I was diagnosed with Ulcerative Colitis on January 14th and was there for 11 days. In that time they put me on Prednisone and Remicade then I went home. Got a second round of Remicade 2 weeks later. I had to come back to the hospital on Feb 15 because the second round of Remicade wasn’t working and the SCD diet wasn’t working either and I wasn’t seeing any improvement. When I went back into the hospital, they gave me a stronger dose of Remicade and I was back on the Prednisone for a week to see if that helped. No improvement after the week and so the only thing left to do was to have surgery to take out my colon. As they were taking my colon out, it was literally falling apart in the surgeons hands, so they got me in there just in time (after they pushed me back 2 days from when i was supposed to have the surgery).
So here is my update:
So….It has been 1 month since my surgery and I am feeling great. Still not fully recovered, waiting for my incisions to heal all the way and I’m still kind of walking around with a hunch-back but overall things are going well. I can drive now which is great because now I have some freedom finally. I stopped taking the Percocet (pain pill) like a week and a half after my surgery and yesterday was the last day of my Prednisone taper!! The only things that I am taking now are multi vitamins and an Iron pill. Woo Hoo!! I have pretty much gotten used to my Ileostomy, I mean as much as someone can get used to seeing their small intestine coming out of their stomach with a bag attached to it, so that is going fine. I am able to eat whatever I want which is seriously amazing after going through about 2 and a half months of eating pretty much nothing but IV liquids and nutrition through my PICC line in the hospital. I have eaten In’N Out, Breakfast Burritos, Chicken Burritos, Chicken Wings, Pepperoni Pizza, Ribs, Sushi, Meatballs, Pasta, Sandwiches…just to name a few. Everything goes down just fine and eventually comes out and goes into my bag, most of the time without me even knowing. Sometimes I feel a little pressure and then I know stuff is about to come out, and it’s kind of cool to watch it because it comes out like those Play-Do kits that we used to have when we were little. Anyways, that’s kind of gross, but things are going well to say the least now that my infected colon is out of my body. The good thing about my situation is that it happened after I finished my last semester in college so it didn’t get in the way of any of my school. I will be graduating in May from Cal State San Marcos. My journey is far from over though because I still need to have 2 more surgeries. The next surgery will be after my graduation in late May and then my final surgery will be in late August most likely. After t he last surgery it will be a couple of months until I am more back to normal, which will be great because hopefully I will be able to start playing soccer and surfing as soon as possible. Playing soccer is what I miss the most. I have been playing since I was 4 and I am 22 now. My goal was to play professional soccer, as many of my friends from my club soccer days are now playing professionally in the MLS, but that has been put on hold because of this situation I find myself in. I don’t want to call it an unfortunate situation, because getting this disease and going through the things I have been through in such a short amount of time have really made me look at the world differently. This whole situation has opened my eyes to see what things are really important in life and what things aren’t. I’ve found out that complaining about the disease gets you nowhere and you have to find ways to stay positive, because if you can’t find ways to do that, then you’ll just get mo re and more depressed. The thing that is hardest for me right now is that I am really bored because I can’t do much except sit at home and go on walks. I have been the poster child for healthy and athletic my entire life so being detoured with this has been a struggle. I can’t go and play soccer or work out yet because I haven’t fully healed, so that has been the hardest thing for me, boredom. Now that I can drive though has helped a little bit because I can go places with my friends if they aren’t able to pick me up. For a while though, it hurt to even ride in a car because all of the bumps in the road would be painful. So I have a car, but I have no real destinations because I can’t do much when I get anywhere, haha. Maybe I should take up mini golf or something, that’s pretty easy. Or I can go to the bowling alley and use the little ramp thingy to put my ball on and roll it down since I can’t throw the ball myself. Oh well, I’ll think of something.
That is my update for now, I hope everyone is doing well and finding something that works for them!