What the heck do I do now?

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not creative
Regular Member

Date Joined Mar 2007
Total Posts : 469
   Posted 4/7/2009 4:23 PM (GMT -7)   
So, I went today to try Remicade again. I have three fistulas that have developed over the past couple of months and I was told that Remicade is really the best option for me. I tried it last year but had a reaction on my third infusion (which totally sucked because it was working really well).
The doc told me that it's possible that I reacted because of no pre-meds and said that they might help me to tolerate it better. So I went on 6MP, took four days of prednisone and and antihistamine and tylenol with the hopes of making it work.

No luck. I lasted about 30 minutes before I started to feel all hot and my chest got tight. I called in the nurses and when they told the doctor he said no more.

I'm so disappointed. He's putting in the order for Cimzia because the Humira didn't work. I so afraid that I'll just have to suffer if the Cimzia doesn't work either. These fistulas are awful-- two of them are close to my vulva so I cannot urinate without intense pain. This just plain sucks.

I really wish I could just have surgery and an ostomy, the disease is only in my rectum- I don't actually need that do I?
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: Started LDN about a month ago, Zoloft, Lialda and Imodium

Post Edited (not creative) : 4/7/2009 9:20:38 PM (GMT-6)

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/7/2009 4:32 PM (GMT -7)   
What about MTX injections?
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/7/2009 4:38 PM (GMT -7)   
(((not creative)))
Co-Moderator Crohn's Forum.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 4/7/2009 5:18 PM (GMT -7)   
I really feel for you!!! I too am allergic to Remi and it sounds like we had the similar reactions. I also am allergic to Humira and I wasn't happy to see the best medicines for fistulas taken from me. I am on 6MP now. My doc said the 6MP could calm down the inflammation and it has been a little help to some for shrinking fistulae. Are you still on 6MP? Once things calm down, I could go for the advancement flap procedure. If it works, that will be the end of the fistula!! Yea!!!

My only suggestion for cutting the pain during urination is that water may help. This may sound weird but try urinating in the shower. Or if you have a hand-held shower sprayer, try straddling the side of the bath tub and spraying while you go. Let me know if it help!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 4/7/2009 6:30 PM (GMT -7)   
Got an idea for the peeing depending on the exact location of the fistula. A friend of mine had a surgery on the lower part of her vagina. I didn't ask a ton of questions but it was a complication from giving birth. Anyway, the incision was really sensitive so she would take a big plastic drinking cup, place it right under the pee hole, touching the skin, and pee in that and then dump it in the toilet. It kept the urine from trickling down as it does and getting into the sensitive areas. Obviously this would be hard for you to do while out and about but maybe you could hide a cup in your work supply closet and use one at home too.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 4/7/2009 6:38 PM (GMT -7)   
Another idea along the lines of Fitzy's is to get one of those squirt bottles that they give you after you give birth, and to squirt water on it while you pee, so the urine won't touch the skin.
Have you tried flagyl to close them?

not creative
Regular Member

Date Joined Mar 2007
Total Posts : 469
   Posted 4/7/2009 8:19 PM (GMT -7)   
I've tried the shower thing, but the urine still hits them...I also have one of those squirt bottles but again, the urine still hits it.
I'm just so annoyed and frustrated and all I ever hear from doctors is "well this is a tough disease" yeah tough...you don't have to live with it. And I'm supposed to go about my life like all is well and grand and try to deal with this too? Yeah right.

I haven't tried MTX- I'm not very familiar with it but I'm still on the 6MP. Also, does anyone know if 20mg of pred daily will cause moonface?? He prescribed it but I'm a little afraid of getting moonface 6mos before my wedding.
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: Started LDN about a month ago, Zoloft, Lialda and Imodium

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