Hello, my name is Trent and I was just a normal 19 year old guy who loved to cycle and play tennis and be out with friends but that all changed when I was hit hard with Ulcerative Colitis.
My Story from Being in School to Having my Colon Removed:
It was the last day of school for the semester, just finished my last final of my first year of college but I wasn’t feeling good at all like I planned on. I went straight home and hit the bathroom where I had been many times in the previous days before. Not sure what was going on I went to the doctor who thought maybe I just had food poisoning and tried to treat me with that, but after a week nothing improved it only seemed to get worse. I went back to the doctor hoping for something that would keep out of the bathroom and the cramping to stop but he wasn’t sure what was wrong and recommended I go to the hospital because I was in such bad shape. I was at this point super dehydrated and losing weight fast and after only being sick 2 weeks. Went to the hospital and would end up spending a week trying to get better, but nothing was helping. They had me on antibiotics and steroids but I still spent much time in bed because of the pain o r the bathroom. Finally I got sent home with the hope that I would get better so they could do a scoping without causing any problems in a week. Well, the week came and went and I was only getting worse, I was down to about 95 pounds from my 130 I normally weigh so things weren’t great. I couldn’t walk or anything without the help of my mom or dad. Went back to the hospital where they took me in and had me set up for a colonoscopy the following morning. It was just another sleepless night for me as I waited for the morning to come and find out what was going on with me. They did the scope and that’s when I got the news that “I have a textbook case of UC” as the doctor put it. I have never heard of the disease and at that time didn’t care what I had, I just wanted to feel better and get back to cycling and playing tennis like I use to everyday. Little did I know I was in for a long rough ride dealing with Ulcerative Colitis. I ended up spending 18 days in the hospital as different doctors came by and offered all the advice and recommendations they had, we tired Asacol, azthioprine, predinsone but nothing made any difference for me. I finally settled with trying remicade, I was getting so depressed and was willing to do anything to feel somewhat normal again even the thought of surgery sounded good to me if it would help, but my parents thought the remicade would be the better choice, like me they were scared to death of everything going on but they did the best they could to stay strong and support me. Well, if there was any good news to all this the first remicade infusion really helped me a lot, in fact it got me out of the hospital because things had improved so much. I was so excited but it was short lived, after about a week things started to roll back downhill, but with the infusion just a week away I did my best to stay away from the hospital and hope the next infusion worked like the first one did. Well, it did help me a lot again this time but this time it lasted about 3 days of goodness, its like they didn’t give me enough of the drugs. So for the third one my GI bumped it up 2 weeks hoping to get me feeling good again but this time nothing changed, it was like they just pumped water into me. I was thinking at this point life was over and I would just feel bad forever. A few weeks went by and I found this website and read peoples stories and it helped me a lot, I found out about the SCD diet and tried that but no change in anything and then I came across CURTIS’s STORY and about his surgeries and started to research more about the procedures and the more I read about it the less scary it sounded to me and I was ready to be feeling good again and figured surgery was the only way for me to get that way. I got sick in May and it was now August my whole summer had came a went and I wanted to get ready for school again but with being so sick I knew I wouldn’t be able to live away from home very well after contacting a few members of ihaveuc.com about their surgeries and how their lives are now I figured I would take the chance and go ahead with the surgery.
And here I am today, I met with a surgeon at the Houston Rectal and Colon Center September 14, 2011, and we set up the surgery the following week on September 20, 2011. It will be two weeks tomorrow since I had my colon removed and the J-pouch created. It will be a two part surgery rather three because I was able to get myself in pretty good shape. They gave the ileostomy which hasn’t been as bad as I thought it would be now that I am getting pretty use to it.
As of today I feel great, almost hundred percent better than I was 2 weeks ago before my surgery when I was always in the bathroom or laying in bed with such bad cramping pain. I am recovery really well, and walking around outside away from my house, which I could never have done weeks ago for fear I wouldn’t have a bathroom to run to when I needed it. I go see my surgeon in clinic this Friday and hope he has some good news on my incision and the drain tubes will come out.
I know this was a long post but I kept putting off my story until now, not sure why but I figured if me reading everyone else stories and it helping me, that maybe my story or journey can help someone else out there who are going through those rough days and sleepless nights not knowing what is going to happen. It sucks being scared to leave the comfort of your bathroom and not being able to get out and be active because the lack of energy and all that accompanies UC flares. I am hoping once I get fully recovered I’ll be able to jump back on my bike and be able to ride a charity event for this disease with a huge sence of pride.
The one thing that I would really like to say is that as much as I have hated getting this disease that it has also been a blessing for me, it put into prospective on whats important in life and how everything that seems so normal can be taken away like that in no time. It has showed me a whole new look on living and enjoying everything you can about life. It has brought me closer to my family as they rallied around me and supported me and continue to do so as I recover from the surgery and helped me realized how much my friends cared for me as they did the best to understand when I just couldn’t hang out. And I wouldn’t want to give that away at all. I am really grateful for all that I have and the support that people have sent my way even if they don’t know me, just them putting me into their thoughts and prayers has really showed me that life is great and to take advantage of it every day that I can from here on out.
Prednisone, which I will begin to taper off of for good I hope.
Metronidazole (only a few days more of)
Levaquin (only a few days more of as well)