Temporary Ileostomy

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Bonwilsky
Regular Member


Date Joined Dec 2006
Total Posts : 22
   Posted 1/30/2008 12:56 PM (GMT -7)   
I need some help.  My husband has a persistant case of rectal-fistulizing Crohn's.  He's been taking Remicade every 6 weeks for a year now and everything was going great until he had to delay a treatment by 3 weeks because of a sore throat.  Since then, 2 or so weeks after the treatment, life gets really difficult.  After that 2 week mark his fistulas flare up, leak and bleed and his overall health goes way down.  He has one seton and two fistulas without setons.  The last time we talked to his GI, the doctor prescribed him Humira.  We are having difficulty getting it approved by our prescription plan and we don't have the money to pay $1000 per treatment.  Now the surgeon and the doctor are suggesting a temporary ileostomy.  My husband is 26 and is absolutely depressed at the thought of any ostomy, temporary or not.  He especially questions whether it would be worth it or not.  Is there anyone out there that has fistulizing Crohn's and has experience with temporary ileostomies and can answer questions?
 
- Did the ostomy help?
- Was getting the ostomy worth it in your opinion?
- Did your fistulas come back after the ostomy?
- Did you develop any fistulas at the ostomy site?
 
Thank you!
Bonnie
Wife to 25 y/o diagnosed with Crohn's in August 2006
Possible perianal fistula presence for 2 or more years 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4097
   Posted 1/30/2008 7:23 PM (GMT -7)   
I don't know about the ileostomies, but call the drug company that makes Humira...you may qualify for a major discount or free. Sorry your husband has to go thru this!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/30/2008 8:13 PM (GMT -7)   

I too have rectal fistulas.  I have been on remicade for over 3 years.  Did he try doubling the dose of remicade?  I am now on a double dose.  I had to delay treatment about a year ago for 5 weeks because of a nasty virus, and I got a new fistula, but once I got back on schedule it went away after a few treatments.  Has he ever tried flagyl?  Flagyl works really well for my rectal issues.  Alot of drs. use cipro with the flagyl and have had some luck getting fistulas to close that way.  I'm sure you have tried all this, but thought I would throw it out there anyway.  Even if he does go with the ostomy, he is still going to need some sort of maintenance med.

I certainy feel for your husband.  I have asked my surgeon to just give me a bag and get rid of my colon since that is were all my issues are, because then I wouldn't have to deal with any of those rectal issues that I have, but of course, he won't just because I want it....because the crohns would just eventually return farther up my gi tract.  I totally understand and agree with him, but I just get so tired of dealing with it all as I'm sure your husband does also.  I'm sorry I couldn't help with your ?s...hopefully you'll get some good answers.


Bonwilsky
Regular Member


Date Joined Dec 2006
Total Posts : 22
   Posted 1/30/2008 10:03 PM (GMT -7)   
Thanks for the responses! 
 
Gumby44 ~ I just found out about their prescription assistance and we'll be pursuing that!
 
Chroniemomx2 ~  We were both really disappointed when the Remicade stopped working as well.  The doctor has doubled it and then some and everytime he flairs up, my husband takes flagyl to keep the infection down.  Nothing seems to be working.
 
It is just so difficult to watch auch a vibrant, active, young man sit on the couch like an old person and sleep all day.
Bonnie
Wife to 25 y/o diagnosed with Crohn's in August 2006
Possible perianal fistula presence for 2 or more years 


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 1/30/2008 10:23 PM (GMT -7)   
There is also an ostomy forum that could help with your questions. Probably at least 80% of them had fistulas. I have read several times that quality of life has improved immensly with an ostomy, but facing surgery for anything is frightening. Good luck.
DIANNE
Humira, pred and entocort 1/08
3 small bowel resections, 1 for perforation, 2 for strictures 
 

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