living with uc...

After lying awake since 2:3oam I decided to get up and make some use of the time... I'm awake because my doctor has upped my dosage of prednisone. A steroid with many side effects, one being insomnia. My doctor increased the medication because shortly after Christmas I came down with the stomach flu and it flared my uc. It has been an interesting journey with this disease so far and I'm curious to to see where it will take me over the next several months. I haven't really talked about it much because since October I have been in remission. The remission came thanks to the high dosage of prednisone I was on. Prednisone is not a drug you can take long term. As I said, it has many side effects which are harmful to the body. I recently had a bone density scan and learned that my bones are breaking down quickly. I am borderline osteoporosis. Throughout this time, my doctor has been weaning me off the prednisone and trying to introduce other drugs which are used long term. Unfortunately, my body doesn't tolerate these drugs well. In early December I started a new drug called 6-mp, an autoimmune drug that works by suppressing the immune system. I was not eager to start taking it as I learned more about the risks, such as cancer and liver damage, but at this point the risks taking the drug out weigh the risks not taking it. 6-mp can take up to three months before patients respond to it. In the meantime, I decided to do more research for alternative treatment options. I know there are a lot of probiotics and natural remedies out there, it's just a matter of trial and error. I emailed a specialist I saw back in September to discuss these other possibilities. He told me to make an appointment to see him. My mom and I drove down to Yale to see the specialist and get some answers. The doctor explained that if the 6-mp did not start to work then he would have me try my last drug option which is Remicade. The thought of going on Remicade scares me because of what it does to your body. If my body does not respond to Remicade then he said I would have to have surgery to remove my colon. Having my colon removed would cure me of the disease. That sounded pretty drastic. We discussed various probiotics (good bacteria placed into the gut) which he said I could try, but are costly and could not guarantee would work or be covered by insurance. After hearing my options, I decided that I am ready to try anything before having my colon removed. I am going to start taking VSL#3 and fish oil pills in addition to the 6-mp and pray it works.
As of right now, I feel great. Although, that is because I am still on the steroid. I was thinking today, that it is like I'm riding on a spare tire. The longer I am taking the steroids, the weaker my bones become, so the need to find a replacement is critical.
I thought I would share this with you so you could be praying for my health. Sometimes I feel fine and forget it is really an issue until I flare up or experience drug side effects. I'm so thankful for all the people already praying. My mom has been my biggest advocate and prayer defender with this illness. She has helped me pursue different treatments and supported me through a lot of emotional difficulties. It's because of all the prayer that I do feel such peace. I believe God has an amazing plan for me. I just need to be patient enough to find out what that is.