Ulcerative Colitis and How it Has Changed My Life

It was December 2008 and I started having stomach cramps, diarrhea and bloody stools. I did not think anything of it but decided to go see my doctor.

My doctor said that I should go see a gastroenterologist and have a colonoscopy. When I heard the word “colonoscopy” I immediately told myself I did not want to go through the prep that was involved with having a colonoscopy and I did not want to go through with the actual colonoscopy which I thought would be painful. I decided to wait it out hoping that the symptoms would soon go away. A few months past and it was now March 2009 and I was a couple of months away from graduating from university. The symptoms were getting worse. I was using the bathroom between 5-10 times per day with bloody stools, the stomach pain got worse and sometimes hurt so much that if I was standing I would have to sit down otherwise I would feel like I would pass out and I was losing weight faster than usual. At the time I thought it was maybe certain foods that I was eating that was causing this so I would eat certain foods and stay away from certain foods but the symptoms kept on getting worse. I finally decided that I had enough of this and went to go see a gastroenterologist. After speaking to him he initially thought it was Irritable Bowel Syndrome but he did want to perform a colonoscopy to see what was going on inside of me. Again came the word “colonoscopy” and I immediately told myself I did not want to go through with this, I was too scared of having a colonoscopy. However, the doctor insisted I have one done as soon as possible and pushed me right then and there to schedule one. Luckily I took his advice and scheduled one for about 3 weeks later.

It was now the beginning of April 2009 and I started the prep for my colonoscopy. It was horrible and I never wanted to go through it again. I went through with the colonoscopy and remember waking up and seeing and hearing the doctor speaking to my parents and telling them I had moderate Ulcerative colitis and that it had affected my entire colon. Once I woke up and got home I looked over the pamphlet that the doctor had given us about Ulcerative colitis and did not think much of it. I then saw the container of medication that we had picked up from the pharmacy and could not believe what I saw. I had never seen a container with so much medication before. I was told that I had to take 15 pills a day including a steroid. This is when everything started to sink in. I had never seen anyone having to take so many pills per day and could not believe that was the only way to treat this illness. As the weeks progressed I did research on the web and read and watched other peoples stor ies and I realized that I had a chronic disease that there was no cure for. I read that people with UC are hospitalized at least once in their lifetime and that after 8 years of being diagnosed that the chances of colon cancer increase. I went through days of feeling like I was alone and wondering why this had to happen to me. I was afraid of going out because I was afraid that I would have to suddenly use the bathroom, I was afraid of going to class because I did not know if I would have to get up and leave in the middle of it and have everyone stare at me. I was afraid of what was to come and whether I would get better or not, whether I would be able to survive this.

A few months past and it was around July 2009 when I could finally say I was in remission. The symptoms had gone away but I was still taking 12 pills a day. I was still upset that I had to take so many pills and wondered why there was no other way to keep this disease in remission. My life had changed; every day I would have to make sure I remember to take 4 pills 3 times a day if I wanted to stay in remission. Soon I figured out that certain foods would irritate my colon and my body. The biggest foods that affected me were dairy products. I could no longer have cereal every morning like I used too, I could no longer drink a glass of milk, I could no longer drink a milkshake or have a bowl of ice-cream. This has had the biggest impact so far because I loved milk and now all I can do is watch as other people enjoy ice cream and milkshakes in the summer wishing that my disease would just disappear and I would once again be able to enjoy the things that I loved.

I decided that I wanted to do something so a cure would be found for my disease. I volunteered at the local Crohn’s & Colitis Foundation of America Chapter and immediately started raising money and awareness for digestive diseases. I participated in my first Take Steps walk in the summer of 2010 and raised over $4,500. I was not afraid to tell people that I had this disease and even posted it as my facebook status so people would know what I was going through and would donate for my walk. I sent letters to my doctor, dentist and local businesses and knew that if they did not donate that they would at least know what Ulcerative colitis was. Many people who I spoke to said they knew someone with this disease and that they would love to donate. That got me thinking, if so many people knew someone that had this disease how come this disease was in the closet?, how come I had no idea what it was until I was diagnosed?. Maybe if I was aware of this disease when my symptoms starte d I would have gotten the colonoscopy done earlier to avoid having my whole colon affected and being at a moderate stage for the disease. My goal is to change this so everyone knows what Ulcerative colitis is and are aware of the symptoms so they can be treated as early as possible.

I have now been in remission for about 2 years but still worry everyday whether my symptoms will return or whether I will be hospitalized. I am still taking medication to stay in remission but am only taking 4 pills per day which is much better than taking 12 pills per day. I feel that I have accepted my disease but still have some days when I wonder why I have to go through this but am thankful that this disease has been good to me so far and hope that I stay in remission for years to come. I am now starting to train to run a half-marathon and hope my body will be able keep with it and will prove to myself that I have and will not let Ulcerative Colitis control my life.

J.P.’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

2 thoughts on “Ulcerative Colitis and How it Has Changed My Life”

  1. HI J.P.,
    your are a true trooper in the game of UC. Thanks you so much for sharing your story with everyone!

    I was real similar in many ways, my big problem was I waited until massive bleeding before I told anyone. For some reason I was able to do 2-4 hours per day in the bathroom without my wife knowing(not sure what she thought I was up to in there…)

    That’s awesome all the work you’re doing for CCFA. Definitely consider joining a bunch of us in Las Vegas for the half marathon in December if that’s a possibility for you. Would love to see as many UC’ers there!!

    Best of luck with the continued remission, sounds like you got a winning thing going,
    All the best,

  2. Well JP well done and if its any help I was diagnosed about 7 plus years ago. I too in the beginning left it to the last moment as I did not want to talk about it. I lost weight and so much energy that I wanted to roll over and die. I weighed 134lbs and I am 6’4″. I went through all the test and a scope only to find out I had UC. I was told that is it every year you’ll have a relapse and you’ll be on medication forever. Eventually you’ll lose your colon and very prone to cancer. 2 years later I had a relapse the a year there after. Each time I took medication but due to living in Zimbabwe once that was finished that was it.
    To cut a long story short I changed my diet got off the diary, sugar normal tea and cut fried food to a minimal and I have been clear for 4 years and DRUG FREE. It turned out that I was lactose intolerant as a baby so there is something in the food we eat and Stress.

    Good Luck to all who are in the same boat

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