Stoma shrinkage and leakage problems

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Joannie Crohnie
Regular Member

Date Joined Oct 2005
Total Posts : 68
   Posted 5/7/2007 7:01 PM (GMT -6)   
I've had my ileostomy since 1990 and my stoma always stuck out enough that I've never had problems with leakage.  In the past year my stoma has shrunk alot and doesn't stick out like it used to and I'm having problems with leakage. 
I'm a 43 year old female (yeh, I know everything starts to sag, LOL) and wondering if anyone else has had this problem and what products solved the problem.  I'm looking at trying out the Eakin seals as I've heard good things about them.
Diagnosed with Crohn's 1985
Ileostomy 1990
Symptom free for 13 years
Multiple draining fistulae 2003
Currently on Imuran (Feb 2004) and Remicade (Oct 2004)
Diagnosed with Diabetes 2005
Currently keeping close eye for drug-induced Lupus from Remicade

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 5/8/2007 9:34 AM (GMT -6)   
I have not had these issues since I am a new ostomate and mine is temporary. From what I have read they have different kinds of wafers. They make some for stomas that do ot protrude that much. You can look for them on any of the websites from the different ostomy manufacturers. I started with holister at the hospital and I have had pretty good luck only a few leakage problems but i have more complications currently. I still have my wound vac on and the wafer overlaps the dressing for that.

I did web surf and I hear that you can call or contact the companies and they may help out with samples. As far as hollister they have links right on the product page that say free sample. I have gotten a few things this way that have been helpful like their new image line of bags are covered with fabric. Once I get the wound vac off I am going to try this (since the wafer is a different one I dont want to try it til the vac is gone). I hope it will make the hot summer days more bearable. I think it will be more comfy than a warm plastic bag sticking to your leg.
Dx with Crohn's 1987, symptoms as early as 1984.
Temporary iliostomy February 19 2007
Ovarian cysts dx 1994, migraines dx 1996, allergies (including food allergies) , oral allergy syndrome (sligtly different than true food allergies), Astham dx 1984, Gall Bladder removed 1999, Inguenal hernia Sx 1987
Protonix 40 mg, Nuerontin, oxycontin, dilauded, Folic acid 1 mg, Vitamin b12 1000 mcg, vitamin b6 100mg, Diflucan 100mg, vitamin A, Multivitamin, Elavil 100 mg, Zanaflex 4 mg, asmanex, singulair, foltix, probiotics
As needed: Albuterol inhaler, relpax, nebulizer (albuterol ), have an Epi-pen but hope I never have to use one.

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 5/10/2007 7:34 AM (GMT -6)   
i would get your doc to look at that...i thought stoma sizes were supposed to remain pretty much the same?? someone correct me here if i'm wrong plz!

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 5/12/2007 2:15 AM (GMT -6)   
Your stoma will shrink some after surgery. You might want to have it checked out. I know that a retracting stoma can be a sign of disease returning to the intestine. Don't get alarmed though. I'm no doctor and I'm only speaking from my own experience and by talking to my doctor. Have it checked out. It's probably nothing.
As for the leakage. I know many people who like Eakin Seals. I've tried them but I prefer the paste. I think it's just a matter of preferance and whichever one makes you feel more secure. you might want to try a convex wafer or insert. It makes the stoma stick out a little and helps reduce the chances for a leak.Also, I always "picture frame" my appliance with hytape. It works the best for me. Unfortunatly trial and error is the only way to find out which works best for you. My first year with an ostomy was very frustrating for me. Although, I only leaked a few times, it was always at the most inopportune time and made me feel very insecure about leakage. Now I never even think about it. I haven't had a leak that wasn't my falt(trying to stretch out another day with the same appliance)in about 16 years.

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 5/17/2007 10:53 PM (GMT -6)   
My stoma did this when I had more disease, way before I had any pain. I use a convex wafer with an Eakin seal under it, and always use no-sting barriers for the sting when it does leak. I have to change mine every day, and probably will until I have another surgery and/or revision.
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade, now on antibiotics and prednisone, currently awaiting liver biopsy to see where we go from here.

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