(No Subject)

Hi,

I'm new to the group and I really need some advice. My daughter has was diagnosed with Crohn's roughly
8 years ago-she is now 22 yrs old. She has taken Pentasa, 6mp and is now on Humira weekly. Over the last 15 months she has been hospitalized more than 6 times. She has been on Humira for approximately 2 months and it seemed to start working a little a few weeks ago and now she is getting worse all over again. Does anyone here have the issue of this? We are just about at the end of our rope. She doesn't notice a difference with food. Actually, she has been in so much pain she throws up 3-4 times a day and has lost about 20lbs in the past 2 months. We are in the process of changing GI Dr.'s We are wondering about Remicade and the possible difference/benefits of using this medicine. I apologize for rambling, but I am grasping at straws at this point trying to find help for my daughter. She had a wonderful pediatric GI Dr, but she aged out and since then we have truly struggled finding a decent Dr. This disease is different for everyone and you can't go textbook with everyone :( I would appreciate any advice anyone could offer.
Blessings,

EmiSue

That's wonderful! My daughter has talked about trying that medication next. It's so much a trial and error. May I ask if you ever had an issue with bacterial infections? My daughter has seemed to have had issues with stomach bacterial issues. Every time she is in the hospital it's the same round of antibiotics & she improves slightly then we start this vicious cycle once again.

You absolutely need a GI that you have total confidence in. They're your life line.

Remicade is still considered the best state of the art drug available for Crohn's treatment. Usually one will start with Remicade, then Humira, if there's issues, although some, obviously including yourselves, go it the other way around.

I would also have her checked out for any other issues. C-Diff was mentioned, but since she's been throwing up, perhaps a blockage, of scarring has formed.

Get a new GI, and then some up to date diagnostics. An MRE is the least invasive and will tell you alot.

Good Luck, and I really hope she's feeling better soon.

First, thank you all so much for all of the kind well wishes & information!! It seems as though so far I have had to self inform myself much of the time! Kasbern, you asked about stomach bacterial issues... the Humira lowers the immune systems & allows for overgrowth of bacteria. She has been tested for gluten issues and so far that isn't an issue. She has had contrast CT scans and no blockages appear...along with upper/lower GI's. The pain that she is dealing with right now & for the past year that is so painful is the center of her stomach just about her belly-button. 73monte, I was kinda surprised when they jumped over Remicade to Humira. Then again, as I stated we haven't had much faith in this physician. Stef17, we are in the process of changing physicians to Wake Forest University which is a teaching hospital. The Dr. that we are switching her to is a specialist on with Crohn's! Finally a Dr. that this is only what he does!! I'm sorry I can't specifically tell you the bacterial issues without looking at the medical records again. It's just something in her stomach that overgrows due to the Humira. I do so appreciate all of the information. It helps me just to talk to others that are going thru similar situations. I feel like for the past few years I have fought an up hill battle just trying to get physicians to listen to me & my daughter. She has been so very sick & her get up and fight is just about up. Thank you all very much!!