Stoma Recedes When Lying Down - Seeking Advice for Revision Surgery

Replies
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577
Hockeycards
Oct 10, 2023 10:29 am

Hello friends;

My husband has had a high flow ileostomy since April 22, 2023. The stoma stays out if he sits up. Once he lays down, it recedes to skin level or beneath. His weight is 142 lbs on a 5ft 11-inch frame, and his abdomen is loose but not overly.

Would like to ask the doctor to arrange for something to be done to suture the stoma out so he can lay down again. He is very exhausted.

Please help.

from Hockey cards

ron in mich
Oct 10, 2023 1:34 pm

Hi HC, does your hubby sleep on his back or side? I sleep on my side; otherwise, the output pools around the stoma and causes leaks. Also, has he tried using a wafer that's convex, which forces the stoma to stick out more.

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Morning glory
Oct 10, 2023 3:22 pm

I agree with Ron

Mysterious Mose
Oct 10, 2023 3:37 pm

I also agree with Ron. If you are not using a convex wafer, you should try going that way. Also, sleeping on one side or another is what we ostomates pretty much have to do. Laying on your back will almost always promote pancaking, which will promote leaks. My biggest problem is being a lifelong stomach sleeper. Doing that can cause bag explosions, especially if you are a gassy fellow like me. :-)

Daniel

Justbreathe
Oct 10, 2023 6:03 pm

I have a fair amount of output at night and I sleep on my side and sometimes almost completely on my stomach - if he can sleep that way it may eliminate leakage - I also have found (from folks on this site) that a slim barrier placed on my bag makes a world of difference regarding leakage around my stoma.
JB

 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

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Mysterious Mose
Oct 10, 2023 6:22 pm
Reply to Justbreathe

Heh. The first time I found myself on my stomach, the pouch had burst a seam and it was a heck of a mess. Whenever I wake to find myself stomach down, I immediately flip to my bag and start feeling for leaks. A lot of that is paranoia, but rather that than to foul another of my favorite bamboo sheets. :-)

Daniel

Hockeycards
Oct 11, 2023 12:37 am
Reply to ron in mich

My husband sleeps on his back.

He has heavy liquid ileostomy flow at night and sleeping on his side does compromise the convex flange or wafer and pull it away from the skin. He wears a belt tight to the body at all times. He is not entertaining any ideas regarding lying on his back due to paranoid thoughts of leaks.

I wish things were different and he could lay on his side. Up to a month ago, he was sleeping all night in bed wearing the deep convex 2-piece flange with no leaks. Just when the stoma receded while lying down that this need to sleep sitting up has been the only option.

Thank you for your knowledge and experience. I need to find a way to solve this problem.

Justbreathe
Oct 11, 2023 10:22 am
Reply to Hockeycards

We have an adjustable bed (similar to a hospital bed) because my husband cannot sleep lying flat. This is because he has sleep apnea and also before he was diagnosed with sleep apnea, he would have what I refer to as a mini panic attack if he had to lie flat. I witnessed this in a doctor's office, and the nurse said there is an actual name for it. The adjustable bed allows him to sleep at an angle. This may work for your husband. I have some friends who sleep in lounge chairs all night, which would be similar. Just a thought - hope you will be able to resolve this issue for him short of more surgery. JB

Justbreathe
Oct 11, 2023 11:31 am
Reply to Mysterious Mose

Hmmm - being a gassy fellow, perhaps a good name for your stoma would be …Harry Potter ….jb

Mysterious Mose
Oct 11, 2023 2:46 pm
Reply to Hockeycards

Personally, I would recommend wearing a belt tight to the body, as that tends to pull at the bag as you move around. Especially if it is worn while sleeping. The recommendation on those things that you there should be enough slack to insert two fingers between the body and belt. The purpose of those is to alleviate the weight of a bag as it fills. When I use a belt, I always remove it before I go to bed. But then, I do not have the issues your husband does. And I don't wear all that much as I use a Stoma Dome or a StomaShield, depending on the type of pants I wear. These preclude the need for a belt. Also, I am pretty active and do not sit for any extended period during the day.

Daniel

Mysterious Mose
Oct 11, 2023 2:51 pm
Reply to Justbreathe

Now that I have decided to be an ostomate for life, I have finally given my bag a name. But, I am hesitant to reveal it here as there is a certain percentage of the U.S. population that may be angered by it. And, in the past, I have stated that certain subjects do not belong on this site...

Daniel