Living with a Retracted Stoma: Seeking Advice and Shared Experiences

I had an ileostomy performed in Nov. 2011.  Within 4 weeks my stoma retracted; now I have a very small hole in my stomach (smaller than the size of a dime) that I wear a convatec moldable wafer over.  I have 3-4 regular BM's/day and a small amount of pretty liquid waste goes into my bag each day.  My doctor has offered to "revise my stoma" so I won't have problems with leakage.  I don't have any problems with leakage so that isn't a reason for more surgery.  I still have a big decision to make though so any advice is welcomed!  From age 20- age 58 I had constant pain almost every time after eating.  I could hardly ever have a bowel movement and after many, many doctors and many, many tests it couldn't be determined what was wrong.  Finally a doctor said to me, " we could try a temporary loop ileostomy" to see if it improves the quality of your life.  I know this was an extremely drastic move but I was getting so desperate to stop the pain, I "went for it."  At first, after the ileostomy, my stoma "stuck out" about an inch.  The problem was, nothing would come out of it and I had to irrigate it every day (and I thought that was only done if one has a colostomy).  Once my stoma retracted I started to eliminate waste sometimes the natural way and sometimes into my bag (pouch).  More and more, though, I am having pain for hours after eating and nothing is moving.  I just don't know what to do now!  If my doctor "pulls the stoma back out" I am afraid I will have to start irrigating again and I think that is kind of dangerous with an ileostomy (plus very inconvenient).  Does anyone have a similar situation or can anyone give me any advice?  I have been dealing with these kinds of problems for far too long now!  I feel like my whole adult life has been spent trying to solve the issue of stomach pain; I live on pain-killers and other meds!  Help please!



Thanks,

Tello

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I have the opposite problem too much especially at night, after dinner.  It all goes back to your food.  I have to take morphine because the side effect is constipation and that stops it from constant flowing.  Just maybe those pain meds your taking do have the side effect of constipation so I would check into that issue.  Also have you tried a digestive enzyme or even accidophilus.  Not all digestive enzymes or accidophilus are the same.  So you may want to research on the internet or talk to an herbalist.  I have been in the herbs and vitamin world for along time, and I know what works for one person may not work for another.  I do know it is very important for you to have the output because if you become blocked or constipated too much here comes another disease for you to deal with or even weight gain, headaches, acid reflux, and also not being able to sleep at night.  It does sound like the doctor didn't make your stoma as it should be for output, but if you can take a step forward and try to correct this problem by the suggestions above maybe you won't have to go into surgery again.  Good Luck

Butterfly 48

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I do three things for mine.  #1, I use Eakin seals under my Coloplast wafer for innies.  This helps with seal.  #2 I use Ileosorb or ParaSob packets in my pouch to turn liquid into gel.   #3 I take Choliestromine (spelling?) for the side effect of constipation.  It's a powder form cholesterol med that is easy to adjust dosage as necessary.  1/2 dose daily or every other day works for me.



good luck!

Hello

Am having a revision on my stoma TOMORROW the 14th as my stoma had retreated like a weasel in  a hole. Mine was causing much leakage so my Dr said revision was the way to go.

I will let you know if you want to how it goes!!

Alice Anne

When I had my loop it retracted allll the time! I would be able to push it back out when I took my bag off as it got painful and having the waste going into my body it made me quite sick!

There's not much I can suggest other than, when I ate more than normal it grew and popped out and I wore convex bags all the time.... Other than that it may require your doctor to take a look and re-fashion it for you x

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden