UC or crohns make up your mind!

[lookame]

Alright...so I've a little fed up right now. I've been told back and forth I have crohns, I have UC, I have crohns, I have UC. Heres the thing...my colonoscopy shows lotsof ulcers so based on the scope alone I can see why they say it's UC, but while in the hospital they gave e a blood test(a different doctor) and took biopsies and those came back as crohns. I showed my current GI the letter stating the blood tests and biopsies came back crohns and while at my appts he refers to my disease as crohns...but when he prescribes anything (like he gave me a box for some blood vials so he could test for my white cell count and platlets) he writes I have UC. It's very confusing I wish I had a clear diagnosis. *sigh*

 

[margie]

Melissa,
I hear you on that one, because the GI doc that diagnosed me with Crohn's years ago, I think is now doubting his own diagnosis and kept jumping between Crohns, UC and IBD. Which is it?

 

[Kev]

Hey lookame

What you probably are dealing with is an atypical form of crohns. Welcome to the club. I went through the same deal. Finally got a 'non-disputable' diagnosis of crohns this past November while they were trying to determine if I had colon cancer. (that latter one is still up in the air). Thing of it was that my crohns disease spread throughout my colon like it was UC... outward appearance was typical of UC, not typical of crohns. It really doesn't matter whether one has UC, CC or CD (well, except maybe in the case of a suspected case of UC leading a doctor to recommend surgery as a cure... if it is CC and not UC, then surgery may result in the CC becoming CD... isn't the alphabet fun?)
Don't get me wrong, I'm not vehemently opposed to surgery, I've had my share, but... it is a permanent decision. Once they cut something out, it can't be replaced, and it does keep me awake some nights wondering if I'd waited till I found LDN if those sugeries were needed at all.

 

[lookame]

Yeah mine is typical f UC how it spread and such but it spread rapidly. I thought the blood test would proove that I indeed had CD but for some reason my doctor keeps going back and forth. Though I did have a different doctor administer the colonoscopy and he sent away from the "special blood test" so I don;t think my doctor now has the paperwork saying it's crohns. It's just frustraiting

 

[chez]

Hi,I have had the same thing for the last 18 years,diagnosed with crohns in 1993,when I needed surgery they said it was uc and they would remove the whole colon which means no more disease,now I have just been told its crohns ,active in my small intestine,my pouch and rectal cuff,its very frustrating,!wishing u well