Finally diagnosed!!!

[Peanuttt]

Hi all!!
It has been a long while since I have posted anything on the forum... I have been "unofficially" diagnosed with CD since March of 2012 (my symptoms came on all of a sudden back in September of 2011). I was in the same boat as all of you struggling to get a concrete diagnosis... w/ test after test, CT scan after CT scan, blood test after blood test - all showing high inflammation markers and "nonspecified inflammation" in my large intestine. My GI would not give a concrete diagnosis until he could find objective evidence - I.e. ulcers, bleeding, etc in the GI tract.

However, he placed me on Asacol not thinking it would work for me, in March of 201 and guess what? IT WORKED. Tremendously. I went for another SBFT in November of 2012 at the doctor's advisement bc I was experiencing, for the first time, pain in my RLQ. Most of my pain, if not ALL of it, had always been in my LLQ.

The SBFT showed a small ulcer at my terminal ileum... AND FINALLY A DIAGNOSIS!!! Who would have thought someone would be so excited to see an ulcer? LOL!!


I just wanted to show my fellow undiagnosed patients that while getting a diagnosis can be an extremely long, agonizing, and frustrating process, it is very important to self advocate. You know your bodies better than any doctor will so if something is wrong, TELL THEM. Even if you feel like a pain in the arse (haha pun intended!)... if you don't stand up for yourself and stay on top of them, no one else will.

And so, I am bidding farewell to the Undiagnosed Club. Sending lots of hugs, healing thoughts, and prayers to you all that you receive a diagnosis so that things can finally be treated properly! Hang in there you guys!!

I came from. I am sending lots of hugs and healing thoughts your way

 

[Cat-a-Tonic]

Hi Peanuttt! Congrats/condolences on the diagnosis and I'm glad you get to "graduate" from our little club (but do feel free to pop in anytime you like, I will never kick anyone out of the Undiagnosed Club as we're like a little family).

Are you just on the Asacol for now? Although I'm undiagnosed, I've been on Asacol for awhile now myself and it works pretty well. Anyway, I am glad you have some answers and I hope you are doing well.

 

[Peanuttt]

Hi Cat - the meds I take specifically for the CD are Asacol and Nucynta ER, which is a fairly new extended release pain medicine that is specifically for around the clock pain relief, and it is a TOTAL Godsend when it come to keeping the pains that come along with the diagnosis at bay. The Nucynta has been the one and only medicine besides the Asacol that really worked for me!

How have things been going with you? I hope you are on a solid path to diagnosis and that you are doing well also!

 

[Cat-a-Tonic]

Thanks! I'm nowhere closer to diagnosis but I am doing well - my GI decided awhile back that I probably have IBD and that he was going to try to get me into remission rather than put me through more tests, so as a result I'm in remission and doing well. But there's really no point now in going through more tests, so as long as I'm in remission I'll remain undiagnosed, and if/when I flare up again then I'll go through more tests. I can't complain though, remission is good and I feel really well most of the time.

I'm glad to hear the Asacol is working so well for you. It's keeping me in remission so I know it's good stuff! I haven't heard of that pain medication but I'm glad you've found something that works well for you. So glad you have a diagnosis and are getting some relief!

 

[dannysmom]

Thanks Peanutt. I am glad you finally have a confirmed dx. Were you on Asacol when you started getting the new pain .. an they found an ulcer? If yes ... have they made a change to control inflammation?

 

[Peanuttt]

Hi Dannysmom! Yes I was only on a small dose though... 400mg 3x daily. Once they found the ulcer, they upped me to the dose to induce remission and have kept me there... 800mg 3x daily. That's when I really started to get some relief!

 

[dannysmom]

Very happy to hear that!!!