Help! Stoma Prolapse Scare - Need Advice!

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Squeaky52
Aug 06, 2020 10:39 pm

Hi everyone/anyone,

I had my end ileostomy surgery on 6/16/20, and I had the scare of my life about 2 weeks ago. My stoma prolapsed (at the time, I had no idea what the correct name of this was), and it was very frightening because I truly thought a snake had crawled up in my pouch and was moving around.

My husband rushed me to the ER because we had no idea what was going on, and believe it or not, the ER staff was just as terrified as I was! Long story short, they put ice on my stoma, and after about 2.5 hours, my stoma retracted.

I am so scared of this happening again. My surgeon said he can go in and put a mesh over my stoma, but he would have to open me up. Does anyone have any advice? Has this happened to anyone else? If so, what did you do?

w30bob
Aug 07, 2020 12:00 am

Wow..........It's terrifying just hearing you tell us about it. Never looked into the subject much........It can get that big? Good thing you weren't watching the movie Aliens at the time.......You'd have thought one of them was inside you. I'm going to Google stoma prolapse right now. Glad it worked out for you, but I can imagine your fright!!

Regards,

Bob

Posted by: Karen & Stella
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Past Member
Aug 07, 2020 12:35 am

I do know someone else this happened to; she was pregnant at the time it happened. She consulted her doctor, who told her that it would likely revert once the baby was born, and it did. I don't think it has happened since. Has anyone in the ER suggested putting sugar on the prolapsed stoma, as a desiccant? If there is swelling in the stoma, it may be due to edema, in which case, it may help to put sugar on it, and let it try to shrink on its own. Seriously, there is literature on the internet about this as a treatment method. I would want to try anything before resorting to a surgical solution. You should see an ostomy nurse to try and figure out why this has happened. Hopefully, this won't happen again. I can imagine it was scary!

Please let us know how your situation gets resolved. Good luck.

Laurie

Squeaky52
Aug 07, 2020 1:15 am

Thank you Padfoot for your response.

I actually did see online about the sugar....I'm praying I do not have to actually experience this again....

Bill
Aug 07, 2020 7:27 am

Hello Squeaky52. 

Thanks for sharing  - I don't have any experience of this myself but there were a couple of posts from the past which were on this subject and the one quoted below had some of the more interesting replies.

( See 'Collections- Premium content - ostomy problems' Posted by delgrl525, on Thu Jul 30, 2020). There may well be other posts but I only trawled down a page or two until I found the one that I remembered. 

Best wishes

Bill

 

My Ostomy Journey: Bruce | Hollister

Play
TerryLT
Aug 07, 2020 6:48 pm
Very helpful

Hello Squeaky, this very same thing happened to me just over two weeks ago. A very long portion of my bowel came out (I'm estimating 6-7 inches) and it was terrifying. Mine would not go back in with ice and their first attempt to get it back in while putting me under anesthetic failed. Second time under anesthetic with the surgeon doing the honors worked out. I'm living in fear of it happening again. I've seen the surgeon and was told that it may or may not ever happen again. Great! One thing I've been told is to really watch it and if it even starts to come out a little, put some pressure on it with your hand and it will retract. Mine occasionally feels like it might be trying to but it retracts immediately when I put a little pressure on it. You could also wear a hernia belt for extra support. When I say "watch it" I don't mean literally. I can tell by the feel if it might be starting to act up. On the other hand lately I've been wearing a two piece Hollister with a clear top piece so I can literally watch it if I want to, plus I can get at it if I need to. If it does start to come out and a little pressure doesn't work, you can try putting sugar on it while lying down (not easy to do and messy) but it sounds like in your case the ice did the trick. Good luck and fingers crossed!

Regards,

Terry

Puppyluv56
Aug 08, 2020 2:13 pm

Squeaky,

Wow, that must have been scary, with being a newbie to an ostomy, even more so. I have never had anything like that happen but because of this site, am prepared for just about anything! Glad things worked out for you. Welcome to the site! Glad you found it! Good to see another South Carolinian. Just a few of us on here!
Puppyluv

Carl
Aug 09, 2020 3:24 pm
Very helpful

Hi Squeaky,

Oh, that brings back memories. My recovery was going well and about a month after surgery, I was raking leaves, well under the weight limit set by my surgeon. Afterward, I noticed something unusual in my pouch, which I thought was just stringy poop. I ignored it at first, and a couple of days later when I went to change my pouch, I realized my stoma had prolapsed into the bag. I use a two-piece talking system and was about to get into the shower when I took the pouch off and ended up with a large ball of intestine in my hand. I live alone, so here I was trying to get dressed and call 911 with one hand while holding the prolapsed stoma in the other. It was quite a surprise to the ambulance crew, and I even had nurses come into my room and asked to take pictures of it. Unfortunately, my prolapse did not retract, so I had to have surgery.

I noticed that although under the weight limit, things such as raking, sweeping, and mopping the floor, which required the use of core muscles, would cause pain around my stoma. I learned to keep my hands closer to my body when doing these chores. It seems that when you extend your arms, you use more core muscles and create problems for the stoma.

Looking back, I can laugh at it now. But, you're right, it was terrifying at the time. I hope you found some of those helpful.

Carl

Squeaky52
Aug 09, 2020 11:36 pm

Hi Carl

Thank you for the response, it gave me a giggle at the end because I can picture you looking back on it now and having a chuckle ....you are absolutely correct in the sense that any time I use my stomach muscles my stoma tends to move around and try to expand so I tend to hold it in when I'm sweeping/mopping etc...I see my surgeon again on the 17th so I'm hoping we can put our heads together and come up with results

Carl
Aug 14, 2020 8:23 pm

Laurie,

Maybe I should've gone into a little more detail. We did try sugar twice before resorting to surgery.

Carl