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My Ulcerative Colitis Experience

aaronmichaeld:

I was diagnosed on May 5, 2011 with ulcerative colitis. Ulcerative colitis is an inflammatory bowel disease which affects the large intestine and the colon causing ulcers and open sores, usually resulting in having blood whenever you go “number two”. There is no cause for this disease and the only known cure is to get surgery. At that time, my disease only affected about 24cm of my colon. I did experience symptoms as early as Christmas of 2010. I had gone to see my pediatrician, because I was 17 at the time, to find out what was wrong with me. She told me that it was probably a hemorrhoid and I should try eating a lot of fiber. Of course, that just made matters worse and I went back to tell her that I was still having problems after about 2 months of eating lots of fiber. I was then scheduled to have a colonoscopy, where I was diagnosed. As soon as I was diagnosed, the doctor had given me a steroid in enema form, to take to make the symptoms I was experiencing disappear. I was put on a bland diet, which to my parents understood it as: eating only white rice, water, and bananas until my symptoms went away. That was the most tasteless month I had ever been through, I would have given anything to even take a bite out of the simplest peanut butter and jelly sandwich. By the week before my high school graduation, I had lost about 10 pounds, previously at 145 pounds and now at 135, because of the lack of choice in my food products. Both the bland diet and medicine were working for me; I was not experiencing any type of symptom. My doctor had then proceeded to put me on a new medicine called Asacol. I had taken that for a week, up to the day of my high school graduation before I realized that it was actually making symptoms worse. During Sober Grad Night, I was running back and forth to the bathroom. Anything that I had eaten that day was causing my symptoms to act up once again, and the Asacol was reinforcing it. It turned out that I was actually allergic to the medication. I ended up leaving Sober Grad Night early, if I had stayed any longer, I would have eventually been rushed to the hospital. Thankfully, that did not happen. I was taken off of asacol and then put on prednisone. We all have our experiences with this drug. It did take away my symptoms of ulcerative colitis, but it also gave me the many side effects that is associated with it. I had night sweats, fast heartbeat, enlarged appetite, weight gain, and horrible acne breakouts. I experienced mood swings left and right and was turned into a whole other person because of this one pill that I took. Not realizing it, I was eating about four meals a day and probably twice the size that a “normal” person would eat, too. I eventually went to the scale within the second month of ingesting this new medicine and noticed the weight gain. I began trying to starve myself and exercise more because I did not want to see myself get bigger. At that point, I was actually at a normal weight for a person of my height and age, but, of course, that did not register inside my brain causing me to swim every morning for an hour and rollerblade all across town in the evening for another hour every day of the week. By doing this, I was actually hurting my body. The medication I was given was weakening my immune system. I had put off the over excessive exercise routine, but continued to eat less. I was on this for about 4 months and stopped the medicine towards the beginning of August and began to feel like a normal person once again. I was able to eat anything I wanted, which was great because I had really missed eating “real food”. I was put on imuran during the tapering. Several days after I was off the prednisone, my ulcerative colitis symptoms slowly began to come back. I was supposed to be on remission after the prednisone treatment, obviously this did not happen for me. My doctor suggested that now I either take a medicine called remicade which is to be injected into my bloodstream, or I get a surgery where the surgeons remove my colon and the affected part of my large intestine because the remedies that he had me try have not worked. As I stated before, surgery is the only known cure for this disease. I would not have to take anymore medication, I can eat whatever I want with limitations. Imuran did absolutely nothing for me, so my next step was Remicade. This drug only worked for the first infusion, but only for about three days did I have relief from my symptoms. I did have three more infusions, hoping that it would work again. After the third infusion, I felt a lump underneath my chin. I thought I had developed lymphoma and was really afraid that I was dying. I saw my doctor that same day and assured me that it wasn’t that. It was just a symptom of having the common cold. He was right, I had nothing to worry about. April 2012, I wanted a colonoscopy to see how much my disease had progressed over the past year. My whole colon was affected and my GI suggested to get surgery. I agreed with him and I was scheduled to have my colon and rectum removed on May 14, 2012. Unlike most people, I had my colon and rectum removed and had my j pouch contructed and attached to my anus all in one step. It was a successful surgery and it only took about 2 hours. I was stuck in the hospital for 12 days. I started to throw up and I lost my appetite on day 6. I lost about 30 pounds and was at 113. I was put on TPN, but shortly was taken off because my surgeon really wanted me to naturally eat. I am now colon free with a j pouch. I take psyllium husk fiber powder and lomotil three times a day before every meal. Having a disease like this one can be hard for any person. I am sick on the inside, but I do not look like it on the outside. It is hard for anyone to comprehend what I am going through unless I tell them exactly what is happening; sometimes it is hard for me, too, because it is too personal for me to explain. This experience with Ulcerative Colitis has really forced me to grow up on the inside because I have learned how to really take care of myself. I may not be “normal” anymore, but I am still my own person and I believe that is enough for me right now to get through life. The various medications that did more harm than good to my body and weren’t actually helping my control my disease to put me in remission. I felt like that my life was basically over and was destined to be chained to my bed the rest of my life while making monthly visits to the hospital. I decided to get surgery to get my colon removed. It was a rough surgery, but I’m glad I did it. I have zero regrets! Before, I wasn’t able to eat food, go out without worrying where the nearest bathroom was, have a decent social life, and I was in pain the majority of the time while only passing blood when using the bathroom. It was such a horrible experience, but now, since my colon is gone, all of the pain and suffering is a thing in the past. If anyone reading this knows or are a person with crohn’s disease or ulcerative colitis, I am a person who has experienced it and is willing to talk about it. It’s not the end! :)