Tena’s Story – 17 Years of Ulcerative Colitis

Tena diagnosed with colitis Introduction:

I have been struggling with ulcerative colitis for 17 years now. I have been on many medications including prednisone for five years straight which took a great toll on my body. I just recently graduated nursing school and have two beautiful daughters. I was very young when I was finally diagnosed, literally on my death bed. I was misdiagnosed for over a year and am great full for the doctor that saved my life.

My Ulcerative Colitis Symptoms:

Joint pain, diarrhea, abdominal pain, loose stools. I am currently flaring at this time.

I was diagnosed at 10 years old and my condition was so severe that I almost had to have my colon removed at that time.

I was emergency admitted and had a PICC line inserted because I was so dehydrated I keep blowing veins. The doctors told my mom I was on my death bed. I had so much blood in my stool that it looked like a pitcher of red kool- aid was poured in the toilet. Being 10 I was scared to death. Dr Fred Rothstein saved my life and colon. I was put on 9 prednisone pills daily. It took over 5 years to taper off the prednisone. Over the years I have had several flare ups which have landed me in the hospital a handful amount of times. Living with UC has impacted my life in several ways. I won’t go anywhere that doesn’t have a public bathroom. I very rarely go out to eat and if I do I make sure I take an Imodium before I go. But one thing is that I don’t let my disease hold me back, I graduated nursing school in December 2011 and I have two beautiful daughters. I am at this time flaring, so I have put my self on a clear liquid diet and am awaiting my appointment on Wednesday. I am always scared til this day to go to appointments. I currently get colonoscopies every two years since my chances of cancer are greatly increased since I have had the disease more than 10years. I have a very supportive family. I remember being younger and during a flare up my mom made my sisters go on a clear liquid diet when I had to be on one. My oldest sister gave me my enemas when my mom was at work. You can’t get much better than that.
Where I’d Like to Be in 1 Year:
I wish I didn’t have UC any more but that is unrealistic!
written by Tena
submitted in the Colitis Venting Area

5 thoughts on “Tena’s Story – 17 Years of Ulcerative Colitis”

  1. Hi Tena,

    Sounds like you have an incredibly supportive family, that’s so great to hear. And, the fact that you’ve made it through a 5 year stretch of nonstop prednisone is also amazing!

    I wish you and your family the best, Stay Positive!

  2. Hi Tena…

    Wow! You’ve really been through it, haven’t you? I hear stories like yours, time and time again, and I can’t believe how bad your and some other UCer’s symptoms are!

    I have had the dreaded UC for 13 years, and it’s been bad at times, but never as bad as yours, and some others’ has been. My gosh…how I feel for you!

    I never went on the prednisone, because I was afraid of all the things I had heard about it, and getting ‘stuck’ on it, like you did. That sucks. I’m sorry to hear that.

    Good on you that you went to school and did what you wanted to do! This disease can make you feel like you don’t want to do anything sometimes. I admire you!!

    When I was diagnosed, I sold my little consignment boutique, because I could no longer run it. The store I rented also had no bathroom! I’d go 10 hours some days without going to the john! What a moron I was. I would never put myself through that now. I could not hang in there owning my own business, but kudos to you for reaching your career goals!


  3. hello there i think your very brave for being on prednisilone for that long because of all the awful side affects! i have ulcerative colitis and i got diagnosed when i was 17 after having my little girl… im now 19 and i am still having problems and currently on prednisilone and have been for a few months now but unfortnatly every time they take me off them i flare up again realy bad and its also caused me to have osteporosis too :(
    i think what youve done is amazing and having a suportive family is great unforntly i dont have that as much :(
    if you could get back to me on how you coped would be brilliant thank you :)

  4. Im happy to see you made it through nursing school. I just started prednisone about 2 weeks ago, and I am trying to make it through the respiratory therapy program, It gives me hope to see that you have made it.

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