Blog / Random thoughts and musings.

Crohn’s update

I finally had my 6-month follow up appointment with my gastroenterologist… about 4 months later than it was suposed to be. It takes about a month to get an appointment, and my last two attempts ended up being rescheduled. We discussed the results of the ASCA (anti saccharomyces cerevisiae antibody) blood test I had done a few months ago, which again strongly confirmed the Crohn’s disease diagnosis. Since I’m feeling so much better since the surgery (with over-the-counter assistance), we’re calling me “mostly in remission”.

After surgery and remission, Crohn’s patients are supposed to stay on 6MP immune suppressants to reduce the risk of a flare-up, but since 6MP is (rarely) associated with causing lymphomas and I’ve already been down that road, my GI doctor ended up saying “I don’t know what you should do!” Instead, I suggested Pentasa, a Crohn’s drug I had been on for 8 years or so, taking 16 pills a day. Kathie and I were pretty amazed when he replied: “we now think Pentasa doesn’t have any benefit in Crohn’s patients.” Wow… I just did some math and I’ve taken somewhere near 40,000 of those pills. I’ve never felt any tangible benefit from them, but was told by 3 GI doctors in a row (including this one) that it’s important to stay on them. It just goes to show how little they know about Crohn’s even after 100 years.

The next step is to have my oncologist forward copies of my last 3 PET/CT scans to my gastroenterologist. As long as I have to get the scans every 3 months for the Hodgkin’s follow-up, we might as well track my Crohn’s level with the same scans. The amount of intestinal inflammation remaining now after the surgery will determine what we do to try to prevent a Crohn’s flare-up. My 3-month oncologist appointment (about a month late) is this coming week.