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Crohn’s or UC? My Doctor Isn’t 100% Sure

Introduction:

It’s been about seven weeks since I have been diagnosed. At the time my doctor said it’s probably UC, but didn’t rule out Crohn’s 100%.

My Colitis Experience:

My health has been getting better, especially for the past two weeks. I have been taking Lialda at the highest dose, and I started tapering off the prednisone and actually took my last pill yesterday (yay). I am also using probiotics, digestive enzymes, herbs, and vitamins. I started taking valerian root so I could sleep, while the pred was still giving me insomnia. Worked out pretty well, I finally got some rest after not being able to sleep for more than 4 hours straight for months. I can go to sleep and stay asleep now, without any help. I have carefully been trying out different foods that work for me and I have finally started gaining weight too. Bowel movementss have been down to 1 a day for a week now.

There have been weird things too, of course. The night sweats, the random super high fevers. Then 2.5 weeks ago my GP’s nurse calls and asks me how I’ve been feeling because my hemoglobin was low. So I tell her, and realize I’m probably anemic. She said she’d let my GP an GI know. That’s all. They didn’t deal with it any more than this, didn’t tell me whether or not I was indeed anemic. Anyway, I got a really extensive blood work done 14 days ago and saw my GI today.

He told me that he checked for some markers in my blood that would tell him whether I had UC or Crohn’s, but unfortunately all the numbers came back within range. So that means it wasn’t leaning toward Crohn’s OR UC. Huh? He said something like it could still be either or, or it could be a blend, or that some patients develop one and then the other. He did not seem too concerned though, since I was getting better. So I wasn’t concerned either. We focused on the progress. It just sounded like it would become clearer in the future.

But now after thinking about it for a while I wonder… Does anyone have any idea on this? Has anyone had trouble with being diagnosed for either or? Or is my GI just being extra cautious? The main reason he wasn’t sure initially I guess, was that there was no colitis present in my rectal area, but it should have been there to make it a clear diagnosis (according to him). But it could have been inflamed before the colonoscopy though, right? Or even after? Maybe it just wasn’t inflamed yet?? The “markers” didn’t lean toward colitis – is that maybe just because I am already getting better? Does all this make sense to anyone? Should I look for a new doctor? Please let me know your thoughts on this.

I asked him whether I was in remission now, but he said no, too early to say. My blood work STILL showed that I was slightly anemic (“might want to take some iron”) and still showed an elevated white blood cell count. Too bad, I thought I was well enough to be labelled “in remission”. Oh well. I feel pretty damn good anyway. Feels like I got my life back over all! Just finished another semester at school, despite the weeks I have missed because of UC (had a really great Professor who let me stay home and rest) I submitted all my work, only one day late!

written by Rebeka

Submitted in the Colitis Venting Area




crohns

5 Responses to Crohn’s or UC? My Doctor Isn’t 100% Sure

  1. UC mama December 13, 2011 at 10:10 am #

    Hi Rebeka,
    I definitely have UC, but after many years of having it, and the chronic inflammation, there’s been extensive scarring and narrowing, which is more common with Crohns. Crohns affects the deeper layers of the bowel. Crohns also can affect you anywhere in the digestive tract, whereas UC is found from the rectum thru-out the colon. There are special blood tests and pathology they can do from tissue obtained during a colonoscopy, sigmoidoscopy and/endoscopy which would help determine whether it fits Crohns or UC.
    However, since I’m not a “clinician” I can only offer you my opinion and experience :)

  2. Alison December 21, 2011 at 8:57 am #

    Hey Rebeka,
    I’m glad to hear that you are feeling much better but not so glad to hear that your diagnosis is confusing. I wish I could help you with those questions but like you I’m a newbie with this stuff. I don’t see a gastro until January and while my symptoms have improved since I last wrote, I’m still going more often than I should and still in pain sometimes so I’m hoping he has some answers. I’m glad your semester is over as is mine and thank goodness for those understanding profs! I hope you find out some answers soon and continue to feel as good as you are.

    Alison

    • Rebeka
      Rebeka December 22, 2011 at 8:50 pm #

      Thanks! I’m glad to hear you are feeling better too! I hope your pain will go away soon as well. It sucks waiting so long for the next appointment. I’m only going back in March… We’ll see if there will be any news then. For now, I don’t worry about my diagnosis. I’m just glad I’m feeling well again. I love the appreciation I have gained for feeling good and the little things in life.
      Happy Holidays

  3. Robyn January 4, 2012 at 1:55 pm #

    Hi there,
    I’m under the impression that there is a blurry area between Crohn’s and UC. My husband was originally diagnosed with UC at age 3. He had surgery at age 24 to remove his large intestine and create a j-pouch. Immediately after surgery he felt good, but within 6 months began having problems again. They initially diagnosed him with “pouchitis”, which seemed to match because it responded to antibiotics (unlike UC and Crohn’s), but a few months later the antibiotics weren’t working well either. We went to Mayo Clinic for a second opinion, and they diagnosed him with Crohn’s in the last 10 inches of his small intestine. They said it isn’t clear if he had Crohn’s from the beginning or if it is a reemergence of the same auto-immune pathology (he developed it later). They also clarified that if there is any autoimmune activity in the small bowl it is classified as Crohn’s…even if the large bowl is affected.

    I think it is worth pushing back a bit on your doctor and asking them to look into it. My husband’s Crohn’s now seems to be largely under control with Entocort and Cipro (an antibiotic–perhaps for the pouchitis).

    He has had a string of related health problems, a liver disease called primary sclerosing cholangitis which lead to gallbladder cancer. He is recovering from a liver transplant 6 months ago and doing wonderful. No doubt he has been dealt a rough hand (as everyone with UC has been), but he largely focuses on the positive. Right now he seems to be cancer free, no UC (well, technically no large bowl), have had a successful liver transplant, and Crohn’s is undercontrol with his current medicine.

    Best of luck and happy new year.

    Robyn

    • Rebeka
      Rebeka January 5, 2012 at 11:14 am #

      Robyn, thank you so much for replying to my post! Have a great year 2012! You and your husband have been through a lot, I’m sure you are both amazingly strong people. Glad to hear the liver transplant is working. You’re right, it is probably worth having the doctors look closer. I will see him in two months, and I’m very curious.

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