06-07-2010, 01:04 PM   #1
New Member
Join Date: Jun 2010
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??
06-07-2010, 01:22 PM   #2
Astra's Avatar
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
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


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery


No-one should make you feel inferior without your consent!

06-07-2010, 02:30 PM   #3
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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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.......

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-07-2010, 02:45 PM   #4
New Member
Join Date: Jun 2010
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?
06-07-2010, 02:52 PM   #5
Senior Member
MapleLeafGirl's Avatar
Join Date: Apr 2010
Location: Hamilton, Ontario
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.

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
06-08-2010, 07:35 AM   #6
Join Date: Apr 2010
Location: warner robins, Georgia
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:

Remicade Patient Assistance Program
(866) 489-5957

Best wishes too you and welcome!

Currently on Humira and Entocort
Multi-vitamin and B12 injection
06-08-2010, 08:00 AM   #7
Lisa's Avatar
Join Date: Apr 2010
Location: New York

My Support Groups:
Sidders - yes, remicade is an IV infusion....
06-08-2010, 12:20 PM   #8
Crohn's 35
Inactive Account
Join Date: Oct 2009
There are alot of posts and threads about remicade, here is one for ya, welcome to the forum!

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