Posted 7/9/2022 11:03 AM (GMT -8)
I have been a Crohn’s patient for 15 years. Tried out all possible meds. In 2016, I developed a perianal fistula and ever since I have been put on Remicade. For the first 3 years it was monthly until the fistula was claimed to have healed. Ever since, I take Remicade every 8 weeks. My Crohn’s is located in the end of my terminal ileum and beginning of colon (ileocolitis) + rectum. Remicade could put my ileocoloitis inflammation under control but that was not the case for the rectal inflammation.Throughout the years, I used to take colifoam for the rectal inflammation as mesalamine enemas/suppositories were not that effective. Then, colifoam was not available where I live. So, my GI told me that Remicade did not reach my rectum and he put me on cortiment (budesonide MMX).
Given that I have been on busesonide (entocort/cortiment) low dose for more than 10 years, my GI decided I have to taper it off.
Since last November, I started to have soiling and persistent rectal pain. I underwent an MRI dynamic but it didn’t show any inflammation. I have been put on Trud enema every other night but to no avail. So, Trud became daily but it was still ineffective. Again, changes were made until I ended with taking Trud enema in the morning and Pentasa enema 4 g at night. Still, I do suffer with retaining the enema especially the pentasa. My problem is when I wake up in the morning and have a bm. Soon, severe abdominal pain hits and if I don’t take another enema, I would suffer all day from this dull stabbing pain in my rectum throughout the day until the next pentasa enema is due. Trud enema is not that effective if not effective at all.
Had a colonoscopy last week and suffered from after test abdominal cramps that lasted for more than 3 days and was prescribed painkiller injections. Today, on the 5th day, I started to have the first bm which was very little and as you would expect I soon had the abdominal cramps and my rectum feels sore.
I discussed with my GI the possibility of changing Remicade before undergoing the colonoscopy and he said we would have to wait for the results of the scope + biopsy results + Infliximab trough and antibody test results to decide. Did anyone have a successful experience with any other biologic other than Remicade and were the rectal symptoms put under control?