New here

[jacquelinet]

Hey im new to the forum looking for some suppourt because i often feel alone with my stomach problems. Im 26 years old from mass. I got diagnosed with Crohn's when i was 14. After i got diagnosed i got into remission quickly. Later in life i had two daughters which my Crohn's gave me some trouble but was able to be resolved with endicort. Ive been having a flare for the past 3 years now and nothings working i honestly feel like im dieng maybe im dramatic but predisone didnt work. Remicade gave me an allergic reaction. Mericaptipurine they are stopping because my white blood cell count went to low. And the endicort is not working. Idk what to do anymore i just need people who understand what im going through:sign0085:

 

[DJW]

That's so difficult. My heart goes out to you.

Has the GI specialist discussed other treatment options?
Sending you my support.

 

[jacquelinet]

My doctor stinks he wanted me to continue tge remicade even after the allergic reaction

 

[SarahBear]

Welcome to the forum!

I'm sorry to hear what you've been dealing with. If you don't mind sharing, what was the reaction you had to the Remicade?

I hope things start improving for you soon! :hug:

 

[InkyStinky]

I'm so sorry to hear all your struggles!!!!

What are your options for GI doctors? Can you get another doc in your area/on your insurance? (If you are comfortable sharing country/area, folks might have recommendations. There's also a Dr. directory on this site with reviews.) Are there any medical colleges/teaching hospitals in your area? My current GI is associated with our local medical college/teaching hospital and he's fantastic. CCFA (if you're in the US, or CCF-whatever if you're somewhere else, also has Dr. directories).

As for meds, have you heard of/looked into Vedolizumab (Entyvio)? http://www.crohnsforum.com/forumdisplay.php?f=319

Maybe a clinical trial? Are you in the US or Canada? Here's a trial (SSI) going on in Vancouver:
http://www.crohnsforum.com/showthread.php?t=60661
http://www.qucrohnstrial.com/participate/who-can-participate/

There's also stuff going on with anti-MAP research -- I think there's maybe a US trial going on? I haven't followed this as much as the SSI so hopefully others can chime in here!

What do you do diet-wise? Take a look at the diet sub-forum: http://www.crohnsforum.com/forumdisplay.php?f=17
Diet is so individualized but I hear a lot of great things about the GAPS diet. (I'm in gut-remission working towards a GAPS-esque diet myself)

I've had my share of less than stellar GIs over the years, so I know how hard that is!!! A good GI makes such a huge difference - I do hope that you aren't totally stuck with just one option!