First let me start off by saying I am so lucky to have this GI. She is smart, thinks outside the box, and has very good bedside manner. She had seen me when I was admitted into the ER and performed my colonoscopy. Unfortunately throughout the 10 days I was at the hospital, she had planned vacation and was not able to see me through the duration.
In any case, she scheduled a longer meeting with me this afternoon to go over the plan. I told her about the mouth sores, the seemingly painful bowel movements and the cramping. She was not impressed with the progress so decided that the Salofalk was probably not going to be a long term solution for me. Recall I had already tried another mesalomine so we had done our due diligence in this category of drugs. Her suggestion was to start me on a biologic – Entyvio – which is administered as an infusion rather than oral pills. I will now have to have this administered at a special clinic. Dang!
The next big thing that happened during the appointment was that we went over the MRcP results which I was led to believe came back negative. Turns out there may be slight indication of possible primary sclerosing cholangitis (PSC). The stats tell me that a very very high percentage of those with PSC will come to develop IBD, whereas only 4% of those with IBD will develop PSC. This I can handle, but in people with PSC it turns out there is also an increased chance in developing colon cancer. And THEREFORE I will be enduring colonoscopies much more frequently than the average bear. Holy Crap! This is when I grabbed for a tissue and took a deep breath. I can handle information like this but I dont take lightly to the C word.
To come full circle, until the folks at Entyvio call me I am to up my dosage of Salofalk to 8 pills (4g) taken all at once, once a day (rather than the 1g/2 pills taken three times a day). The rest is to remain the same and I am to continue on the prednisone weening. Also, nothing to do about the mouth sores and hopefully the Entyvio will fix this too.