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I was diagnosed with chronic Ulcerative Colitis in 98 and had total colectomy and j-pouch construction done in 99..
After that still had some problems, but was able to adapt and have a somewhat normal life..The last few years it was like my UC returned and was sick all the time, severe cramps, Pouchitis, abscesses and developed a fistula..went to my colerectal surgeon and was told I had fistulizing Crohn's .
That supposedly it can happen after 10 years of happen a J-pouch..
I guess I'm just sick and tired of being sick and tired..What I'm wondering is, is remicade just a bandaid ? Or will it get rid of the fistula and symptoms or should I go to permanent bag? And if I do will I finally be healthy or still have problems...I just don't know what to do and any advice would be greatly appreciated
Crystal

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Crohn's is highly variable, and no one can predict for sure how yours will go, assuming that the diagnosis is correct. "Just a band-aid" may not be answering the right question. If it makes your life better than the alternatives likely would, then it sounds like it 's probably worth a try. Surgery has *no* guarantees.

Scott F

Here's my take. If you have Crohn's, you will still have Crohn's whether you treat it with Remicade or other options, such as pouch removal and ileostomy. You cannot know if Remicade will heal your fistula unless you try it. It does not work in all cases. In some cases it closes the fistula enough to be manageable, but not completely heal it. Some cases it is ineffective. Even if you opt for an ileostomy, you may still have active Crohn's that requires treatment.

 

It it were me, I'd try the Remicade or whatever else was available and save surgery as a last resort. But, I've been on biologics for 10 years without issue, so they do not concern me much.

 

Jan

Jan Dollar

yup i would definitely be trying Remicade first. good luck.

 

fwiw, for five years or so my doctor has recommended flipping to a perm ileo, but ive punted using first Remicade, and now Humira with methotrexate. I unfortunately think the Humira has run its course and after my scope on Monday may be swapping meds again but so it goes. at least at present while far from perfect i still have my 29 year old jpouch.

deweyj

I agree- try the Remicade.  I was on Remicade for r/v fistulas and it totally helped me for two years.  After that I had to stop and couldn't get back on it, but for two years I did well!  I hope it helps you, too.

 

For what it's worth, I now have a permanent ileostomy since I finally ran out of options after Remicade.  I have a Crohn's diagnosis, too.  I'm doing so well now and just pray that the Crohn's doesn't show up anywhere else.

 

Laura

LHetti
So do you think a permanent ilieostomy gives you a better quality of life? I guess I'm asking because I am just so sick all the time and just want to be able to do the things I want to do minus all the problems .My colerectal surgeon suggests I get a permanent ileostomy but I'm just confused as to what to do..I am waiting for approval for Remicade but just not 100% sure as to what to do.. And also it is great to hear you are doing well..I wish you the best of health
C

Remicade was helpful though.  I felt good and only had to go for infusions 6x a year.  (Setons were still in the r/v tracts at the same time).

 

For me, I do have a better quality of life with the ileostomy, but I did exhaust all my other options first before making that decision.  Permanent is permanent and I was scared too of having issues AND an ileostomy.  Praise God that all I have to "deal with" now is the ostomy care.  But even then, some people have issues with that.  It's a hard decision!

 

Laura

LHetti

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