I'm new

I registered and posted something earlier today but my post is gone and I had to re-register. Is that a normal occurrence?

I'm 38 and have had Crohn's for over 20 years now. In 1995 after suffering through constant obstructions and pain, the doc's found a stricture and I eventually had my terminal ileum resected.. Since then, I haven't had another stricture or nearly as many symptoms as before..

The one thing that hasn't gone away, however, are the fistula. I had my first fistula before I was ever diagnosed with Crohn's. Overall, they've been manageable -- annoying, but manageable. This changed when I was pregnant with my daughter (she's 3 now) and I have been plagued with new ones popping like crazy. I had a C-section specifically to avoid causing problems with the fistula but I think just the pressure of carrying a child to term was enough to cause mega problems. I have at least seven "active" spots that will drain at any time.

I can be totally symptom free of Crohn's, but the fistula still are active and I'm getting them in weird places. The newest one is high on my inner thigh like right outside of where your underwear sits. If I were to go to the beach, it would be visible in my bathing suit.

I'm wondering if anyone here has had a similar experience??

Hi Sidders
and welcome

sorry can't help you, no experience of this, but lots on here can, glad you found us
lotsa luv
Joan xxx

Hi - oh wow - I can't imagine having that many fistulas...I think I had 2-3 at once.....

Has your doc suggested any types of treatment for the fistulas? Mine went away when I started remicade.......

Well.. of course med's present another problem. I'm uninsured. I'm really hoping that the health care reform bill they passed comes through.. supposedly I'll be eligible for the high risk pool in July. Keeping my fingers crossed.

How do you take remicade? Is that some sort of IV treatment?

Welcome - I can't help with your questions, but hopefully you get the answers you are looking for. Remicade is a drug that is delivered by way of infusion. I have never been on it, but it may be the next step for me. Others can definitely offer more info.

Sidders...many pharmaceutical companies will help people who are unable to pay for therapies (yes it is very expensive). If your doctor agrees to prescribe it for you, you can contact Centocor and talk to them about their indigent drug program. The information is as follows:

Centocor
Remicade Patient Assistance Program
(866) 489-5957

Best wishes too you and welcome!

Sidders - yes, remicade is an IV infusion....

There are alot of posts and threads about remicade, here is one for ya, welcome to the forum!
http://www.crohnsforum.com/showthread.php?t=4544&highlight=Remicade