Crohn's and Treatments

[speccca]

I have been diagnosed with Crohn's for 15 years. Most of the time when I get a flare up, it is because I eat something I should not have. I deal with the pain when I am in pain. During the 15 years, I have only been in the hospital 3 times for this condition. The first was when I was diagnosed 15 years ago and twice this year (partial obstruction and bleeding). I have and no surgeries and for the past 9 years my pain episodes have been maybe 5 times a year and last only a day.

I have been on 6MP and Pentasa for the majority of the time to control my condition. According to my GI, I have Fistula's and the last time I was in the hospital they indicated that is what caused my bleeding. They now would like to put me on Remicade as a way to deal with the fistulas. Here is what I would like to know:

Most of the posts I see are from people who are affected by Crohn's far worse than me. Most of the people who take Remicade, it improve their condition (such as the pain that it appears they have regularly and prevents them from having a normal life). Since I am not in pain that often and I do not believe Remicade will improve the quality of my life even if it works on the fistulas. Does anyone have a similar condition to mine and what have you done as it relates to Crohn's?

I really don’t want to go on something that has some many issues and actual may not improve my condition or far worse make my life worse off.
Thanks!

 

[PsychoJane]

My condition is pretty different than yours. Mine was fulminant crohn colitis that lead to surgery in the past which allowed me to have about 10 years without symptoms and medication. My last "flare" and currently going I would say, is "mild" compare to what I had to deal with when the surgery was needed. Though, I have fistula and all GI I saw (I think I saw 3) were radical with the fact I needed to be treated even though I was only having that acting up.

The problem is that the presence of fistula in crohn is considered to be part of the severe or agressive form of crohn. I don't know if you are familiar with the fact that there are like 3 sub-types of crohn disease: the "inflammatory" crohn's which will result in inflammation of the mucosa and will remain mostly in the first layer of the digestive tissues, a bit like UC behave with the exception that granular tissues develop. Then there is the stenosing/stricturing crohns; which is the result of a lot of scarring of the internal tissus and implies narrowing and potential obstructions. Then there is the third one, which is the perforating/fistulizing crohn. In this type, the inflammation goes through the wall of the intestine and leads to the fistula, they can either/or be concentrated internally or concern the perianal area. One thing is sure is that they need to be kept in control because they are dangerous on their own with the possible complications to which they may lead (peritonitis, abscesses, connection to hollow organs, and so on) and plus, they can become horribly painful. What is quite annoying with fistula is that... they don't go away on their own. Treatment like Remicade and humira allow to keep them in control. Often, surgery will be needed to remove fistulas when it is possible and better option.

I can totally understand your doubt about the need of using such treatment with a stage of the disease that seems tolerable for you at the moment, but my guess is, if you are now having fistula with a medication that normally prevents them (6MP), then, the need to consider the biologics are important... otherwise you can't be sure of the complication that might be resulting. And did your GI had you started with Antibiotics (Ciproflaxone - Metronidazole (flagyl)?) they usually help with fistula.

 

[mdwright]

Speccca:

Although it sounds like my Crohn's is more severe than yours, Remicade is the one thing so far that I had a positive response to. I also had fistulas, in addition to the other "fun" symptoms like cramping, diarrhea, joint pain and weight loss (30 lbs. in a couple months). Once I began Remicade infusions, I started to feel a difference within a couple weeks, and by about week 6 I felt as healthy as ever. From my experience, I don't think you have anything to lose and a whole lot to gain by trying the Remicade. I didn't notice any side effects, and after the initial induction phase you only need to go in every 6-8 weeks for a maintenance infusion.