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One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

10 Years with UC and I’m Filled with HOPE

dancing

Hey All! My name is Kayla and I was diagnosed with UC quite a few years ago.

Recently, I got extremely into reading blogs, support groups and internet forums. There are so many people with such great stories to tell! My story is neither entertaining nor depressing however, it is real and I hope it will be appreciated.

When I was 14 I was diagnosed with UC and I thought it was the end of the world.

It was not until now that I realize it has been the biggest blessing of my life.

The diagnosis was difficult as I was being shuffled in between Dr.’s trying to figure out if I had Crohn’s or colitis. In and out of hospital stays, I missed a lot of high school and missed out on a lot of time with friends and family. For most of my days, I was busy coping with the symptoms and catching up on sleep. My family was extremely supportive but all I wanted to do was pout and complain about how life wasn’t fair. My first 4 month stay in the hospital was disappointing and medications were not helping. Unfortunately, or fortunately, my intestines were so thin, even surgery was no longer an option. By this time I had arthritis and open ulcers in my mouth and on my skin. Sticking to a positive outlook, I took to the battlefield and started my life long fight with UC.

Second round in the hospital was even better… Pyoderma gangrenosum. I strongly, strongly urge you not to look that up on the internet…please for the sake of your eyes, let it go! PG was my biggest worry this time around. I cut myself climbing a fence around my 17th birthday and two days later I had a gaping hole in the back of my thigh. Now, it wasn’t a huge man-eating spot but it was a slow growing deep cavern about the size of a half dollar. At this point I wasn’t sure which was worse, the blood exploding out of my backside or the rounds of residents each morning examining my thigh every ten minutes once the clock hit 5am. I was officially a lab rat and I will say, I was not a fan. I didn’t think my life could get any worse, I had UC, mouth ulcers, a huge hole in my thigh, arthritis, and a horribly broken down mental state.

I left for college and went to UC Davis. Bright eyed and excited for the world, I set sail to become a vet. The year I turned 19 I received a phone call from the CCFA. I had previously mentored some children and they were asking me if I was planning on volunteering at camp that year. For some reason, I said yes, and it was the best decision I have ever made. I became a camp counselor at The Painted Turtle, a camp for children with chronic illness and had a summer that changed my life. Over 100 kids with Crohn’s and colitis, ages 8-16 showed up at camp that summer. I met children with ostomy bags at 10, and an 8 year old who gracefully fed himself every meal by shoving a handy tube down his throat. I was empowered, touched, and inspired by 100 little beings who wanted nothing more than to be normal. I was half expecting my cabin to join my pity party but I was so wrong. They not only lifted my spirits, but they also reminded me that life is precious and no matter what, I can do anything I set my mind to. I wanted to change someone else’s life that summer but instead I was the one who was changed. I stopped worrying about medical diagnosis, what I could and couldn’t eat, whether or not I could always find a bathroom and I learned to just live. I have returned to camp every year now for 5 years. I have sang, danced and ate spaghetti with my face with some of the finest, brightest and most talented children of our future. They are incredible and have a profound understanding that UC is not a curse but a gift.

Last year, I applied for graduate school. I knew what I wanted to finally do with the rest of my life, what those campers did for me and that was give others hope. Vet you say? hardly… I am a 2nd year student of clinical health psychology about to start my dissertation on internet based therapy for teens and young adults with chronic illness. My Colitis sucks…I won’t lie to you, but it has given me so much more than it has taken away. UC has opened my world, and shown me that life is full of hardships and low points but a good life is full of hope and positivity. Our minds are powerful things, they can make us sick, they can make us well, and they most importantly make us who we are. I am proud of you all for finding support and sharing your stories because in some ways we are all a very extended, bonded family. In the end, I guess its not really a battle I am in but rather a journey. A journey that so far has taken me in a promising direction. My life has not been rainbows and sunshine, in fact it has been nothing close, but I love it and I am thankful for it every day.

Medications:

I love love love VSL DS#3. I had a flare about a year and a half ago that took about 8 months to finally get control over. I swear these little army bugs, are what put me back on the path to remission. If you believe in probiotics, check it out! VSL DS#3 is made especially for UC and its fantastic!

written by Kayla

submitted in the Colitis Venting Area

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7 Responses to 10 Years with UC and I’m Filled with HOPE

  1. Trina
    Trina November 30, 2011 at 6:30 pm #

    Thank you for sharing your story and lift my spirits.

  2. Erica November 30, 2011 at 6:48 pm #

    Agree! Beautiful story,Kayla! Enjoyed how your life was forever changed and blessed by the kiddos positive minds….love it! We can ALL learn a thing or two from them…:)) Yes, we have this dis-ease it’s true and OUR MINDS do play a huge role in our destination…..It’s easy to pity party and I tell myself daily, others have it way far worse than me… BACK to reality! Check!

  3. Rebeka
    Rebeka November 30, 2011 at 7:21 pm #

    Great post, Kayla.
    I was smiling as I was reading it and am still smiling now. A couple weeks ago I found out about Camp Oasis on the CCFA website and I was going to apply for volunteering rightaway. I am so excited about it. I am expecting exactly what you wrote, and I am looking forward to it so much! Can’t apply yet though, because they don’t have the dates yet, I was told to check back in January. I really want to do it. I think it’s extremely important that they have that camp for the kids (and for us?)

    • Kayla
      Kayla November 30, 2011 at 9:17 pm #

      Please please apply! The volunteers are amazing and we tend to have just as much fun as the kids! Camp Oasis is fantastic and I can assure you it will be the best week of your life. I hope to see you there!!

      • Rebeka
        Rebeka December 1, 2011 at 12:18 pm #

        Painted Turtle is the one you go to? That’s right here :) so I might really see you there!! I will definitely apply. You should have seen me when I first discovered the camp, I coudln’t talk about anything else the whole night. I love that they do this for the kids and I want to be part of it.

  4. Adam
    Adam December 1, 2011 at 12:37 am #

    Kayla,

    You ROCK!!

    This planet/galaxy needs more of you!
    You’re amazing, keep up everything you are doing.

    I can’t stop reading your story!

  5. Victoria December 5, 2011 at 2:07 pm #

    Kayla

    Ty so much for sharing your story. I got diagnosed with UC a year ago. I am 29 years old. I’ve always been very ambitious and ougoing, but this first year has been rough. Im currently dealing.with a flare thats been going on for four months now. There’s been days where I’ve cried just being in pain and overall tired. But you are right about one thing, everyday I thank God I have another day.your story is very inspirational. I hope to.get to the point you are at soon :-)

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