My GI doc and his nurse are mad at me.
I was in a complete remission without UC meds for 6.5 years. The only meds were lomotil (IBS issues), Tramadol (long-term pain syndrome began when on Remicade), Tylenol (for pain syndrome).
that mix AND eating gluten-free worked. Along came the covid vaccine and it went south. I was trying to stop Tramadol at near the same point (a month or so after first vaccine dose).
Anyways -- psychiatrist I'm seeing that deals with stopping pain medicines says there are studies that show SSRI's (which Tramadol is in many ways similar to) affects GI bacteria. I called into my GI office to ask if they would consider me starting an SSRI to trial it. (In the past I tried Cymbalta for the chronic pains from Remicade and it made my gut function much better.) I didn't promise them this would work, but thought it worth a shot. My gut definitely has some sort of function tied to my emotions/moods. Coupled with the gluten-free diet I felt it worth a significant shot.
The nurse very rudely told me I need to just take the biologic (Entyvio) and stop calling them until I see the doctor at my next appointment. The doctor is super hard to get in to see, and they don't have any email/mychart type connection to assist when there are concerns/issues in the months between visits (in this case I tapered Uceris and started to bleed again.)
I'm afraid to take a biologic again. I spent YEARS during/after Remicade in so much pain that it was a struggle to simply lean over to my nightstand to take my pain meds hours before waking (to have them kick in enough to get up later). Let alone the stigma that is associated with taking pain medicine in the medical community. The other option is surgery, but having been in a very long-term remission (proven by multiple clear scopes) without UC meds I'm baffled why I'm not being taken seriously at all. It feels like this is either a money thing (get more from me doing Entyvio), or that they don't want my experience of being med-free to actually prove anything. There is zero listening to the patient, but unfortunately in our city this clinic of doctors is THE place to go. Their reviews tell a very similar story, and my wife's recent endoscopy experience mirrored this terrible bedside manner.
I'm going on the hunt for a new GP tomorrow that maybe can assist with a few trial-and-errors if need be before we risk the biologic. I had a great GP but she moved away and the one I've seen for the past few years is more for the common cold and broken bone type issue unfortunately. Going to look for a functional medicine type doctor; have one lead right now.
Post Edited (Thoreau) : 7/7/2021 10:12:42 PM (GMT-6)