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shez3535
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/30/2008 8:12 AM (GMT -7)   
Ok, I just joined this website because I really need some help from others who have Chrohn's disease.  I will breifly explain my story: I am a 31 y/o female I was hospitalized in Aug of 06' for 10 days.  I had a really bad perianal abscess which required emergency surgery, however, that was delayed a day becasue i was severly anemic, and had a blood infection.  After receiving 2 bags of blood, the night after I was admittted, i got surgery to drain the abscess and they put in drains, that stayed in for 2-3 weeks.  THe surgeon immediately suspected Chrohn's disease, and had a GI doc come see me, I had a colonoscopy while in the hospital, which results came back saying 85-92% that it is not Chrohn's.....however he started me on Asacol, and other meds: Valium for rectal spasm, flagyl, and Cipro for the abscess, prilosec,and I was on pain meds as well.  I think that is everything I was taking.  Anyway, I was on and off of the antibiotics for months following the surgery.....I was not healing and kept having a little hole near my rectum that would fill up like a pimple and then open(which was painful) and drain, and then would stay open.  Well last month (dec)  I had surgery to plug the fistulas that I had.  Well now I have another little opeing that is draining and hurting???  Does this sound like Chrohns?  My GI doctor and surgeon are not in agreement, the surgeon really thinks it is Chrohn's and the Gi doc is unsure.  He wants to do an upper endoscopy to rule out other things, and then posssibly start me on immunosuppressive therapy!!!  I am so confused and would appreciate the help of others with this disease.  I have had many other tests as well...CT scans, MRI, Small bowel series...etc.
Please help.....Thanks for your time

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/30/2008 8:45 AM (GMT -7)   
What a confusing, painful and frustrating journey you have been on.

If it is not crohn's what differential diagnosis has the GI offered. I'm not a doc. I don't know what else could be causing such a persistant problem with abscesses and fistulas. So what is he suggesting is causing your problems?

I do not know why they would be recommending immuno-suppressent therapy if they think it is not crohn's. Humira and Remicade have both been shown to be very effective at healing fistulas and abscesses caused by crohn's disease. Is that what they are talking about placing you on?
Belleenstein:

30+ years living with Crohn's.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/30/2008 8:49 AM (GMT -7)   
I say find another GI....perianal abcesses/fistulas are related to crohns, they're not even related to ulcerative colitis...I'm with the surgeon on this one...a colonoscopy alone doesn't always rule out CD especially since a colonoscopy does not reach throughout the small intestines.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


shez3535
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/30/2008 8:59 AM (GMT -7)   
My GI really hasn't come up with any other diagnosis. He just says that he wants to rule out other things like celiac. However in the research I have done I really think that I have CD. On top of all of the problems I have listed I have also Dropped 50lbs in the last year. And I would say about 30lbs since this all started in August. I don't know of the names of the immuno therapy he was talking about, he said that it would either be a shot I would give my self every 10 days or I would go in to the hospital once a month for a 5 hour infusion. This is very confusing and fustrating and hard to deal with the not knowing!!

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/30/2008 9:06 AM (GMT -7)   
Hi and welcome to hw!

I am with the surgeon also....My gi refused to give me a crohs diagnosis for over a year, and my surgeon said crohns from day one....guess what....I have crohns. I found a new gi. I have had many abscesses. There is a 50% chance that when you have an abscess drained, it will make a fistula. It sounds like this is what might have happened. The fistula plugs aren't recommended for people with crohns. It sounds like because of the plugs you may now have another fistula. The shot is called humira, the infusion is remicade. With the fistulas, remicade would probably be your best bet. I have been on it for over 3 years. Oh, and it isn't a 5 hour infusion...It takes around 3 hours.
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