UC Free… Kinda

My name is Katie, I’m 24 and have been dealing with UC since I was 14 and have never been in remission. After being sick and trying to maintain a normal life, I decided to have my colon removed on March 5th.
Symptoms:
I was having abdominal pain, urgency, bloody stool, I was going 15+ times a day, never getting a full night sleep…

I was diagnosed at 14 and after 10 years and dysplasia I finally decided that surgery was my best option.

I have a great Dr. but nothing seemed to work. I have the most supportive family and fiance in the world, there is no way I could have made it this far without them. I think that my friends want to be supportive, but aren’t sure how to be and they don’t quite understand the severity of UC. One good thing has come having this stupid disease and that is my outlook on life. Without sounding full of myself; I am one of the most empathetic people I know. I now look at people and wonder what there struggles entail and I have the mentality that life could be so much worse and that I am lucky to have all of the great things I do.( even though it’s hard to remember that when I’m sitting on the toilet in pain)

I was going 15+ times a day and half the time it was only blood coming out, I ate constantly and only weighed 100lbs. People would always say, “you don’t look sick” which drove me crazy, because I was! I was malnutritioned, had dark circles under my eyes, I was weak and always tired, my joints ached, and the hardest part of all was that my life literally revolved around a toilet. The thought of a road trip or sharing a hotel room sent me into a panic attack.

The one thing I loved that Ulcerative Colitis couldn’t take over was camping.

I love camping and it’s like having a huge limitless outhouse to use and any given second. I had to drop out of college because I couldn’t focus on studying while having blood transfusions and iron infusions on a weekly basis. I also developed erythma nodosum(sp?) which got so bad that I could hardly walk to class). I was so over this disease. I was tired of having to plan my life around the bathroom, having to pack Tp everywhere I went, sometimes putting a paper-towel in my pants in case of an accident while out and about(tmi? I don’t care, it helped out on several occasions.) I decided it was time to see a surgeon.

On March 5th 2012 I had my colon removed. I was so excited and not nervous at all. I kept waiting for the nerves to set in, but it never happened. I have had some irritation with my stoma, but three weeks after surgery and I am back to school and work and feel great!! I have my next surgery in a couple weeks and can’t wait! I can already see the light at the end of the tunnel and it feels great. I know that us UCer’s will never have normal bowel habits again, but surgery is definitely a viable option if all the meds aren’t working. Please feel free to email me if you have any questions or need someone to talk to! I am very open about my colitis and have developed a few tricks that have helped me battle this crappy disease(pun intended)

mccallum_katie@hotmail.com


written by Katie

submitted in the Colitis Venting Area




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10 Responses to UC Free… Kinda

  1. Vicky April 2, 2012 at 8:26 pm #

    Hi Katie

    This story sounds just like mine. I have only been diagnosed and suffering a little over 2 years, not 10, but I have had no relief from diet or meds. I just came out of the hospital for the second time on friday- I needed a blood transfusion and IV meds. Today I finally made the decision to schedule my surgery. I would like to ask you a few questions, so I will be sending you an email. Thanks again for your story, it really gives me hope :)

  2. Adam
    Adam April 3, 2012 at 5:57 am #

    Hi Katie,

    THank you so much for sharing your story!
    I’m so so so happy that you are finally being able to get back to a normal life. You’re very inspirational, and good luck camping this year!1!!:)

  3. Clayton April 4, 2012 at 8:36 am #

    Having surgery today!

    • Adam
      Adam April 4, 2012 at 8:46 am #

      Good Luck Clayton!!

    • Wendy
      Wendy May 23, 2012 at 2:53 pm #

      Clayton, how did the surgery go?

      • Katie July 31, 2012 at 1:50 pm #

        The actual surgery went really well. I ended up back in the hospital due to dehydration, but I guess that’s fairly common. I also had some issues with my ostomy supplies. I was allergic the the brand I got so the skin around my stoma was very irritated, but it was a small price to pay. I’m still getting used to my new plumming, but I felt as tbough I had my life back almost immediately after surgery. I would recommend it to anyone. Life is great without a colon :) feel free to email me if you have any other questions mccallum_katie@hotmail.com

  4. Maria August 19, 2012 at 6:01 am #

    Hi. A friend of mine sent me this website and i have to say it has helped me understand this whole UC desease a bit better. My sister was diagnosed with this desease back in 2001 and has been battling it now til today. I feel awful that i cant be as much of help as i would love to be and it kills me to hear her in pain through the phone. The reason I am writing this is because i am hoping to reach someone who can give me some advice that i can give her to cope with her after surgery issues. She had her colon removed about three weeks ago after about 5 months in the hospital. It is a long story and to simplify it i will say that now she is back home. She is constantly throwing up and cant keep anything down. As a result of all of this she has lost a lot of weight and is really skinny. I am just trying to undertand this whole deal with the after surgery. I know it is a huge step and a great toll taken on her body but i thought she would regain her appetite and the ability to get better. All she can eat have is liquids, broths… How long will the throwing up last and why is this happening? I just want to understand.

  5. Ashley November 7, 2012 at 11:07 pm #

    WOW! You’re story sounds EXACTLY like mine! I was diagnosed when I was 14, and now at 15, I don’t have a colon! I was experiencing the exact symptoms as you! And we had tried all the medicines until remicade was all that was left! My mom, being a nurse, didn’t want to send more harmful toxins into my body! And I was also excited for my surgery! I was ready to get my life completely back! It’s awesome to know people know what you were /are experiencing, and you don’t have to be embarrassed about talking about bloody stools ans stuff!
    Well I hope you’re as happy as I am! And I LOVE YOUR ATTITUDE <3

    • Jill April 4, 2013 at 10:52 am #

      Hi! I’m 16 and I’m on remicade too! It’s weird, but my mom is also a nurse :) I can’t wait to get my life back… I’m having surgery next month!!! How are you feeling now?

  6. Jill April 4, 2013 at 10:50 am #

    I’m going to be having the first surgery next month and I’m really very nervous about it. Can you eat anything you want? I hope the bag isn’t too gross… can you explain? Thanks!

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