moment stopping the tumours growing.

The colon joined itself up again and I spent a week sitting in my own faeces, cleaning myself up hourly day and night in hospital with bleeding sore skin. The most humiliating uncontrollable situation. Utterly miserable. With a convex bag the stoma showed itself again and now has this bizarre habit of prolapsing and growing to the size of a satsuma or becoming flat and flush and only an inch in diameter - but so far no retraction.

Anyway - the actual point of my post.....

The bags I'm using now are Pelican Select Convex. They have an incredible instant seal! The flange is SO soft and comfortable on my skin it's unbelievable. Even if the outer seal lifts a little with movement, the convex part doesn't shift and I need adhesive remover spray to get it off. Because it changes in size so much I have to cut the hole a little bigger than the stoma at its smallest but skin barrier wipes have so far protected my skin and not a single leak. I'm on permanent laxatives so my output is only a bit thicker than with an ileostomy.

If you are able to get samples of these, I'd suggest you do, I was quite happy with the bags I had, and worried that a convex wouldn't suit me but I really barely notice it unless it's filling up and a bit heavy. There are different levels of convexity and mine isn't the deepest.

The only problems I really have now is if I need to change it when it's enlarged. I can't get the bag off and I can't get another one on so I try and get in there when it's small, safe in the knowledge that the barrier wipes have worked so far.
Doe1mama
Reply to badancer

My husband's retracts at times. Just read your reply. He never used the belt before. It worked almost immediately. Stoma started to protrude. Thanks

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