Switching Drs & Biologics

Apologizing in advance for a lost post, but this is complicated. Around 2010 I started having diverticulitis problems. Around 2014 I went to a GI dr, who I'll call Dr C. He treated me until 2015, when I decided to have a partial colectomy and remove 8 inches of my colon. All was good for the next year and a half, until I suddenly developed UC, so back to Dr. C I went. It took them until my 2nd or 3rd visit to figure out that my insurance had changed and they didn't take it. At the same time, I ended up in the hospital, and he said he didn't care about the insurance, he would go ahead and treat me until I was better and write off the expense. So after the hospital, I was started on Apriso and steroids and did get better.

In the meantime, the medical multi-specialty clinic I go to other drs. finally got a GI doc, and I was so excited because it was Dr. O, who I'd seen twice while he was being trained as a Fellow by my old Dr. C. So I started going to Dr. O and I really like him a lot. But the UC didn't want to stay quiet and I was on steroids most of the rest of the year and into the beginning of this year. Dr. O thought I was on a course to lose my colon so he started me on Entyvio and I think I'm pretty close to remission after 4 infusions.

Now Dr. O is moving out of state, so he referred me to his friend who's a GI in another city fairly close. Well, I get up there and my old Dr. C is also now in the same practice as this new, referred GI. When I mentioned I'd been treated by Dr. C, they immediately decided it'd be better for me to see a dr. who knew my history better, so they switched me over to Dr. C. I guess I should say here that I do really like Dr. C especially after he did so much for me when I was really sick and hospitalized. But when he saw me, he's not happy that I'm on Entyvio "already". Says he can't figure out how I progressed to just being diagnosed, getting better, and then on biologics in a year. I admit, if I had my druthers, I'd druther not be on biologics, and when we were first starting with the infusions, I'd just joined the forum and learned more about butt meds (which hadn't been offered to me). I wondered if maybe we would have been able to control the UC with other methods (I'm a non-metabolizer for the 6mp type drugs, so can't take those). But Dr. O scared me about losing the colon, so we went forward. And Entyvio does seem to be working.

But now Dr. C is all up in arms about it. I think partly he's not trusting a doctor who was his student, if you know what I mean, although he never said that. Now he says we have to have a colonoscopy and solve this "puzzle" of why my UC couldn't get under control without a biologic and then decide if I should stay on Entyvio or not.

Obviously, I am upset. I mean, yes, I'd rather not be on a biologic. Yes, I wish we'd tried nightly butt meds, but Dr. O thought my colon had been through enough already with the diverticulitis issues (and yes, I still have many diverticuli throughout what's left of my colon), the surgery and anastomosis, and then a year of flaring and inflammation. But going off Entyvio scares me. What would happen if I need to go back on it again? Would it not work a second time? I don't think he'll force me to go off it, but truly I don't know what to do. I would like to be off it, but I'm scared I'll just flare again and I really don't want to go back to that hell. But maybe it would be fine? ::wishing for a crystal ball:: Maybe it won't come to all that, I guess we'll see after the colonoscopy, but my health anxiety is sky high right now and it's stressing me out.

Advice or thoughts?

Oh, forgot to mention that Dr. C asked me, what kind of colitis did you have? I said pancolitis, and he looked at me ... and I realized that in the hospital, he'd only done a sigmoid because I was too sick to do a full prep.

So now I don't know WHO said I had pancolitis. I think the admitting ER doctor, but that was only from a CT scan. So maybe I didn't have pancolitis after all? Sheesh, who knows!

And so Dr C does a colonoscopy in a few weeks. What if he doesn't see much inflammation? Is that because it was never there, or because Entyvio has been healing me? WHY does this disease have to be so danged complicated?

I'd stsy on the Entyvio--it's working. Dr. C is not a good GI if he thinks it's ok that you were on steroids for *OVER* a year, but flipping out about Entyvio. That is old-school backwards thinking. You are lucky you had Dr. O instead of Dr. C or you probably would have lost your colon from his failure to act because of his *bias* that a "newly diagnosed" patient should have to try--and fail--all the "lower tier" meds before trying biologics. I would not see Dr. C anymore, because he may be "nice" but he is not as competent as the more progressive IBD specialists. Long term prednisone use is *proven* to be far more risky than long-term biologic use--read the studies in medical journals. Entyvio is fairly new, my only qualm would be that Dr. O didn't try Remicade first but I'm sure he had his reasons.

Thanks for the replies!

The reason Dr. O decided on Entyvio was because it's supposed to be less systemic than Remicade. Remi was our second choice if Entyvio turned out to be too expensive, but it's actually cheaper for me because it's covered under the medical portion of medicare + my supplemental, so I have no copay. (as long as it's done in the hospital -- which, technically, it's not. But it's at the hospitals outpatient chronic care office, and insurance is accepting it as the hospital, which is good for me!)

I feel beholden to Dr. C because he really was caring when I was so ill. He'd always see me right away (except at that time he only had office hours one day a week) or at least his PA would and she would check with him and then call me back, plus he treated me for free for about a month, including my 9 days in the hospital with him or his fellows visiting every day, and another time I ended up with a horrible itching rash and he called a dermatologist and get me in immediately to see him. Plus he went to bat for me with insurance when they were dragging their feet over a CT scan approval. So... I'm torn. Plus if I did decide to go with another dr., I'll have to find one.

I guess I'll go ahead with colonoscopy because I'm curious how much healing is going on and to see if there's permanent damage or not. Then I'll see what he says about entyvio after. Truthfully, I wouldn't mind going off it-- if I could be assured I wouldn't flare again. Don't wanna go back to that awfulness.

I also feel badly because I don't think my case as been nearly as bad as some of you guys. Yes, I flared a lot, but still my symptoms were a little milder ... i never really bled all that much, so I sometimes feel that maybe I over-reacted by running to the dr. at each little trace. I guess that's the only thing, though. The tenesmus and constant cramping were no joke and no over-reaction.

Helps a lot to gripe here. The whole dr visit and scenario keeps re-playing over and over in my mind and I'm driving myself crazy. Thanks for listening and being supportive!

Thank you poppie! Well see how it goes. Decided I'm going to gather up all my reports and take them with me on my next visit.