Ileostomy bulging and poking out severely. Need urgent help and treatment?

Aug 20, 2022 3:10 pm

Hi friends,

I'm new here and new to ileostomy life, so I'm really hoping someone can offer some help or advice...

Just to give the full picture, I had my surgery on 7th June 2022, so not even 3 months yet. My ileostomy 'lips' have been, for the first month and a half, very small and neat. When leaving the hospital, I was a 25mm.

On Wednesday 10th August 2022, I saw my surgeon and showed him a photo taken the day beforehand where the top lip of the ileostomy was poking out more than is usual for me, and he confirmed that it was prolapsing due to my weak tissue (I also suffer from hypermobile EDS). However, the bottom lip was still lying flat with my stomach as it always has done. My surgeon said this shouldn't be too much of a problem as we are planning to reverse the ileostomy after 3 months, so everything would be pushed back inside anyway.

Two days ago (18th August 2022) around 9pm, I changed my pouch as I had been experiencing itchiness and soreness for a few days in the area around the ileostomy and the actual ileostomy itself. However, when I took the pouch off, my lower lip (usually flush with my stomach) was so swollen and bulging. There was an awful smell coming from the ileostomy that filled up the bathroom (it doesn't usually smell at all). Both upper and lower lips were bleeding in all different places. It was stinging, low output, there is a hard bulge to the left-upper side of my ileostomy just under the belly button, and the lower lip was rock hard to touch and grey/blueish in color in places, and the top was squidgy and soft to touch. I've been experiencing really bad fatigue and have been sleepier than usual, and just feeling unwell and run down in general.

I tried contacting the stoma nurse and surgeon all day yesterday by email, by phone, by bugging the surgeon's secretary, but they still did not get in contact with me or even advise me anything.

My ileostomy has been like this now for nearly 48 hours and nothing is changing. It is still very painful, and I am having severe trouble urinating, and the output is low for me.

Any help and advice would be appreciated! Does anyone know what this could be???

S x

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Aug 20, 2022 4:08 pm

The odor sounds like a possible infection. Please call again with all of your symptoms - pain, bulging, odor, fatigue. Maybe you should go straight to the emergency department, especially since you are starting out with a condition like weak tissue. Better to have it checked out now. Your surgeon should take this seriously. Let us know how things work out for you.

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Aug 20, 2022 4:09 pm

P.S. Try not to be nervous, just be safe and have it looked at.

Homie With A Stomie NS
Aug 20, 2022 4:55 pm

No more waiting. Get to the ER and demand answers, hun.... The odor and bulging doesn't seem right. I am ileostomy since March/22 and my stoma is solid, mini volcano-shaped, no lips...

Please don't wait and keep us posted. We are here for you.


Aug 20, 2022 5:16 pm

By all means, seek help!

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Aug 20, 2022 6:40 pm

I see you're from the UK. Phone 111 or get family/friends or a taxi to take you to A&E to be on the safe side in case you end up with sepsis or go into water retention.

Aug 20, 2022 7:30 pm

I concur with the others. Get yourself to the ER, and please do let us know how you make out. Good luck!


Aug 20, 2022 10:21 pm

Hi, I agree with everyone else, you need medical help. Get to A&E at the hospital as soon as possible. Best wishes, please let us know how you get on in a week or so.

Aug 21, 2022 11:49 pm

Finding Hope, how are you doing?