UC to J-Pouch Story

Avoid Wrong Diagnosis

Posted by mark on July 26, 2008

 

 

Webcast starting on July 28th, Avoid Wrong IBS/IBD Diagnosis offered by the Excellent Resource of Health Talks

It happened to me, as it happens to many others – My diagnosis of UC at one time was questioned.  My story is similiar to one of we’ve all heard before;  After a blood test, I had markers of Crohn’s (the infamous and much debated/questioned Prometheus Blood Test). This sparked the worry of “Indeterminate Crohn’s/Colitis diagnosis.”  Which at the time was overwhelming to hear because I was just then considering surgery for the jpouch, and adding this “indeterminate diagnosis” meant I was more likely only able to have the permanent ileostomy. Which of course, is a great option, but at the time, learning what you thought was your disease and isn’t after all, was really hard to absorb.  Turns out after 4 consults later with different GI’s & 1 surgeon regarding the validity of the Prometheus Blood Test in my situation, we decided I fit more the profile of UC and today I am living healthy and happy with my jpouch.

Now, what is so important for many of you out there – is to learn how to understand your diagnosis, especially if it is a new diagnosis or a changed diagnosis.  I haven’t heard this webcast since it isn’t out until July 28, 2008, but I do recommend for you to listen. I have been ONLY PLEASED with the excellent quality of the Healt Talk Webcasts and am shouting to others iwth chronic disease to pay attention to their webcasts.  They are just medical enough to be legitmate, but not so technical I feel like an outsider!

*Please note: We are not saying that the Prometheus Test is good or bad, but for my situation we decided that the findings were of the test were not relevant. The link provided is of other patient opinions, please seek professional advice from medical experts regarding your Prometheus Blood Test. However, if you do happen to get the “indeterminate blood marker” diagnosis, do NOT panic….learn all your facts, seek multiple opinions, know there are other tests do clarify your situation. And note, many of us have had this test done and received scary results that didn’t materialize to be true in the long run.

Photo via:  Mary gaston22

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One Response to “Avoid Wrong Diagnosis”

  1. marsupial said

    This happened to me as well–2 months after I received my ileostomy, my surgeon sprung the news on me–he said my pathology report from the surgery “strongly favored Crohn’s,” and that getting the j-pouch a few months down the road may be tricky. I immediately burst into tears. After so many tests during the previous 2 years, never did anything ever indicate I had Crohn’s. My surgeon said to meet with my GI.

    She reviewed the pathology report with a number of people, took some blood…a month later she also gives me the Indeterminate Crohn’s/Colitis diagnosis, yet felt I was still a strong candidate for the j-pouch, and said she would make this argument to my surgeon. He trusted her opinion, and after he discussed withe me the complications that could arise if I indeed have Crohn’s with a j-pouch, he felt comfortable doing the surgery on me.

    He said everything looked great when they did the j-pouch–no signs of Crohn’s, yet even that pathology report came back favoring Crohn’s. So, who the hell knows? All I know is that, knock on wood, I’ve had next to no problems in the 9 months since getting my j-pouch. If Crohn’s does eventually rear its ugly head and I have to get a permanent ileostomy, I think now I’m in a better emotional state of mind to handle it, not to mention my body has returned to full strength.

    Thanks for the info about the webcast–I will definitely tune in.

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