Thank you all so much for your kind words and support on my last post. They mean so much to me!!
In this post, I’ll be continuing my (long) story of how I was diagnosed with Ulcerative Colitis. If you missed it, you can read part one here.
So we left off with me leaving the hospital…
During this time, I started seeing a Nutritional Therapist. I think I was annoyed with conventional medicine, I thought that getting my gallbladder removed would solve my problems, and none of them went away. My nutritional therapist was awesome. It was kind of expensive, as my insurance didn’t cover it, but I think it was worth it. She pegged inflammation in my colon right away. She also got rid of the headaches ad migraines I had been having for years.
In October 2012, my weight loss got bad. I used to weight about 135 pounds, but over time I got down to 110 pounds, and being 5’6” and with my body type, it was too low. I was eating a lot, but most of the time I just wasn’t hungry, and wouldn’t and couldn’t eat. Combined with my fevers, my mom thought it might be something serious, so I went to my doctor. (I should have gone much sooner, but I just never put things together and am crazy unobservant when it comes to my own body and tracking things over time.) My primary care doctor did some blood work, and the only thing that came back was a very high platelet level. Since he couldn’t find a cause, he sent me to an Oncologist/Hematologist. This doctor did some more blood work, and ordered a CT scan of my head, chest, and pelvis. It was the CT scan of my pelvis that showed I had an inflamed colon.
Because of this, I was sent back to my G.I. doctor. In November of 2012, he did a colonoscopy, and diagnosed me with Ulcerative Colitis.
Ulcerative Colitis is an inflammatory bowel disease, or chronic illness that affects the large intestine. The cause of ulcerative colitis is still unknown.
My G.I. doctor prescribed me Apriso, which is an anti inflammatory drug that is supposed to help with the inflammation, stomach/colon pain, as well as the diarrhea.
It didn’t work, and three weeks later I was having another bout of extreme stomach pain. It got so bad I could hardly walk. I called my G.I doctor, and he prescribed me two medications. When I got to the pharmacy to pick them up, I got some bad news. They were going to cost me $400 for only 10 days. The pharmacist said that without my insurance, it would have cost me $2,800. To make matters worse, my pharmacy had to order the medication, and it wouldn’t be in until the next day. Not to mention, that the nurse on the phone told me that the medication would take 24 to 48 hours to start working. I called my G.I. doctor back hoping he could prescribe me something else. He had already left for the day, so I was told he would call me back the next day.
I knew I couldn’t live with this pain for another two to three days, so my mom took me to the emergency room. I had a very high blood pressure and heart rate (which can be an indicator of pain) and they did some tests to check for inflammation. They gave me two doses of morphine, and one of dilaudid before the pain subsided. They also gave me a prescription for oral pain meds, which I took for a couple days before the pain went away.
The next day, my doctor called me back. He put me on 40mg of prednisone daily. Within just a couple days, my upset stomach went away, as well as the diarrhea.
Thankfully, I had an appointment already scheduled with my G.I. doctor the next week, and my mom (the nurse) went with me because she always asks the right questions. My doctor did a really good job at explaining everything. He was upset that the first medication he wanted to give me was so expensive, and he really didn’t want me to stay on the prednisone for long. It’s a horrible, horrible drug. It’s a steroid, and one of it’s most famous side effects is moon face, where your face and cheeks swell up. My face is a little puffy and a little rounder, but thankfully it’s not too bad. I have gained like, 15 pounds though, which is no fun.
He decided he wanted to put me on Imuran, which is an immunosupressant. but first I needed some blood tests and a TB test done first, to make sure that my body could handle the medication, and that I didn’t have TB. (I don’t!! hooray!) II had to go get my blood drawn twice, because the first time they screwed up and drew for the wrong test. But finally, after a month, I’ve started the imuran. I’m currently tapering off the prednisone (Which is HORRIBLE! My whole body aches and I’m tired all the time.)
And that’s where I am now! I’m happy that this feeling of not knowing what was wrong with me is over. I’m not thrilled about the diagnosis, as it’s something I’m going to have to live with and take medication for forever. But, I can’t change or fix anything, so I’m trying to stay positive. It could have been much, much worse, so I guess I’m thankful as well. I’ll never forget my second appointment with the Hematologist to discuss my lab results and the first think he said when he came in the door was “Well, it’s not cancer.” On the right medication, Ulcerative Colitis is treatable (although not curable) and you can live a normal life.
Thank you so much for listening to my (long) story! And sorry for the photoless post. And sorry it took so long for me to get this next half up. I’ve started a new job (on top of my old one) and with school back in full swing it’s been a busy time!!