Misdiagnosed :(

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Rachael W.
New Member

Date Joined Nov 2007
Total Posts : 4
   Posted 11/20/2007 4:01 PM (GMT -7)   
I was diagnosed with ulcerative colitis about 2 years ago, and just found out that I was misdiagnosed and actually have crohn's. I know that they're pretty similar, but it feels weird to suddenly switch. I've tried a lot of other meds, none of which worked well long-term, so I think I'll be going on remicade soon. Any advice about remicade or crohn's?

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 11/20/2007 6:19 PM (GMT -7)   
You probably have Crohn's colitis, which is crohn's in the colon. From my understanding in non-medical terms, the difference between crohn's and colitis is that crohn's affects all the layers of the intestine (goes down deep) and colitis only affects surface level layers.

I've been on remicade just short of 6 years and it has been a life-saver for me. In fact, I don't know what I'd do without it. I hope you find that it works long term for you. It's frustrating when you're trying to find the meds that work for you.

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 11/20/2007 7:07 PM (GMT -7)   
Welcome Rachael,

We are glade that you found us but sorry you have to be here under these conditions.We will be glade to help you in any way we can.Remicade is a wounderful drug and it has helped alot of people that has not responded to other meds,so good luck and please let us know how it goes and please do continue to post.

Regular Member

Date Joined Sep 2006
Total Posts : 181
   Posted 11/21/2007 10:21 AM (GMT -7)   
I too was orginally diagnosed with UC and later it was switched to Crohns. Remicade has turned my life around. I know can function as I did prior to becoming sick. Next month makes one year on Remicade for me, I feel like I should celebrate it with a cake or something :)
want_2_be_well AKA Mel
32 year old Female
Diagnosed with CD 2006, had been ill off and on for over 10 years.
Also have seasonal allergies, milk allergy, and asthma.
CD Meds: Remicade every 8 weeks, Imuran 50 mg, Pentasa

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 11/21/2007 3:25 PM (GMT -7)   
Hi Rachael Wecome to Hw we are glad you have joined us and yes it must `seem a little weird to get rediagnosed with Crohn's .I had IBS for years and now Crohn's .I was on Remicade for 6 months and it helped heal my fistula. So I am hoping you do good on it. I learned alot here and have found this to be a great place ,we care about each other and help each other. I also found low roughage diet helps me. I have been following that since Jan. when I was DX. THe Rem. was not too hard to get done and I did not have problems getting it done. It was stopped because I wasn't completely doing good on it. Some do very good. Best Wishes .lol gail

New Member

Date Joined Nov 2007
Total Posts : 6
   Posted 11/21/2007 5:37 PM (GMT -7)   
So what do you think of this? I was diagnosed by two different drs with three different biopsies, the most recent being 13 years ago, as having Crohn's disease. Last year I was hospitalized twice with blockages. Am still being prescribed Pentasa. But after a capsule endoscopy, my dr. now says I do not have CD. But I am experiencing terrible abdominal pain, 20x a day trips to the bathroom, losing weight bla bla bla. Very frustrating. He says it is better that I am not diagnosed with cd for life insurance purposes, or if he is not availabe and I get sick and and another dr won't stick me on steriods. I never heard of such a thing. Has anyone else? I don't know what to think.... confused

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 11/21/2007 6:13 PM (GMT -7)   
This was my experience with my IBD too, first Uc, then CD. Many here have tread that same path. Its all too familiar..


Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 11/24/2007 5:24 AM (GMT -7)   
Hi Rachael and Welcome. I have been on Remicade for over 2 years and I am doing fine. No-side effects from the med. I hope you do well with the Remicade.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Rachael W.
New Member

Date Joined Nov 2007
Total Posts : 4
   Posted 2/8/2008 7:30 PM (GMT -7)   
Thanks to everyone who replied, i know it's been a while, but life has a way of keeping you busy at inopportune times! I'm still not yet on remicade, my gi wanted to try a combination of entocort and a few other things first... it feels like it's about to stop working, if you know what I mean, so I'm predicting that I'll be starting soon. I'm tired of trying new meds, i just want something that works!! (haha, sorry for the slight rant...) anyway, thanks again for replying! it was tons of help!

Rachael W.
New Member

Date Joined Nov 2007
Total Posts : 4
   Posted 2/8/2008 7:31 PM (GMT -7)   
oh ya, and I officially have Crohn's now too.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 2/8/2008 7:44 PM (GMT -7)   
Hey Rachael :)

I have crohns-colitis as well (cd affecting the colon) and basically the same meds used to treat UC are also used to treat crohns-colitis...one other difference between having UC and CD is that with CD the patterns of inflammation are skipped with healthy tissue in between, with UC the entire area will be inflammed and as mentioned above, with crohns the inflammation can penetrate the many layers of the intestinal lining which can lead to fistulas which are not found with UC because of UC only affecting the mucosal lining of the intestines.

I suggest a good probiotic if you're not on one already...the one I use is called primadophilus reuteri made by natures way, it's affordable and only one/day is needed and most importantly, it has guaranteed intestinal release...it also aids with lactose intolerance, high cholesterol and vaginal health as well...must be kept cold at all times though...found in the refridgerator section of health food stores.

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 2/9/2008 9:50 AM (GMT -7)   
Well, after I got over the shock & depression ( Twice is too much!) I found out the CD colitis is pretty much like UC anyway (except in complications dept. <Sigh>).

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