(no subject)
I went to Cedars-Sinai yesterday because they have an IBD Center. In all honesty, I was a little apprehensive because the guy was Asian, but his accent was VERY slight and he knew his shit. As Katy put it, he was trying to teach a class about Crohn's. Though my file from my gastroenterologist's office was faxed minutes before my appointment, he still reviewed my information and made it in the office in a timely matter. We went over my entire history of symptoms and procedures and medications (it was so fucking hard to remember the names and milligrams I took... fuck) and he spent the time to get every detail of everything I said. A lot of doctors just ignore you or tune you out, but he didn't. Then he drew me a diagram of the anus, colon, intestines, stomach, esophogus, and mouth and said that I have ulcers in every place on the tract, which I already knew. But then he went through every medication and explained where exactly it was designed to work and why it wouldn't work for me. Most medications will only work in the colon, or the stomach, or part of the small intestine and the colon, but few work all throughout, and the only one I was on that worked all throughout was Prednisone, but I failed that. Then he whipped out my blood test results and showed me how out-of-range low I was in over half the things tested, like calcium and hemoglobin and stuff. My doctor said those tests were normal except for slight anemia. He also showed me that they tested for the amount of inflammation, and normal people score under 20. Mine is 51, which is extraordinarily high. I don't know how it is measured, but I'm peeved that my doctor didn't bother to tell me that because it is pretty important. The Asian doctor (Dr. Shih) said that my GI deals with a broader spectrum of issues, but Dr. Shih does research on Crohn's and Ulcerative Colitis 75% and treats patients with it 25% of the time, and he said he "lives it, sleeps it, dreams it" whereas Dr. Block is just a gastrointerologist, dealing with more than just the two diseases. So sometimes they forget things or are a bit more scattered, and sometimes doctors know what medications generally work at the level a patient is at, but don't always take into thorough consideration where the drug works.
Dr. Shih was also peeved because to go on Humira, I have to be tested to be sure I don't have tuberculosis. I was, and I passed. But Dr. Block didn't give me the control shot. It's like this: Crohn's makes your immune system wacked up as fuck, so it's on overdrive and is likely to cause a false negative on a test for a disease, like TB. A control shot is helpful because it will always come up positive, and if it comes up negative that means that the TB shot is positive, even if it comes up negative. So I have to do that again with controls. Also, Dr. Shih explained that the blood test that is kind of the gold stamp of approval for "Yes you have Crohn's" was created at Cedars-Sinai, and it's faulty. Dr. Block said that people who pass the blood test can still have Crohn's, and about 15% of people tested will come up negative even if they have it. Dr. Shih explained that if the blood test indicates 4/4 things (as he was showing me the results with the chart on it) are present, it means you have Crohn's. If it has any less, the test is negative. I had 3 of 4, and Dr. Shih said he is trying to improve the test's accuracy by lowering the requirements to 2/4.
So the only medications left to try that could possibly help me are Humira, Remicade, Cimzia, and this other one that starts with a T. Humira is injections (inject yourself) in the stomach or thigh once every two weeks. Remicade is a two-hour IV transfusion every two months. Cimzia is an IV transfusion every month. Dr. Block was pushing Humira, but Dr. Shih said he prefers Remicade more because it came out in the early 90s, so we know more about it and its long-term effects. He also said that sometimes Humira can be cheaper than Remicade (at full price, it's about $2,000 a shot) because sometimes insurance companies will have a contract with Humira. My mom looked it up and my insurance covers Humira AND Remicade, so I think I'm going to push for Remicade because it's less of a hassle. Also, I am so low in iron that I have to get 5 IV iron transfusions in the next month, spread out in 1-2 times a week. I guess my chances for becoming an addict to something by injection is out of the question, cause my veins are fucking shot.
Speaking of which - after the appointment, a nurse came to get several vials of blood. She put the tourniquet on, gave me the squishy thing to squeeze, cleaned the crook of my elbow off, and then stuck the needle in. She let go to get the container to hook it to the tube, and when she let go, I watched as the needle tilted and slid out of my vein. There was a beat of silence when the three of us (Katy was there) just paused and stared wide-eyed at my arm, cause blood was rushing down out of this tiny hole because I was squeezing and there was the tourniquet and all this blood trapped in my arm. I got blood on the pillow and the squeezy thing. The nurse was mortified, and I felt bad for her. She was like, "I've been doing this for eight years and that has never happened!" And I was laughing, but she wasn't. She was super embarrassed.
Alas, now I look like a potential addict, with a big bruise around a hole in my vein.
Dr. Shih was also peeved because to go on Humira, I have to be tested to be sure I don't have tuberculosis. I was, and I passed. But Dr. Block didn't give me the control shot. It's like this: Crohn's makes your immune system wacked up as fuck, so it's on overdrive and is likely to cause a false negative on a test for a disease, like TB. A control shot is helpful because it will always come up positive, and if it comes up negative that means that the TB shot is positive, even if it comes up negative. So I have to do that again with controls. Also, Dr. Shih explained that the blood test that is kind of the gold stamp of approval for "Yes you have Crohn's" was created at Cedars-Sinai, and it's faulty. Dr. Block said that people who pass the blood test can still have Crohn's, and about 15% of people tested will come up negative even if they have it. Dr. Shih explained that if the blood test indicates 4/4 things (as he was showing me the results with the chart on it) are present, it means you have Crohn's. If it has any less, the test is negative. I had 3 of 4, and Dr. Shih said he is trying to improve the test's accuracy by lowering the requirements to 2/4.
So the only medications left to try that could possibly help me are Humira, Remicade, Cimzia, and this other one that starts with a T. Humira is injections (inject yourself) in the stomach or thigh once every two weeks. Remicade is a two-hour IV transfusion every two months. Cimzia is an IV transfusion every month. Dr. Block was pushing Humira, but Dr. Shih said he prefers Remicade more because it came out in the early 90s, so we know more about it and its long-term effects. He also said that sometimes Humira can be cheaper than Remicade (at full price, it's about $2,000 a shot) because sometimes insurance companies will have a contract with Humira. My mom looked it up and my insurance covers Humira AND Remicade, so I think I'm going to push for Remicade because it's less of a hassle. Also, I am so low in iron that I have to get 5 IV iron transfusions in the next month, spread out in 1-2 times a week. I guess my chances for becoming an addict to something by injection is out of the question, cause my veins are fucking shot.
Speaking of which - after the appointment, a nurse came to get several vials of blood. She put the tourniquet on, gave me the squishy thing to squeeze, cleaned the crook of my elbow off, and then stuck the needle in. She let go to get the container to hook it to the tube, and when she let go, I watched as the needle tilted and slid out of my vein. There was a beat of silence when the three of us (Katy was there) just paused and stared wide-eyed at my arm, cause blood was rushing down out of this tiny hole because I was squeezing and there was the tourniquet and all this blood trapped in my arm. I got blood on the pillow and the squeezy thing. The nurse was mortified, and I felt bad for her. She was like, "I've been doing this for eight years and that has never happened!" And I was laughing, but she wasn't. She was super embarrassed.
Alas, now I look like a potential addict, with a big bruise around a hole in my vein.