Need some feedback from some old hats

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letsdance
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/30/2009 8:31 AM (GMT -7)   
Hi I am brand new here so I hate to have my first topic so long but I feel like I have no one to bounce stuff off or to offer imput. I am in desperate need of some outside opinions. Docs seem to have their mind made up before they even hear how I am actually feeling physically.

Here is my history in bullet form:

-severe pain started about 2 years, went misdiagnosed for uti's for over a year
-diagnosed with crohn's after hospital stay for severe infection this past summer, started Pentasa (it wasn't absorbing though, could see it all in stool)
-Severe pain throughout the fall
-Had colonoscopy disease limited to the ileum where they said it was thick and bulging
-Told to go on a biological treatment or steroids
-At christmas In desperation changed diet and symptoms literally disappeared (except when I made food mistakes) and the pentasa seemed to be absorbing.

-feeling better actually started eating more, even fibre, but as I started having more gas I realized that there was gas coming through vagina

ANYWAYS I went to my enterologist today he said based on my past imaging and a visual look at the rectum he is confident that the fistula track is coming from my ileum. And even though my ileum doesn't hurt on palpatations I am having no pain he wants me to do the biologicals. Here is where I am so confused, everything I have read says biologicals rarely close Internal fistulas, furthermore the fistula could have happened during the time where the inflammation and pain were bad (fall). However he doesn't want to do any new imaging to try and determine whether the inflammation is active. I even suggested I could go pay for an mri but he said if he didn't see inflammation on it he would still suspect it was there. I asked to be referred back to the surgeon (i'm in canada where we can't call specialist without recent referral) but he kept insisting he wanted to medicate me more so I let him write me a script for entocort ( which I also don't understand because I thought steroids were bad for trying to heal fistulas or before surgery). I don't really want to take it though because I FEEL FINE (except for the fistula) I know there is still some narrowing in the ileum because I do get all sorts of loud gurgling when the food gets to there but my hang up is I don't want to put biologicals in my body (and have to stay on them for a few years) when i don't even know if I have active inflammation or the narrowing and fistula are a result of the long undiagnosed unmedicated flare.

What are your thoughts on this mess, I am so confused and frustrated because I simply do not know how to proceed from here. Thoughts, ideas, questions? I just don't agree with the take this med and see how it works without even determining if I really need it.

also what is the deal with this entocort?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/30/2009 11:12 AM (GMT -7)   
I can only comment on what you said about "the fistulas are a result of the long undiagnosed unmedicated flare", that is not necessarily true, some crohnies are actually prone to fistulas regardless of being quickly DX or being on meds...I'm either allergic or non-responsive to tradtional oral RX and in my 18 yrs of having this dreaded disease have luckily never had a fistula, same with many others...far as I know remicade is suppose to be very beneficial in aiding with fisutlizing crohnies (don't know why your doc hasn't thought to go that route for that reason), maybe ask your doc about using remicade to treat your fistula? Where in Canada are you? I'm in Alberta.

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


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/30/2009 11:25 AM (GMT -7)   
Entocort is a steroid that is not absorbed into the blood stream quite the same way as prednisone, the more traditional cure all for Crohns. So it doesn't cause the same side effects as prednisone, thus the extensive long term damage. But Pb4 is right that Remicade is suppose to be good for fistulas, but Flagyl can be used to treat fistulas too. Mainly you want to treat the fistula with something and if whatever you do isn't working keep tying until you find something that does. I have a fistula that my doctors couldn't find, and so they didn't treat, now its just permanent. I wish I had pushed for treatment, but that was before I became my own best advocate!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/30/2009 12:07 PM (GMT -7)   
I would second Zanne's suggestion of Flagyl. It's one of the best things for clearing up fistulas. You're right that there's no evidence that any form of prednisone does anything for fistulas. If the Flagyl didn't work, then you could consider 6-MP, which sometimes works to close fistulas. So you have it least a couple of options before you need to decide on Remicade. Enteral nutrition (liquid diet) can sometimes close fistulas also, but they take awhile to heal so you have to be willing to stick with a liquid diet for a substantial length of time (probably at least a couple of months). Anyway, those are just some options.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/30/2009 12:08 PM (GMT -7)   
I forgot to say, fistulas can be sneaky and not show up on imaging, so sometimes it's better just to go ahead and try treatments if you're pretty sure they're there.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/30/2009 3:34 PM (GMT -7)   
If you have gas coming out your vagina, then why does he think your fistula is internal? Fistulas can be so hard to find, that by visually looking at your rectum he can not say positively that the fistula isn't coming from there...also, past imagining doesn't matter one hoot if you weren't experiencing fistula symptoms then.

MRI is the best tool for detecting fistulas. I have been on remicade for 4 1/2 yrs, and I still experience fistulas from time to time....so....yes, you can get one even while being medicated, and even while feeling decent. If it were me, I guess I would try to get into another gi for a second opinion.
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