I visisted my brand-new gastroenterologist yesterday.
A recap: I was originally diagnosed with Crohn’s disease in 1997, and had been in medication-free remission since 2003. I had a Crohn’s flare in 2009, and hadn’t found a new gastroenterologist in Floriday yet, so my HMO referred me to Doctor #1. Had a colonoscopy and started on the meds that I know put me in remission (immune-suppressors), although they started me at a lower level. After 3 months, Doc#1 opted to put me on a second medication, Cimzia (one of the new “biologic” drugs that specifically targets something called Tumor Necrosis Factor Alpha) as well. He said after 6 months, I’d stop with the immunosuppessants.
Two years later, Doc#1 never did stop one of the medications. I’m still on both. I had to go in for a visit every three months because he enrolled me in a 10-year clinical study for the Cimzia. Every visit, I complained of dry, grainy eyes (I can’t wear contacts anymore)and horrible cystic acne, among other issues (occasional fatigue and arthritis). All of those things started when I started the Cimzia. He’d always wave them off, or tell me to see a dermatologist and an ophthamologist for additional creams or drops or pills to deal with the side effects. When I said that I still had occasional joint pain (because I probably have permanent joint damage from all the steroids I took when initially diagnosed with Crohn’s). He’d also wave that off, saying things like, “Well, that shouldn’t be happening.” Sometimes he’d act like I was lying. Sometimes he’d even roll his eyes.
I knew he had a terrible bedside manner, but my last visit took the cake. Once again I complained about the side effects of the Cimzia, and also expressed concern about the long-term possible side effects: cancers, brain injury, even death. He looked me square in the eye and said, “If you can’t stop worrying about these things, I recommend you seek therapy.”
After making me cry (not for the first time), he left the room. And while I was standing at the counter making my next grueling follow-up appointment with the receptionist, I got to overhear him complaining about me to his staff. Because I’m in remission, and other people aren’t, and I just don’t appreciate the great doctoring he’s done to get me healthy.
Finally I’d had enough. I went to my HMO to get a new referral to a new gastroenterologist. First they gave me a referral to Doctor #2, but then I got a call from one of the ladies at Doctor #1’s office. Doctor #2, it turns out, is in a different branch of the same practice that Doc#1 is in. She warned me that Doc#1 would most likely discuss my case with Doc#2, since they’d just be handing my records over inside the same practice. So I called the referral folks and asked for someone completely separate.
Got an appointment set with Doctor #3. Then I went to get a copy of my records from Doc#1. The ladies in his office were very understanding, and didn’t charge me for the big stack of paper. (They’ve always been lovely.) It was an interesting read, to be sure — nowhere in two years’ worth of records is there a single mention of the side effects I’ve had. There’s also no mention of any joint pain, nor of when I reported that I had a stubborn inner ear infection (when on immune-suppressing drugs, you have to keep a close eye on any infections). There were no mentions of anything — according to these records, on every visit I was healthy and free of symptoms or side effects, with no problems at all. After reading through everything, I was horrified and angry, but so happy I was going to get another doctor’s opinion.
I just hoped he’d have a different opinion. I was very nervous to see Doc#3, because for all I knew, he’d agree with everything Doc#1 said, and he’d keep me on what all my research told me was too much unnecessary medication.
I went over my 14-year Crohn’s history with Doc#3. He asked if I’d ever had a small bowel x-ray, and I told him no, never. He seemed perplexed, and asked again to be sure. Nope, doc, never even heard of a small bowel x-ray. I’ve only ever had colonoscopies.
I told him about the two medications I’m on. He asked what others I’d tried before taking the Cimzia. I asked, what do you mean? He listed other biologics — Remicade and Humira — that apparently people are supposed to start with, because Cimzia is a medication that people move to after others stop working. I told him no, I started with Cimzia.
Then I told him about the side effects I’ve had ever since starting Cimzia, the horrible embarassing cysts on my face, the gravelly dry eyes, and when I told him that my old doctor advised me to see a shrink, I started to cry.
I apologized for crying. And Doc#3 quietly put his hand on my arm and said, “You have nothing to be sorry about.”
He told me that the eye problems are absolutely due to the Cimzia. And that he hadn’t heard about cystic acne, but it’s absolutely possible because of the Cimzia, or perhaps the combination of drugs. He told me that for Crohn’s disease, which affects the entire digestive tract (as opposed to ulcerative colitis, which is only in the large intestine), a small bowel x-ray is essential to see if there’s any damage in the small intestine. And he said that if my small intestine looks good, then there’s absolutely no reason I should ever be taking the Cimzia.
Then he asked if I’d been put in a clinical study for the Cimzia. Yes, I told him — some 10-year thing. He asked if it was the Secure study. Yeah, that’s the one.
“THAT,” he said, “is the reason you’re taking the Cimzia.”
And I burst out crying. Because all of the studies on Crohn’s I’ve read (and I’ve read a lot) made me think that because I respond beautifully to a less dangerous medication, I should never have been put on the Cimzia. That it’s the next step for people who aren’t helped by other medications. But Doc#1 insisted that he knew best, both meds were essential, and that I should remain on the combination of meds “until a cure comes along.”
I dried my face and left with orders for some blood tests and a small bowel x-ray, which I’m doing next week. It’s a 4-hour procedure where you drink barium and then wait for it to make its way down into your innards, then they take snappies of your barium-coated guts. If all that comes back looking good, I’ll be able to go from two dangerous medications down to one, and potentially down to zero at some point in the future. I might be able to wear contact lenses again. And hopefully the acne scars should fade … in a year or two. I also left feeling like I have a doctor who listens, and who cares about what I think and what I want.
In less my-innards news, Scott’s car died in a clanking, clattering, puff-of-smoke way the other day. He knew his clutch was getting squishy, and had just called around to see what it would cost to get a new clutch put in. He was planning on dropping his car off before his tonsillectomy, so they could take their time. But last Thursday, the clutch decided to give up the ghost.
He had something like a 3-hour wait for AAA to send a tow truck, and then had some crappy service from the rental car company. But on the plus side, we dropped the rental car off yesterday, and the guy who helped us was the branch manager. He asked how the rental process was, and we both smiled and made “ehhh” sounds. Told him about the rental guy who tried to charge us more than we’d reserved for, among other things, and the manager took forty bucks off the bill. Nice!
Scott has his car back, and he says the clutch feels great, but now it’s idling rough. They had to replace a couple of hoses and gaskets and such that were underneath the engine, so we figure something just didn’t get tightened down the right way. I think he’s going to take the car back tomorrow to see if they can get it smoothed out.
Friday, Scott’s going in for his tonsillectomy. I had my tonsils out when I was five, so I have no real memories of the pain or how long it took to recover. All I remember is that I got an injection in my butt, and that really hurt.
We’ve heard a wide variety of stories, but for the most part it sounds like recovery takes longer for adults, becaust they have more nerve endings and blood vessels connecting to the tonsils than kids do. So he’s going to be out on medical leave for 10 days, and we’ll play it by ear if he’s still feeling bad after that. Meanwhile, he has bottles of hydrocodone at the ready, and we’re going out tomorrow to get ice cream, popsicles, protein shakes, and any other cold, soothing thngs we can find.
I can’t wait to see what kind of writing he gets done. I’ve told him he should write a diary. Neither of us knows how loopy the hydrocodone will make him.