First of all, I'm no longer at Children's Hospital of Philadelphia (CHOP) and I no longer have my doctor there of 3 years, Dr. Kelsen, who suffers from Crohn's disease herself. I've never liked any of my doctors, of any kind, they're all a bunch of lying assholes who don't know what they're doing or what they're talking about, but Kelsen was one who I could tolerate and who I semi-trusted. But I'm 18 now and neither the hospital nor Kelsen wants to deal with me anymore. So, to be closer to my college we went with a doctor who works out of Lehigh Valley Medical Muhlenberg. His name is Dr. Taus, and right away I didn't like him. But, as I said, I just don't like doctors in general, so that's mostly why. However, today I've come to like him even less.
I had a few things in mind to talk to him about before going in to see him. They were: When should my next colonoscopy be? And, to talk about these weird symptoms I had the night of my last Remicade infusion. (For those who don't know, Remicade is an anti-inflammatory and immuno-suppressant drug that I take to control my Crohn's disease that has to be infused into my bloodstream via an IV at a hospital for at least 3 and a half hours every 8 weeks). Though it wasn't pre-planned, when we got there, my parents and I, we also started to talk about the negative treatment I've been receiving at the hospital by the nursing staff, he really didn't have a lot to comment on that though.
So, he walks in and starts asking the normal small-talk "how are things going? how's school?" to get the conversation going. We first talked about my lessening tolerance for certain foods, which my mom sprung on me out of nowhere, and I wasn't very concerned about that. Then I told him about the weird asthma like, heart skipping beats and horrible pains in both my calves the night of my last infusion and whether it could have been a reaction to the premed steroids or the Remicade. He said he'd never heard of either of those symptoms as side effects of either drug, but I told him I've specifically read about muscle pains and similar respiratory symptoms on Remicade's official website. He said all we can do is wait and see what happens next time. I was kind of expecting that and I was fine with that answer. It was the last issue that bugged me.
After the symptom conversation was over we asked when my next colonoscopy should be. He said he doesn't prescribe procedures like that unless the patient is experiencing unusual symptoms. I DON'T LIKE THAT ANSWER AT ALL. I told him why I was concerned about that, which is, back in 2009 I wasn't experiencing any symptoms, no unusual bowel movements, no pain, no blood, absolutely nothing and my inflammation markers from blood tests had come back fine. However, I'd been on 6MP, my previous pill form drug, for about a year and Kelsen decided she wanted a colonoscopy just to see what things were like. That was the fateful colonoscopy where I woke up to the sound of my mother's tears and was told that ulcers were forming in my colon. I told him all of that, but he wouldn't budge. What's worse is that I tried to express my worries more and my mom tried to make excuses for me and saying that I'm a high anxiety person. I don't deny the truth of that fact, but I don't think that it was appropriate to try and defend the doctor in this situation.
I've always maintained that my disease can attack me in silence, and that has been proven by the colonoscopy of 2009. I don't think that being concerned about not having a colonoscopy unless I'm having symptoms is an irrational fear that needs excuses to be made for it. I mean, compare it to cancer. It's always best to find the cancer cells at an early stage because it means it can be more easily treated, can be more easily defeated, more quickly defeated, and will lead to a higher chance of survival. What if I hadn't had that colonoscopy in 2009 when I did? What if we waited until I was having symptoms? When my doctor caught them, the ulcers were extremely small and easily healed and vanished by a few doses of my new Remicade drug. If I was having symptoms wouldn't that mean it would have been much harder to treat? I think so. The ulcers would have been more frequented throughout my colon, they would have been bigger, and I would be in a much worse state. And this is the policy that he implements. Well excuse me for being just a little more than a tad bit concerned.
He also said that since I haven't tolerated my past 3 drugs there's not a lot to do if there was a problem except increasing the dosage. I 99.9% sure that's a load of bullshit. I've been on a lot of Crohn's disease related websites and I've seen many different medications for the disease. I don't know the potency of all these drugs, and that's why I can't know for sure if he's right or wrong, but I know we could try to switch to Humira which is a similar drug, but self injected. On the Humira website under Crohn's disease it even says: "It is also used to treat adults who no longer respond to or can not tolerate infliximab" which is Remicade. And I know that a lot of people are on multiple medications to control their disease, though I wouldn't want to be on more than one drug, if it's an option and would help I would do it. As I said, doctors don't know what the hell they're talking about.
So, we have to do my next Remicade at this hospital but after that we've discussed a few options. I don't much like Taus and I REALLY don't like the nursing staff at the hospital. We can look at another hospital near my college, St. Luke's, but it's not a major hospital and is probably much of the same, but Taus works out of there too. We can go to the specialized hospital of The University of Pennsylvania in Philadelphia that CHOP is affiliated with, get a new doctor, and miss a day of college classes every other month, which should be easily workable. Or, we could go to a specialized hospital called Summit in North Jersey and maybe miss a class or not, it's only an hour away, and get a new doctor. We have a lot to think about and all this stuff like this bugs the hell out of me.
In conclusion, doctors suck and Crohn's sucks.
