Crohn's Disease Forum » Surgery » Stoma Subforum » HELP my stoma is shrinking and retracting

05-11-2014, 08:52 AM   #1
Vincent Vega
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Join Date: Aug 2012
Location: Hamilton, Ontario
HELP my stoma is shrinking and retracting

hey guys my stoma surgery was about 9 weeks ago and 2 days ago I noticed it stared shrinking and I think part of it has retracted , I have anxiety disorder so i been freakin out , it seems to really shrink and retract when I lay down to the point of pretty much exposing the wafer to soilage. I am thin and have severe Crohn's so that could contribute? I have no pain nausea or cramps and my output is normal. However when I feel a poop I remove my bag and push down on my shrunken stoma so the poo can just plop in the toilet this has caused more bleeding than I like to see but it has kept the poo from leaking underneathe wafer. Im on ODSP so I cant afford to change my appliance like 4 times a week, i called my nurse , she will visit me in a day but I'm still scared, what if I need another surgery? I cant handle it I feel emotionally drained Im only 29 and the last 3 months have been hell I actually think about suicide alot but i cant hurt my wife like that. any advice on shrinking?retracting stomas?

thanks everyone
05-11-2014, 09:32 AM   #2
Nyx's Avatar
Join Date: Jan 2010
Location: Barrie, Ontario

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Have you tried a convex wafer? That helps a lot of people. You can call the ostomy companies and they'll send you free samples and help you decide what you need on the phone...they're very helpful!

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

05-11-2014, 09:35 AM   #3
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superzeeman's Avatar
Join Date: Oct 2012
Location: Mapleton, Minnesota
Sorry that you are having problems. It would be best that you talk to your medical professional and get it sorted. I had the opposite issue. My lengthened a bit and it freaked me out. I was afraid that it was going to prolapse and be 7 inches long as that can happen. It stopped though. Just keep a cool head and you will be alright. If you have to have another surgery that would suck but you may just have to deal with it and have it done. BTW, I suffer from anxiety too. Thank goodness for Xanax. lol
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05-11-2014, 10:24 AM   #4
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Join Date: Jul 2013
Location: Ontario

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Hi Vincent. I see you're in Hamilton, I'm in Burlington. Your stoma changes a lot after surgery. Talk to the nurse but try not to worry. It's probably nothing.

Yousaid you're on ODSP. Have you applied for the assistive devices program? You can get $800/yrs as opposed to the typical $600/yr. Also let your case worker know your having appliance issues and are using more than anticipated. They can give direction for extra help.

Get well soon.
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05-11-2014, 12:53 PM   #5
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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Vincent I'm sorry you are having stoma issues. It's only 9 weeks now so you can still expect changes.

Prolapse and retracting are generally not dangerous and surgery is usually not needed. Your stoma nurse will likely recommend convex and a belt to help it pop out a bit. Sometimes people barely see their stoma but it poops fine. Let us know what the nurse says.
05-14-2014, 06:37 PM   #6
Bourbon Bandito
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Join Date: Jul 2010
Location: Toronto, Ontario

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I was at 38mm for months and then one day I noticed that it had shrunk down to 29 mm. Just to reiterate 9 weeks is early on, when you consider that the earliest that they want you to consider going back to work at a desk job is around the 8 week mark. I was noticing changes for the first 4-6 months.
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05-14-2014, 09:02 PM   #7
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Susan2's Avatar
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

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My stoma sinks below the surface, too, so I use Coloplast Alterna deep convexity together with some Brava strip paste to fill in the "valley" that runs out from the stoma. It seems to be the only deep convexity bag that is available here in Australia.
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
05-15-2014, 09:35 AM   #8
Vincent Vega
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Join Date: Aug 2012
Location: Hamilton, Ontario
hey thanks for all the replies. The shrinking and retracting have seem to stabilized. Sometimes it puffs up, then shrinks down, I still poop fine just worried because it seems to only shrink when i lay down then it pops up when Im upright. I have quite a bit of output at night sometimes and the poop can sometimes be like diarrhea so i worry about that leaking underneath the wafer and skin problems. I just hate obsessing over this fucking stoma, drives me nuts.
05-15-2014, 04:36 PM   #9
Kat24's Avatar
Join Date: Aug 2013
Location: Reading, United Kingdom
I used to obsess over mine!ive now had it 6 months and apart from having a few night leaks I forget its there,it will get easier

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