Getting Healthy Story #2 – Chelsea
by Mark on Saturday, June 7, 2008 16:50This entry is filed under: permanent ileostomy
Here is the recent post from a young woman who literally has been to hell and back with her UC, failed jpouch and now perm ileo. The brilliant thing about this post is that in the face of all her health issues, she has found renewed health and she is a true inspiration story. Let us explain, having a permanent ileostomy is worst case scenario for a “failed” j-pouch, and when you read things like this, it helps you to remember that a perm ileo will give you your life back.
According to CCFA only:
“About eight to ten percent of patients will have pouch failure, which requires removal of the pouch and conversion to a permanent ileostomy.”
These posts might also help out:
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Kristin says:
June 13th, 2008 at 3:36 am
Hello!
Permanent ileostomate here who stumbled upon your blog through WordPress Tag Surfing.
I’m a Crohnie that was originally diagnosed with UC, and I had a jpouch for about 4 years before going back to the ostomy.
Thanks getting the word out…and thanks for recognizing that a failed jpouch is not the end of the world. Although mine was unsuccessful, I’d still encourage anyone with UC to try it once the time is right.
Best,
Kristin
[Reply]
mdhilton says:
June 14th, 2008 at 7:00 pm
Hi Kristin,
Great to hear from you! Yes, we think it is so important to acknowledge that jpouches can fail, but if it does that living with a perm ileo is hardly a bad scenario. I found having my temp ileo was serving the purpose of teaching me that if I ever needed a perm ileo it wouldn’t be bad. I felt great with ileo and I was able to live so normally. We watched your video on your site about CD/UC awareness and walk, what a great cause.
Mark
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BILL says:
August 10th, 2009 at 9:11 am
NICE TO HEAR YOU ARE DOING WELL. 18 YRS AGO I HAD J POUCH OPERATION. THERE WAS HEAVY BLEEDING DURING AND AFTER SURGERY REQUIRING AN IMMEDIATE 2ND OPERATION TO FIND BLEEDER. THIS CAUSED ALOT OF BLOOD CLOTTING THAT EVENTUALLY PASSED THROUGH THE POUCH. THIS CAUSED IT TO BECOME SCARRED AND WOULD NOT FUNCTION PROPERLY. HAD A TAKE DOWN AND THEN SPENT 5 WEEKS IN PURE HELL HOPING IT WOULD WORK RIGHT. I THEN GAVE IN AND HAD A PERM ILEOSTOMY. TOLD SURGEON TO TAKE OUT POUCH WHILE IN THERE. HE TALKED ME OUT OF IT AND LEFT IT IN. SINCE THEN I HAVE HAD SERIOUS POUCHITIS . I NEED TO DRAIN POUCH WITH CATHETER ANYWHERE FROM 3 – 10 TIMES A DAY. SOMETIMES IT ISN’T POSSIBLE TO INSERT CATH WHICH IS NERVE WRACKING. I AM TRYING TO AVOID OPERATION TO REMOVE POUCH SINCE THE INSTALL WENT SO BAD AND NEARLY BLED ME TO DEATH. GUESS I AM AN 8-10 PERCENTER.
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