20 year Anniversary

I was diagnosed with Crohn's disease when I was 13 & 65 lbs, as a female active cheerleader it was very difficult to accept. But I knew that I wasn't going to let it get the better of me. Even though it did for a long time...I have not been hospitalized from Crohn's nor have I had any surgeries (but think I probably need to).
My treatments were Predizone (45mg) for several months. I eventually got off but only to get back on shortly after. I have done the Asacole, Immuran, and finally when I was 20 Remicade was introduced! That was awesome. I have NEVER been in Remission but came very close with Remicade (dosing every 3 months). Even did the Remicade while pregnant, twice, and both were very healthy girls! But then the complications started...on going infections even MRSA. So I was forced to get off of Remicade because my ENT believed after 2 ear surgeries (1 on each) the Remicade was the source of it.
I am now on Cimzia 400 mg & Methotrexate 2.5mg a week and I'm still having difficult times. Mostly controlled but not currently...I believe parental stress contributes to this but, well I'm still going! My husband has been great and I have really only had 1 HUGE flare up in our 6 years of marriage so he is lucky there.
So, I have lived with Crohn's for 20 years and still no Remission Hoping you all can help me find answers once and for all!

Hi BadGut and welcome

I'm sorry to hear you've never been in remission. That's terrible

You mention Cimzia and 2.5mg of methotrexate. Are you sure it's only 2.5mg or methotrexate or did you maybe leave a number out? I just want to make sure you're getting the proper dose

Out of curiosity, what are your specific symptoms and have you ever tried any diets or dietary changes?

Again, welcome!

Hello and welcome to the forum, I am sorry to hear that you have not been able to reach remission in all this time

I was also wondering what symptoms continue to plague you? When was the last time you had any tests/scopes done to see what things looked like inside?

AB
xx

David said:

Hi BadGut and welcome

I'm sorry to hear you've never been in remission. That's terrible

You mention Cimzia and 2.5mg of methotrexate. Are you sure it's only 2.5mg or methotrexate or did you maybe leave a number out? I just want to make sure you're getting the proper dose

Out of curiosity, what are your specific symptoms and have you ever tried any diets or dietary changes?

Again, welcome!

Click to expand...

Thanks for the correction! I was mistaken in my wording and I am taking 6 -- 2.5mg tablets a week so 15mg a week.
Diet is a major play in my health meter. I have always had to watch my diet...expect for when I was on Remicade then I could eat Popcorn, corn on the cob and salads...all the NOs in Crohn's.

Thanks!

Angrybird said:

Hello and welcome to the forum, I am sorry to hear that you have not been able to reach remission in all this time

I was also wondering what symptoms continue to plague you? When was the last time you had any tests/scopes done to see what things looked like inside?

AB
xx

Click to expand...

I had a colonoscopy 2 years ago September which was my 3 or 4th ever, anyway the Gastro Dr found lots of scarring and the Crohn's ilium was NOT active but apparent and in the colon there was obvious colitis.
Compared to many on here...I am currently not so bad. I am in a flare-up of bloody diarrhea, usually when I'm having this I'm having to "go" several times in an hour but this time around I am only going 3xs a day. But those three times I'm running, barely making it and it is basically water.
I do blood work every 2 months and last week went to the doctor and am waiting for the stool testing results.

My biggest complaint is that my upper respiratory, sinuses are causing me to lose my hearing and as a teacher that is a problem. My ears ALWAYS feel full and nose is clogged. I have 4 specialists trying to figure out why I keep getting chronic sinus/ear infections and we've tried the IV Antibiotics but my Crohn's acts up so bad (because can't take meds when on those meds) the only thing "they" know for sure is that CROHN'S IS THE CULPRIT OF IT ALL.

In summary my symptoms currently are diarrhea and sinus infections.

Thanks,