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Crohn's Disease
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Posted 6/9/2009 1:07 AM (GMT 0)
I went to meet my new GI for the third time today and he wants to do a new colone and endo, he now thinks I have UC and not CD :S I am so lost first I was DX with Microscopic Colitis then with UC and in December they finally decided that I had CD and now my new doc thinks that it has always been UC.
The scope that I had in December showed obvious sines of CD there where two docs present when the scope was done but now my new doc thinks that this was just some sore from all the D I have been having :S
I called my old GI today and he said that it was so obvious that it was a part of the disease.

I am so lost right now I feel like I am just some toy they are playing with, he also asked me why I was not working like I was some kind of a looser cry
Like my constant joinpains, D and fatigue, anxiety and stress are not enough.
He also want to check me in to the hospital while we do the prep for the tests because I am so fragile in his words..

I know I am not an easy patient (my old GI told me so hehe), I have some weird symptoms that are not a good match to just CD or just UC.
And I am sometimes like over alert about my body so I notice every single little thing. But I always try not to over interpret them.

But I just felt like I was some kind of a nut today at the doctor..
Posted 6/9/2009 1:31 AM (GMT 0)
Hey, isergodur---we here on the forums think its ok if you are difficult.  We're all difficult.  Our illnesses are DIFFICULT, and if they are hard to diagnose, that is frustrating for the doctors, but it is so not your fault.    It is hard for experienced, well-meaning gi doctors and pathologists to interpret the cells in the biopsy--it is not a straightforward thing at all.  And then when there are conflicting symptoms,or symptoms that keep changing, well, it is quite a mess.  The only thing to do is be patient, keep observing, and eventually it will be worked out.  There is alot of overlap between CD and IBS--sometimes a couple of years are required to know for sure which one it is. 

The best thing to do as a patient, IMHP, is to eat well, get enough sleep, get enough exercise and go easy on yourself.

You are not a nut (whatever that means, because mentally ill people suffer alot, too...)

Sometimes it helps to have a question list, and get a copy of your records to have "translated" by a knowledgeable friend (or us, if you want)

Keep posting!

Pix turn

Posted 6/9/2009 2:48 AM (GMT 0)
Don't let them make you feel bad, Isergodur. You are not responsible for the complexity of your symptoms: it's *their* job to sort things out and diagnose you, and they shouldn't be foisting their disagreements on you, or making you feel like some kind of nut just because you're a difficult case.

Remember, you're not tricky, you're special and unique, ok?

*hug*

Ivy.
Posted 6/9/2009 12:18 PM (GMT 0)
I'm sorry you are being treated this way. But 2 things, a lot of the medications for UC are the same as CD, so their treatment plan may help, especially if most of your activity is in the large bowel anyway. And, none of us want to go to the hospital for anything, but maybe being in the hospital for the prep isn't so bad in your case. You did say that you thought you were getting too dry, and the prep will only make things worse. By keeping you hydrated, maybe you won't suffer too many ill effects from the prep and be in a better position to heal than you would be otherwise. Also, keep in mind that many UC patients have their diagnosis changed to CD, so it stands to reason that the doctors are not always clear on what they are looking at. Maybe when this doctor does his tests he will see something he doesn't expect to see and change your diagnosis back. But either way, the treatments and drugs are mostly the same, so if the diagnosis is off, you should still see some improvement.

(((hugs)))
Posted 6/9/2009 1:41 PM (GMT 0)
Hi there. I was originally diagnosed with UC, and 10 years later had that diagnosis changed to CD (crohn's colitis to be exact). My current doctor emphasized what the previous posts say - the treatment is mostly the same. My current diagnosis was confirmed by biopsies. My GI said that it can take years for CD to show up microscopically. Either way, please don't let your doctor frustrate you, and if you don't like the way you are treated, maybe seek a new doctor. Also, for now, try not to get too discouraged by the doubt of whether it is CD or UC, since you will likely receive the same treatment anyway. I hope you find a treatment that helps!
Posted 6/10/2009 12:06 AM (GMT 0)
Isergodur, does Iceland have some sort of arrangement where difficult patients can be seen and / or treated by doctors in one of the larger countries near you -- Denmark, perhaps? I know Iceland has a fantastic economy and an extremely high standard of living, but I'm wondering just how many severe IBD patients your doctors see, given that your population is only approx 300,000. I can't help but wonder if you might get better treatment if you had access to a doctor at a more specialised IBD centre... just like patients in larger countries who travel hundreds of kilometres to see the high-ranking specialists at the major national hospitals.

Just an idea...

Ivy.
Posted 6/10/2009 5:10 AM (GMT 0)
I noticed the fatigue, joint pains and thought that I would pass on a suggestion. I know that all that can be a result of the gut immune reaction - I used to tell people that Crohn's is like having food poisoning all the time - but maybe it is something else. Rather than rewrite a previous post, please see my response on the following page: HealingWell
Note the warning about fish oil vitamins.
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