Stoma Retraction (or, changing my flange 8 times in 24 hours)
by Jenelle on Saturday, June 20, 2009 11:39
Since I got home from the hospital, my stoma has been somewhat retracted. I have a loop ileostomy now, so I have two pieces of my intestine forming my stoma instead of one. The working part retracted quite a bit, but went to the point of near disappearance a couple of days ago. Because the stoma was flush with the skin and my skin was sort of concave around the stoma, the output started to continually break through the flange (and by continually, I mean it broke twice at work and a total of 8 times in 24 hours). It was an incredibly frustrating and painful day (my skin is a disaster). I used ever flange I had, and had to go to the medical supply store at 8am in desperation to find out what to do. Thankfully, a woman there called Coloplast (I usually wear their products) and got some advice on which products would work.
I thought it might be useful for anyone who has this happen in the future to know that the basic idea of what to do is to use a convex flange and a belt to help keep it in place. It’s working for me now and the stoma is starting to come back out again, it seems. Also, a retracted stoma is not dangerous or any type of emergency. I was pretty panicked when it first happened since I’d never even heard of it happening but my surgeon wasn’t concerned at all. He did arrange for me to meet with a stoma nurse but he didn’t bother changing the appointment that I had already had for week later, which I actually found reassuring (especially since my first concern was that it was going to completely disappear back inside my body somehow!).
Eric says:
June 21st, 2009 at 8:23 pm
Hi Jenelle, sorry to hear about your retraction issues. I had the very same problem with my loop ileostomy, the leaky seal, etc. My ultimate answer, also, was the convex wafers, self sealing. It was a really difficult few weeks for me. Hey, I wanted to clarify something for the rest of our readers, some of which might be parents or relatives, spouses, friends, etc. When you say you have “two pieces of your intestine forming your stoma instead of one”, that’s not right. I know what you mean, but it’s still really just your one intestine. There is still only one piece of intestine sticking out of you, it’s just cut open to make an exit for waste instead of having the end of your intestine sticking out. That is to say, instead of the “end of the tunnel” sticking out of you, you have an opening created before the end of the tunnel, and that opening is what’s sticking out of you. Does this make sense? Hang in there, it gets better!
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Eric Reply:
June 21st, 2009 at 8:31 pm
Oh, and even if your stoma completely disappeared into your body, your waste would still come out. A life-threatening issue would only result if your intestine somehow detached from your belly’s surface and you started emptying your waste into your perineal cavity. Thankfully, if you did leak into your perineal cavity, you’d know, without a doubt, that something was wrong within minutes. That sort of leaking is what happened after my second surgery when my intestines were perforated somehow. This is not to downplay your issues, they are serious and very difficult to deal with. I’m just trying to say, I’ve been there – you’re not alone. Thanks for the post, and hope to hear from you again soon!
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Jenelle says:
June 25th, 2009 at 6:17 pm
Thanks for sharing & for the clarification, Eric. Things are already looking better & the reversal should happen in the fall.
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JC says:
September 21st, 2009 at 11:30 am
I am going in for surgery in the next couple of weeks.
What can I expect after my surgery with regards to pain. Can I sit at me desk after a week and type? Also, once they reconnect in the next couple of months. How long before I can bike ride? Get on a plane? Swim? I hear stories about leakage. Isn’t it put a damper on quality of life? Thanks for your responses.
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Mark Reply:
September 22nd, 2009 at 5:54 am
Hi JC, I didn’t have much actual pain, I did have discomfort in that my belly area felt tight and after a few weeks from surgery 1 that let up. Yes, you should be able to sit at your desk and type after your first week from surgery, although you’ll probably get tired pretty quickly after that first surgery for the first few weeks. And then after your “takedown” surgerey you should be back to work and feeling good much more quickly than surgery 1. This is of course pending on if you are having a two step versus a three step surgery, and if you are having it done lapro or open? These links are to my surgery journals, and should give you a good idea of the questions you’ve asked and others you may ask –
Colectomy surgery: http://www.jpouch.net/photos/surgery-1/ Living with ileo: http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/ and Takedown surgery: http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/
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