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Fistulas and Crohn's and surgery..scared

Well I'm diving right in. I've had Crohns for decades now.Initially thought to be UC, had a J pouch put in, been a long, winding road of various successes and failures. NowI have fistulas, I'm on Remicadee, cipro and flagyl and am so close to being ok, just like 15% shy of that, now they recomend an ileostomy.
I want a temporary one, The doc says it will clear it up. but can't guarantee forever.. who can? anyone got a similar story?
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I have not had this type of surgery myself so could not advise, we do however have a stoma sub forum that is worth having a look at as the folks here will have some info for you: http://www.crohnsforum.com/forumdisplay.php?f=46. What symptoms do you still get in that 15% of not quite getting there? Has the Remi made any improvement at all on the fistula's?

Wishing you all the best and please keep us updated on how you get on.

AB
xx
 

annawato

Moderator
Staff member
Welcome to the forum Johnny, as AB said the stoma sub forum will be of help. Hobbes also was diagnosed UC, had a j pouch with various complications and then found out he actually had crohn's so a similar story to you. He now has a permanent ileostomy but a temporary one may be of help to you to allow the fistulas to heal.
I'm on to my second ileostomy, but my disease is in the small bowel and I get intestinal abscesses not fistulas. The ileostomys have been to allow healing of the bowel after resections so different story to you.
Anyway check out the stoma forum - there are loads of people there who can advise you. (The stoma sub forum is under the general discussion heading)
 
Hey there, thanks for getting back you guys, I'll check out that forum..so the 15% I refer to is the fistulas that are left, they are in geographically bad spot and get irritated, the only time I'm good is lying down or not moving!

the Remicadee is awesome though it has literally cut my bathroom trips in half! I've gone through full workdays forgetting to go tothebathroom! can't remeber the last time..
why did they call it a stoma? ugly name
It's just that i'm so close to having a iliosomy free exisitance.. for now
thanks everyone! look forward to more pow-wows!
 

annawato

Moderator
Staff member
Great that the remicade is working for you, maybe it will fix that 15% and save you having to have an ileostomy? Anyway I'm sure you GI and surgeon can advise whats best. Good luck.
 
thank you! but it is 15 percent I just cant get.. I find that Specialists make big arbitrary decisions kinda for you.. they don't really care about your life after you leave that office/hospital.
Now I find myself bargaining and arguing with Docs while they stand with thier hands on the doorknob.. that's not doctoring..
rant over.
I just hope we can try a temp ileostomy and give the body a chance with the Remicadee.
I also realize that my problems arent that huge, and my heart goes out to the females with similar problems to mine, I think thier situation sucks more than mine.
Lets hear it for the Ladies!!
 
off to surgeons today.. moment of truth!! the good thing is that i have just had fresh batch of Remicadee in me and is reacting well, so I'm going in lookin good! Is there a Remicadee subforum? thanks all for your best wishes!
 
I can relate, I'm 15 percent short too, I'm waiting on reversal of loop colostomy and I also am having problems with a fistula/sinus, I'm meeting with my gastro doc on fri to see what he's going to throw into the mix! Everyday this disease seems to throw up a new challenge.
 
:sign0085::sign0085:thanks y'all, so being in a better state today the surgeon has decided that we do minor surg, and adjust the seton drain situation going on right now..a naorrow escape!
now I gotta find setn drain people.. where you at?
 
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