Good afternoon everybody!
When I stopped writing a few months ago, I had just shared with you my fears and my feelings on having to start Remicade treatments. I cannot believe that was 9 months ago already!
Thanks to Remicade, I have stayed healthy and stable for this whole year, which is very different to the craziness I went through last year! Dr. Patel said most UC kids can only go as long as 4 weeks without a Remicade treatment before they start getting sick again, but luckily I have started only having to do them every 6 weeks!!!!!
Right after I got diagnosed last year, my mom signed me up for Chron’s and Colitis Foundation of America’s Camp Oasis here in Georgia. She said she had mixed feelings about letting me go though, because she was scared I would be around other kids with the same disease, she thought I would get scared when I saw how badly the disease can affect other people, and to see how sick some of the kids really were. Some of them are pretty much in bed all day for being in extreme pain, some were on Remicade infusions, some couldn’t really control their bowel movements, some did not have to be on preventive medicine at all. Others had a J-Pouch, and for those of you who don’t know what that is, it is what most UC people get if their disease gets bad enough and can’t be treated anymore, which is when your colon and rectum are removed in surgery, and a pouch is created and attached to your small intestine. You can still use the bathroom normally like a regular person, but pretty much have a “fake” colon and rectum. And then there are the people that need to have the colon, rectum, and anus all removed, and have a permanent ileostomy, which is the bag that gets attached to your body on the outside. Most kids there had Chron’s instead of UC though, and some of them had had surgery to remove part of their intestine, the part that gets so sick and damaged, it can’t be healed.
I had just been diagnosed less than two months before camp, so I understand now why my mom had mixed feelings about me going. On top of being around kids that might have been a lot more sick than I was, there was no way to communicate with my parents, friends, or anyone outside of camp for the week I was there. I had gained a lot of weight thanks to Prednisone, I had been having a lot of trouble staying free of C-Diff, and I had to take about 14-18 pills of medicine per day.
But, I went, and it was great! I met so many kids that actually understood what I felt and what I was going through, in a way that, no matter how much she tried, my mom could not understand. For that whole week, I did not feel like the freak I had been feeling like, I didn’t feel different anymore, I just felt like I could be me again. Being around kids that were more sick, or in a whole lot more pain, just made me thankful that I was ok. Getting to meet kids that had surgery, and had J-pouches, did not scare me, it inspired me, and it made me realize that no matter what they had gone through, they had gotten over it, and were still ok. They were also getting to do everything I got to do, which showed me that if I ever got sick enough to need surgery, that I was going to be ok too. I felt better not only when it came to surgery, but also when it came to possibly having to start on Remicade infusions. I was getting so tired of taking multiple pills a day, and still feeling sick, it got to a point where trying to take the pills were a challenge, because they started to have a terrible smell to me, so it would make me gag, and almost throw up when I took them. I cried and cried and cried, I was in tears every night when it was time to take them, it was the part of the day I had come to dread. So, at the end of the year, I decided I was going to tell Dr. Patel I wanted to start on Remicade infusions, because anything sounded better than having to take those pills.
I had a colonoscopy in January so Dr. Patel could make sure I was a good candidate for Remicade. He found out then that the pills I had been taken had not been working anyways, so Remicade was his next suggestion for me. I had mixed feelings about it, I thought I was ready for it and that was what I wanted, but now that the time had come for it to be official and coming true, I was scared and did not know what to expect. But, thank God, here I am almost 10 months later, healthier than I have been in a long time. Remicade was probably the best thing that has happened to me since I got diagnosed, because it brought back part of my life that I thought was gone after I got diagnosed. The only downside to my new treatment is the fact that I have to take weekly shots of Methotrexate at home, but that is a whole other subject, and it deserves its own post.
But for now, I will finish off by saying I am thankful for feelings better and for staying healthy ! See you guys next time!