I had my appointment with Dr. Shen's PA today. Unfortunately, I did not see Dr. Shen, despite being told to change my appointment today so I could see him. I was told to stay on the Canasa and they did a manometry test and scheduled a pouch with scope with Dr. Shen. His first available apt was not until November unfortunately. I was told that after they get the manometry results and do a scope we will know better on how to proceed. It's kind of weird that I have been treated for cuffits for 3 months and they have not done a scope to even confirm what it was. Dr. Shen's PA said that the manometry and scope will be able to show if: a) I have symptoms but no cuff inflammation, which apparently can happen, b) I have symptoms and cuff inflammation, or c) I have pain in my ilium from issues with straining/not emptying properly (which the manometry will show). Apparently my future course of treatment will vary depending on which category I'm in.
The one thing that was frustrating was Dr. Shen's PA was pretty adamant on not trying anything else besides the Canasa, such as prednisone, antibiotics, biologics, oral pentasa, etc or any other type of treatment. All she said was that if my bleeding gets worse we'll have to add the Anucort suppositories back like I did for a few weeks in the past. At least I have some tests scheduled that will hopefully give more answers because I left feeling like we're just continuing on the same treatment for now.
One thing that was also kind of weird was that she mentioned that if the Canasa ends up not working, my next treatment may be hyperbaric treatments like somebody mentioned in a past post Dr. Shen is using for pouchitis. I don't mind trying new treatments and am happy that he looks into them, but it seems like they are forgoing even trying other potential options by taking the stance of Canasa only, and if that doesn't work then hyperbaric treatments.