The day after I was admitted to the hospital, I went for a colonoscopy and it showed that the inflammation that had stayed put at the end of my colon for almost five years had spread to the rest of my colon. I remember hearing the gastroenterologist say "no wonder you're sick." I didn't have proctitis anymore. Now I had ulcerative pancolitis which basically means that there is ulcerative colitis in the entire colon.
I was on fluids and an IV form of prednisone. Once they took me off of that, I was on some pills. I was getting better but it was very slow. At one point, my hemoglobin went low (it dropped to 71) and I had to get a blood transfusion. Through the slow progress in the improvement of my health and the fact that I had to get a blood transfusion, the gastroenterologist said that my body was not responding well enough to the usual medications and I had my first dose of Remicade two days after my blood transfusion. Remicade is a biologic drug which is taken through an IV and it is basically the strongest drug for ulcerative colitis. I now have to receive it every two months, basically for the rest of my life since it is the kind of medication that you have to continue to receive in order for it to continue working. If Remicade failed, then I would have to get my colon removed.
Staying in the hospital was a scary experience for me. I had never stayed overnight in a hospital before and it didn't help that needles freak me out and I had to get IVs put in several times along with blood tests every day. I also got really depressed, which was possibly due to side effects from the medication, so my mood and my thoughts were really messed up. Also, I had to deal with the fact that my chronic illness had now become way worse than it used to be. I cried a lot and my parents took turns staying with me overnight for most of the nights because I would sometimes wake up all freaked out or I would wake up in the morning feeling really scared and alone. It was awful.
It wasn't easy once I got home either. There was so much information along with appointments and paying close attention to my body while it was still healing. I got really overwhelmed. So, I did something that always helps me when I'm overwhelmed by too many things. I organized! I put all of the information into a binder and split everything up into categories using dividers. Some of the things that I have in my colitis binder include a page for important phone numbers, calendars for keeping track of appointments and medication schedules, medication information, diet information, etc. Having everything organized nicely in one place rather than just having pile of pages helped so much! My brain didn't feel so scattered anymore. Another thing that I did was make sure to keep on top of phone calls that had to be made and appointments that I had to go to. I made sure to get things done right away instead of putting them off until later.
Fast forward to now, over two months later, and my colitis is much better than it was before but my body still has some more healing to do. I have had a total of three Remicade infusions so far with my fourth one coming up next week. My colitis started improving a lot the day after my first Remicade infusion in the hospital but the other Remicade infusions seem to only make it improve a little bit more rather than a lot more. I guess I'm still lucky though to have it work as fast as it did because it can take several infusions for some people before they start to see any improvements at all. So, maybe the Remicade still hasn't kicked in entirely for me yet. It is definitely working though, because I'm not getting sick again like I did before.
Having said all of that, it was easy to choose my word for this new year. My word for 2017 is HEALTH. Even though my health has greatly improved, there is still more healing to do. Also, I need to pay more attention to my body now since my colitis spread to the rest of my colon. I need to focus on my mental health as well since living with a chronic illness, especially when it is considered severe since I am on the strongest medication for it, can be difficult and can really affect how you feel. I hope that by the end of this year my colitis will be completely under control thanks to the Remicade and that I can say that I chose the perfect word.