Diagnosed need some advice

[jakey]

diagnosed need some advice

In 2006 I had a perianul fissure which was operated on twice. I was told this was isolated and would not come back.

In 2010 I was diagnosed with Crohn's after being admitted to hospital in 2009 with terrible runs, mouth ulcers, fever, aching limbs etc They put me on hydrocortisone IV and after 5 days went home on prednisolone and mezavent. after 6 weeks I was only on mezavent and had recovered. After a while I stopped taking mezavent as i was convinced it was not doing anything. At this point the Dr's were not sure if I had Crohn's or collitis either way I had IBD and the treatment was the same anyway.

After a colonscopy which could not get to the ileum but proved not colitis I had a pill cam which did not see the ileum either. My Dr was convinced it was Crohn's of the terminal ileum.

As I was feeling fine I got it in to my head that there was nothing wrong with me. Then I had another flare up with bad mouth ulcers, pain, runs and MRI showed new fistula.

A new Dr now says that I have Chron's at the top and bottom of me not the intestines and that the original fissure was a fistula as well and that I must take imuran 75mg for 1st month then 175mg thereafter. And an operation to l"lay open" the new fistula.

does any one have any advice regarding imuran like side effects and also does this sound like proper Chron's? has anyone else heard of top and bottom digestive tract Crohn's?

thanks for any advice as i am a bit confused and worried about future:sign0085:

 

[David]

Hi Jakey and welcome

I don't know if there is a "proper" Crohn's per se. It seems like everyone's case is a little bit different but it sure sounds like you have the general symptoms. I'm sorry you've had to go through all this.

As for Imuran, check out our Imuran support forum as it'll answer all your questions and then some

I wish you all the best and hope to see you around.

 

[jakey]

Thanks David. I will look at the imuran threads.

Yes, I have been told by my GP, specialist and wife that I am in denial about the Crohn's. It is kind of a godsend not to have it in my intestines at the moment as this means I should not need any of it removing just now.

 

[David]

You're welcome

Out of curiosity, did they do a mast cell stain on your biopsies?

And yes, we all go through denial from time to time. I have plenty still

 

[jakey]

Hi David. I am not sure what the test was but they took a load of biopsies from various parts of my bowel/intestines and even ileum and I was told that there was Crohn's in the terminal ileum. When I mentioned to my GP that I thought there was nothing wrong with me (how nice remission is!) she said that my diagnosis was clinical not symptomatic (a nice line I thought). So i guess it was conclusive. But now I have had an MRI with barium meal and IV dyes and at first look the ileum appears OK. Funny cos when I went I went for the MRI I felt great, better than I had for months and then 2 days later terrible again. My main issue at the moment is that I have fluid/puss/blood that leaks and bad mouth ulcers. A short treatment with prednisolone has helped with the ulcers but I guess the leakage is due to the fistula.

sorry for going on an dtalking about leakage :ybatty:

 

[David]

If that fluid is leaking from your anus, that's why I asked about mast cells. It's something new they can test for. Give this a read: http://www.gipath.com/files/Mastocytic Enterocolitis PCR_pdf.pdf

 

[jakey]

Thanks David. That looks very interesting I will mention it to my GI. Thanks for taking the time to read my post