major problems

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New Member

Date Joined Jan 2007
Total Posts : 16
   Posted 9/17/2008 9:38 AM (GMT -7)   
I got my colon taken out in may to get an ileostemy for an eventual j pouch surgery. I liked the original surgery but unfortunately I got a major small bowel obstruction from scarring within a month. I had to get surgery again and the problem with that was the had to make the incision about an inch over from my stoma. I now have a major wound there and there is no way of securing an ostemy bag over my stoma now. I have about 7 leaks a week and I'm unable to attend class or have a social life. I hate having leaks and having feaces on me. I am severely depressed and stressed out. This is the worst thing that has ever happened to me in my life by far. I still have to wait til december to get my j pouch attached and I just don't know if I can go on much longer like this. I need help or advice from anyone that may have been in this situation.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 9/17/2008 3:21 PM (GMT -7)   

Please let us know what products/appliances/etc. you are currently using so that we can help you.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 9/17/2008 5:16 PM (GMT -7)   

cworyhill--don't get discouraged!  I've been there, too...definately list the items you are using.  That will help us figure out what might work better for you.

How long ago was your surgery?  Was it in June?  Is your incision healing? 

When I had my new incision and stoma, I had to cover the incision with gauze and leave the portion of my wafer unattached, but I used an Eakin seal so that the area around the stoma stayed attached and I also used an ostomy belt which I wore tight to keep things from moving too much.  


Regular Member

Date Joined Jun 2008
Total Posts : 94
   Posted 9/17/2008 5:22 PM (GMT -7)   
i would talk to an ostomy nurse or even your surgeon. they may be able to give you some advice. my bag doesnt get stuck down on one side (where my belly button and incision are). my incision opened up so i have to pack the wound with gauze, so the gauze gets in the way of the tape. i had a lot of problems with leaks, but i found that the paste helps the bag stay in place longer and it created a better seal so nothing leaks out. although sometimes when i change my bag i still see some stool on my skin, but at least it doesnt get out and smell as long as the bag is on. if you call the company that makes the bags they may have some advice too. good luck!
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008

Regular Member

Date Joined Aug 2007
Total Posts : 212
   Posted 9/17/2008 8:43 PM (GMT -7)   

EHOB makes a non-adhering ileostomy system you may want to look into. EHOB (Non-Adhesive Ostomy Systems)
Ostomy product line was acquired by Nu-Hope. Contact Information: Nu-Hope Laboratories, Inc., P.O. Box 331150
Pacoima, CA 91333-1150 800-899-5017

Also, check out their webpage at

I've used their products when my skin was in bad condition after the first few months.

Maybe you'll be able to slip gauze between your wound and the EHOB system since there is no adhesive with this device.

Good luck. Let us know how things work out for you. Edgepark Medical also carries the EHOB system. Their toll free number is 800-321-0591.

Regular Member

Date Joined Sep 2008
Total Posts : 489
   Posted 9/19/2008 9:49 PM (GMT -7)   
lworyhill I no longer have my ileostomy but when I did I had alot of messes and I know how you feel.Make sure that you talk to your DR. about the depression & get help for it. If I would have got help for my depression I would never have had to have the ileostomy.My twin sister died after a surgery because of a blood clot. I did not take care of my problum with depression tell I messed up my life bad enuff that I felt like my famialy would be better without me and I hurt myself very bad.I came very close to dieing.So now I take my meds. please talk to your DR. about this.
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