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So confused!!

I was diagnosed with Crohn's Disease July 2010 after developing a fistula while pregnant with my son. My surgon does the seton and a colonoscopy and sends me to a GI. The GI right away puts me on Pentasa and Remicade. Now other than that fistula I don't really have any symptoms. I have never in my life had a flare up! I have suffered with constipation ever since doing a weight loss program that had me at 18 pills a day(yes stupid I now know but I was getting married and wanted to look good, I did lose 40 lbs though!) and lose BM after eating certian foods. What I'm confused about is why the Pentasa? I get that the remicade is for the fistula but why the Pentasa? I've read my medical records and I know that I'm not a DR but it says "evidence of past acute inflamation". I did the study where I had to drink the white thick mess and then have X-rays done and that did say that there was narrowing at the illeium but if I don't have ANY symptoms other than the fistula. Everyone I know that has done weight loss programs that involved pills has constipation issues and everyone has certian foods that tear them up, so why do I have to take a medication for symptom's that I don't have. Have any of you dealt with this or know someone who has dealt with this?
I would definitely talk with your GI on the reasoning for the pentasa. It may be he is using pentasa for maintenance to prevent other flares just a suggestion though. In my experience ifvyour not sure as to why younare on a medication definitely ask questions don't be left confused. Good luck to you


Hi, Steph!

A few questions for you. When you were diagnosed, was a colonoscopy done and were biopsies taken? Were any other tests you didn't list done? Since starting treatment, have you had scopes done to confirm that there is no active disease?

Pentasa is sometimes used with another medication, just to give it a little boost (as Pentasa is relatively safe and gentle). However, it's usually not very effective and it's very possible that the Remicade can take care of things on it's own. I would definitely talk to my GI about it if I were you.

However, it's possible that the Crohn's was aggravated or caused by the weight loss pills and you just hadn't suffered a flare up and symptoms yet. Maintaining treatment will prevent that from happening (and trust me - you want to prevent that :p ). It seems annoying, but it's much easier than a flare. Have you read up on all of the possible symptoms of Crohn's, and are you certain you don't and never had any of them? There are a lot of symptoms, many of them seemingly unrelated to the digestive tract.

But, if scopes and biopsies weren't done, that needs to be done ASAP. Without biopsies, it's hard to be certain of your diagnosis.

:hug: I hope things work out for you!
@mwkwmn - I have asked several times and all I get is "because you have the disease"

@SarahBear - I had a colonoscopy done July'10 but other than the original blood test to test for infections and the one with the X-rays (I'm sorry I don't know what it's called) I have only ever had 1 more blood test done in October '12. She has never given me the results of the biopsies she just say's "you have the disease".

I know it seems like I have let a lot of time go by with out doing anything about any of this and it's true I have. I wanted to deal with it as little as possible and just pretend to be "normal". I want to be a "normal" 28 yr old married mother of two who can spend her time worrying about kids colds and ear infections not spending my time at Dr's offices and worrying "will I develope cancer from the Remicade? will I develope cancer from the crohn's? will I have a colomosty bag some day?" I'm sorry to go off in every different direction but I am just starting to actually think about my disease and deal with it.
Educate yourself on the material on this site about the medications you are on that will help ease your mind. I believe you need to like and trust your physicians tobget the most of your plan of care. Good luck to you