I bid farewall to the Undiagnosed Club

[natatak227]

Hi all!
Just got back from my 4th colonoscopy, where my GI finally gave me an answer. After 5 years, he finally had enough evidence to diagnose me with Crohn's. Although I'm a bit scared to move forward, it is as if a huge unknown weigh has been lifted. I'm actually excited about the future and medications that can help put me out of pain and discomfort. So, I bid farewall to the undiagnosed club, but hope that each and every person here finally does get the proper diagnosis. It might be a long process, but NEVER, EVER give up hope that there will be an answer for you!
All the best,
Natalie

 

[Rebecca85]

That must be a relief, to finally get some answers! Shame it had to be Crohn's though!

 

[StarGirrrrl]

Thanks Natalie, and it makes me so proud and happy when someone gets to "graduate" from our club!

Obviously I am not happy it turned out to be CD, but I am that you finally know what's wrong and can get the proper treatment.

:ghug:

 

[Crohn's Mom]

Happy for you that you finally got a proper diagnosis and can finally move forward!

Best of luck to you on your new journey !

 

[natatak227]

Thank you all for your continued support!

 

[dannysmom]

Happy for you too (as odd as that sounds )!!

 

[Equestrian Girl]

I couldn't believe it when I read your message. It is Feb. 2012 and after being mis-diagnosed for close to 2 years, and after having my 4th Colonoscopy - I have been "officially" diagnosed with Crohns. For the 2 years prior.......I was being told I had IBS........and that it was basically "all in my head".

I was just recently started on Prednisone and Mesavant........and after 2 weeks of continual pain and agony - I have now been started on 50 mg. of Imuran once a day.

After only a couple of days......I am feeling somewhat nauseated. Did this happen to you?

As well........since I see you were diagnosed with Crohns in 2011 - do you have any advice or suggestions that you (or anyone else) would like to pass along to me ? Right now, I am trying to gather as much information as I can in reference in what meds worked for others........and what challenges and/or successes you may have had since you were diagnosed.

Many thanks,

Equestrian Girl, Ontario - Canada

 

[natatak227]

Equestrian Girl-
I was recently diagnosed with Crohn's this year, but I have actually been on multiple medications since last year. It seems as though our stories are very similar! They also thought I had IBS and I was, like you, feeling as if everyone thought it was "all in my head," until seeing inflammation and ulcers on multiple colonoscopies.
60m
It has been a long road so far with me, but at least I know what I'm dealing with now.

I've only been on the Imuran for a few days, so I'm not sure how that is going to work. I'm hoping for the best, but then again, I've also been told that Humera might be a better med.

Previously, I tried Pentasa (4000mg), Entocort (90mg), Prednisone (60mg titration since Sept. 2011...and boy am I still feeling the side effects from that!), Lotronex, Lomotil, and a number of other meds. I found the Pentasa and Entocort basically useless...they did not thing for my constant loose stools (about 12-15x/day).

So, I'm hopeful that the Imuran will start to work. I will keep you posted.

One suggestion that I give all the time is to get a second opinion; My GI is great, but just hit so many walls with my diagnosis. I got a second opinion from a GI who works at a research hospital. This really got the testing and process going to find an answer for me. It also solidified my diagnosis of Crohn's, even though many, many tests came back negative.

Its hard to keep going to so many doctors and going through so many tests, but that is how I got to my diagnosis!

 

[bozzylozzy]

at least now you know what's going on with your body. and hopefully these meds manage it well all the best for the future :heart:

 

[natatak227]

Thank you!

 

[PVail]

Natatak227, I know its not good new s but I am delighted for you for at least now you know you are going to get proper treatment . I hope it brings you a better quality of life and that everything for you improves. Good luck with your treatment.

Un DX for 3 years.IBD symptoms

Asacol 800mg 4 x day
Amitripyline
neurontine
and various other stuff that just didnt work.

 

[natatak227]

Thank you all! I'm in uncharted territory now, but it does bring me relief that I finally know what I'm battling.

 

[Equestrian Girl]

To: Natatak227 and anyone else with Crohns

Back on Feb. 10th.......I sent a reply to your note - since my story almost mirrors yours exactly. I was just wondering how you are doing. I am newly diagnosed with Crohns (i.e. Feb. 9, 2012)......and the following are some of the meds I am on (i.e. Imuran-50 mg., Prednisone(weaning down to 30 mg. per day) and Mezavant)......but since I only started Imuran on Feb. 9th - I really have not noticed any difference. I am hopeful the Imuran will start working soon. I am back to see my G.I. on March 9th - and I'll be asking him if I should be on a stronger dose of Imuran. Any comments and/or suggestions from those with Crohns - who are farther along this journey than I am..........would be greatly appreciated.

From Equestrian Girl - Ontario, Canada :canada_flag:

 

[natatak227]

Hi Equestrian Girl!
I was just diagnosed Feb. of this year, but hopefully I can offer some support. My GI increased my Imuran to 100mg/day. This has made a DRAMATIC difference in my health. It is very funny how just taking one more pill a day did the trick (along with Entocort for continued inflammation). I've been on the 100mg for about 2 weeks, and my pain has decreased, as well as my bowel movements.

How long have you been on the 50mg of Imuran? My GI was willing to increase very quickly, as I saw little relief from the 50mg.

Also, only a large dose of Prednisone worked for me in the past (60mg or more) so my GI looked at other options. We are thinking now that my immune system is starting to decrease, which is leading to my decrease in symptoms, as my body is no longer attacking my small intestine constantly.

 

[LindaS]

I am sorry you have CD, but glad you know what the problem is so you can get the appropriate treatment.

If I recall, Imuran can take a couple of months to work so sometimes you need to be patient and be on the predisone while it ramps up in your body.

 

[StarGirrrrl]

Hi there Have you thought about posting on the Imuran board to see if anyone there can offer better advice? We tend to be in the main undiagnosed folks here so not sure how much we can help

EDIT: sorry just seen you have posted in the Imuran board. I would suggest starting your own topic there, rather than have your post buried in another general thread. There is a new feature here on the forum that, if you don't get many replies, a "robot" will PM you asking if you need more support, and if you agree a request will go out for more help. :rosette2: So hopefully either way you can get the advice you need.

 

[Equestrian Girl]

Thanks for the info.

Many thanks Star Girrrrl for the advice. I will take your suggestion and try it out..........and see if it works. I have now been on Imuran for 3 weeks..........and still nothing great to report. I am trying to be patient.........but right now - I am just getting more and more frustrated.

I will start a new Thread - and see if that helps.

Talk to you soon,

Equestrian Girl, Ontario - Canada :canada_flag: