• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newly Dx'd & Would Love Your Information

Hi All!

A little about me - 26 year old female that works in Nuclear Medicine (no I promise I don't make people "glow" for a living! ha)

After 6+ years of trying to self-diagnose, several doctors, a lap chole, 3 EGD/Colonoscopys, an allergist, and 2 GI docs...I finally have an answer. I was diagnosed in June 2012 with Crohn's - although not what I was hoping for it's nice to have an answer.

However, I still don't feel "good" - sure I feel better than before, but even while taking 1000mg of Pentasa 3 times a day I still have terrible pain/gas daily, mainly on the left side. Although the GI doc that finally diagnosed me was wonderful, she didn't specialize in Crohn's, so I'm off to see a new GI doc next month. I have a feeling that wheat, dairy, something isn't setting right with me - but seems no matter what I try I'm in pain. Any ideas? Can't wait to spend the sleepless nights reading these discussions!!
 
Hi RAD8U,

Welcome aboard even if I am sorry you got this diagnosis. I'm sure you'll get a lot of support here and make some friends too.

My best advice would be to find out what foods trigger your flairs, almost everyone has foods they have to avoid. The best way to do this is by keeping a very thorough food and drink diary with comments on how you feel after each consumption of food and/or drink.

In my case I can't eat beef or pork (so I won't even try any other mammals). I also have to avoid fresh vegetables but I can eat some veggies if they are boiled until soft. Most of us avoid spicy foods.

I hope you reach complete remission soon and stay that way a long time.
 

Angrybird

Moderator
Hello and welcome to the forum :)

I agree that is worth keeping a food dairy to try and pinpoint problems foods. Although given the symptoms you are still having Iwould advise currently that you try a very bland, low residue diet to see if this helps ease things at all. Another thing I was wondering is whether the Pentesa is the only med you have been given since diagnosis? Usually steroids get used to hit the inflammation and then a maintainence med gets intoroduced to keep the tum settled. One thing I would ask the GI is whether this is really the right med to be on - whilst it does get used for crohn's it is actually approved/created for the treatment of ulcerative colitis and most here tend to find that it cannot keep the crohn's in check and they need a different med.

Please keep us updated on how you get on.

AB
xx
 
Thanks Angrybird and AzJohnny! I would have never thought of meat! I think I have wheat and dairy stuck in my head as an issue - since this is what the allergist had me remove for 6 months, so it's my "fall to" idea. I have started a food diary and will see what I can find out.

I'm trying to remember exactly what meds I had - let's see if I can recap.

After 1st set of scopes (March 2010) I was told to try probiotics, didn't help much, and omeprazole. Then after my referral to an allergist I was taken off the omeprazole and put on cholestyram (since I had a lap chole after the 1st set of scopes). The cholestyram didn't help so I stopped that one. After 2nd set of scopes (Feb 2011) was given Azulfidine and had a terrible reaction to it. I was then referred to a GI specialist who did a 3rd set of scopes (May 2012) and was given Bentyl and Pentasa (1000mg 3 times a day) after the Crohn's diagnosis.

I am seeing a GI who specializes in Crohn's next month and am hoping to discuss different mediations or ideas to try.
 
Top