What the hell do I have?

I need help and you guys really seem like you can lend some advise. I started when I was young: 7-8 years old (with cramping and bleeding and fevers for no apparent reason). My doctors originally believed it was due to anxiety because I would have short periods of time where my blood pressure would be very high even though I naturally have very low pressure. However I always thought it was something else; something biological. As I got older and entered high school it only got worse. I was biopsied and diagnosed with Crohns's. I kept it under control for a year and then was put into the hospital because of extreme weight-loss, dehydration, and pain. I was admitted for 3 days and on my 3rd day got a colonoscopy in which nothing was found (of Crohn's or any IBD). I spoke to many people who were misdiagnosed with the disease and could identify one some levels with them but on other could not (such as the pain I was experiencing). It has been 8 months since this incident and 3 weeks ago I had my most recent: I could not deal with the pain and had my roommate drive me to the hospital after work. I was doubled-over and did not know what to do. I was vomiting after everything I ate (including drinking things as plain as water). I had a Cat Scan done and they found that I had an enlarged ileum however I did not have a high white-blood cell count. Regardless they put me back on Asocol ( which does not work for shit) and send me home with a re-diagnosis of Crohn's. Tomorrow I have to prep for my next colonoscopy and Upper CT. I don't know what I have and am well under-qualified to diagnose myself. I've researched so much at my collage and have decided to put my career into medicine mostly because my experience with it has been so indecisive. From what my symptoms sound like, what the hell do I have?

Hi rk620mike. Welcome to the forum. Thanks for the praise. if the dr's you've seen still haven't made a definite diagnosis, then all anyone here could do is guess, and it wouldn't do you any good, either in the short term or the long run. Getting a dx is pretty tuff for this disease, and if it's of any comfort, it's very common on here. so you aren't alone, many of us struggle to get our disease diagnosed correctly. I would suspect (just a guess) that the on again/off again issue is that the colonoscopy ruled out any current inflamation in the colon, but it probaby didn't/couldn't get past the terminal ileum into the ileum to see there. I have the same problem.. my colon is too bad for them to get past it into ileum.. So, you MAY not have crohn's colitis, but you may have crohn's disease within the iluem... That would/could explain a clear colonoscopy AND CT results, OK? I would ask if the hospital has the capacity to perform a pill cam endoscopy.. The blood work is something I can't explain.. so I wont' even hazard a guess on it. The other thing... and it's important to keep this in mind... is that the 'correct' diagnosis when it comes could be a lot of things... but even if it is crohns, that its not the end of the world. for all of us with it, life does go on, quite nicely..

Hi There,

Good to see you posting and really hope you get answers soon. I agree totally with Kev on the diagnosis front and it is purely a case of continuing to push until you get answers you feel are right for you whether its crohn's or not.

I went through the docs thinking it was coeliac disease or IBS and ended up with Crohns being diagnosed last Xmas.

It is possible to have Crohn's and a normal White Cell Count I will say that because I do!! And even when really sick I will only just squeek outside the normal range then too. My GI told me alot of Crohn's patients do that and may have pretty normal blood results but be ill still if that helps?

I saw my GI today and he told me some of my recent tests contradict each other yet clinically I am still having problems so he has made some changes to my treatment in relation to what we know works and doesnt work so far.

Hang in there you will get answers in the long run you just have to be a bit on the stubborn side about it all.

Feel free to touch base anytime and also let us know how you get on. Hope the next round of tests help resolve some probs too.

Thinking of you - know how tough it can be at times just coping and waiting!

Welcome rk620mike,

I am glad you felt comfortable asking us this question. I hope you have read the posts above, as they both have some good information in them.

The only thing I have not been able to confirm is if you have been to a specialist yet (like a gastroenterologist). While they are not perfect, I would assume they would be better at diagnosing you then a normal doctor who is overlooking your test results. Consider seeing a specialist who may be able to diagnose you with more confidence and prescrive a better treatment option.

Good luck and please let us know how this turns out.

I agree 100%. A good specialist will help you faster that any GP. Maybe you are already seeing one. If you are they should have some answers for you after your scopes.

It really is a very difficult diagnosis to make. The various bowel diseases are so similar in nature.

Good Luck.

Dan Bergman