Independent LIfe Not Going So Well

recent picture of Courtney

recent picture of Courtney

Hello, my name is Courtney and I have UC. I am nineteen and I was diagnosed with UC when I was sixteen. I’ve had two colonoscopies so far and I am told I will need one every year from now on. Having UC is so stressful and at many times depressing, so I thought it would be a good idea to talk to people who are going through the same thing.

Some more about me:

I’m from North Carolina and I’ve been here all of my life. I love to do things that relax me and take me somewhere else like reading or watching TV. There is nothing better than getting away from this world sometimes. I am very smart when it comes to academics but I can be very ditzy in normal day to day conversation.

Symptoms:

I am currently having a flare up and I have to say it’s one of the most horrible ones ever. There is running to the bathroom every day and seeing the blood that always freaks me out and there is being tired all the time. When it’s time to sleep it’s so difficult and frustrating sometimes I’ll end up in tears because I just can’t sleep. Worst of all is the pain. The horrible, horrible pain that rips me apart and leaves me shaking, covered in sweat, in the bathroom floor.

Independent LIfe Not Going So Well

I feel like UC has been making the attempt to destroy my life from day one. I missed so many days in high school because of UC and they tried to fail me my junior and senior year. I was straight A student and it took a lot of effort considering how many days I actually missed. I feel like no one around me understands what I go through. I look fine on the outside so I must be fine – right?

Its hard to explain to my friends why I can’t come and party with them or go to that Mexican restaurant they always go to. How do I get to be a teenager/young adult when I deal with pain and embarrassment all the time? It’s not my goal to complain to the world about my problems. I do understand that people are sicker than me but it’s hard to think about when you’re trying to deal with your own life.

The doctor tells me stress can make the UC act up more. What I would really like to know is how am I not suppose to be stressed? I work and go to college and I pay my bills like I’m suppose to but it’s hard sometimes. Any tips on dealing with the stress and the pain?

I recently had a colonoscopy because I’ve gotten a new doctor now that I’m no longer a minor. I thought maybe she’d look, come back and tell me it isn’t that bad and that she could fix it. Wrong! My new doctor comes back to tell me that it’s the worse case of UC she’s ever seen and she took several biopsies. She starts to tell me what they are checking for but all I hear come out her mouth is cancer. I am waiting for the results to come back and I believe this is the most stressful few days I’ve ever had in my life.

Please wish me luck and I’ll take any advice you guys choose to give me.

Apriso 0.375GM 4 a day
Omeprazole 40MG 1 a day
Mercaptopurine 50MG
Ferrous Sulfate 325MG 2 a day
Folic Acid 1MG
Humira

prednisone works but it sucks

written by Courtney W

submitted in the colitis venting area




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6 Responses to Independent LIfe Not Going So Well

  1. Tom
    Tom July 29, 2014 at 5:55 am #

    Courtney

    Just to put your mind at rest, biopsies are always taken to look for microscopic cell dysplasia (pre-cursor to cancerous cells). Everybody has this done and it’s highly unlikely anything nasty will be found. Perhaps she should have explained that it is routine and there is nothing to worry about

  2. Marsha July 29, 2014 at 7:21 am #

    Lots of prayers going your way. I’m sure it will all be okay, but hope your flare ends soon. I’ve been having one now for 7 months with the doctors wanting to start me on humeria. I DON’T want to go there. I’ve been on the SCD diet now for a couple of weeks and I’m seeing great results!! Please try it!!

  3. vinod July 29, 2014 at 7:57 am #

    I have been going through the same for last 3 years. In Jan it was worst. Since then I started doing some natural tricks and it paid me well. one and last start yoga. When i say yoga it is not about assnas (poses) its about breathing(pranayam) every morning 1 hour atleast. do not expect result right next day but be sure you will be amazed after 3 months. I have no symptoms now (almost stopped all medicine only 3 mesalamine 400MG each a day) . I also changed my life style mainly eating habit. I am vegetarian so did not took me long to be on simple diet . no fried food, no oily, no spices , no raw food, salad, no milk and milk products..

  4. B.Tex July 29, 2014 at 10:09 am #

    I know the feeling of what you’re going through Courtney. One thing that did help was to at least let some folks know what you’re going through, and what you have to do in order to keep UC under control. Like going out with family, and friends. I had to hide it for a couple of years, and just keep rejecting invites after invites. I was diagnosed when I was 21, now I’m 23. Finding things to help be stress-less truly does help. Taking a couple minutes out of your day to just go for a walk, or sit on the couch enjoying the quiet. To not think of anything of what you have to do or need to do. I know it is easier said than done, but it does add up and it does help. Over time, it will get better. If finding folks to talk to about it or just to have a friendly chat to get your mind off of anything, I do suggest that as well.

  5. Cat August 6, 2014 at 10:15 am #

    Hi courtney,

    After reading thaf i just want to give you a hug! I dont think my flare is as bad as yours sounds. But i understand how it feels to be alone.
    When i was first diagnosed, i spent a semester between home and class during my first yr of colege. The next semester, i had a reaction to a drug and missed over a month of class. Again i shuttled between the couch and the doctor-and when i could, class. When i got back to school regularly, it felt like everyone moved on without me.
    This summer, i didnt see friends for 2 months. Some have been so understanding, but most lose touch and move on with a backwards glance or worse, become annoyed that i dont go out like its my fault. They dont understand-like you said, sometimes we look “fine” so people ignore our honest, if vague reasons why we cant go out/go to work/class.
    Let me know how it goes. I wish you the best.

    • Courtney August 11, 2014 at 11:52 am #

      Thank you for sharing with me. It made me feel a little better to hear that someone is going through or has gone through the same thing. It seems that my spiral down has ended and I’m getting better. The biopsies were fine and my new doctor has raised the dosage on my humira. I’m coming out of my flare up. I feel like I’m on the doorstep of remission and I’m cheering the whole way. Soon enough I won’t have to make excuses and I’ll have fun again but I plan on being careful. I wish you luck, and I hope you feel better soon.

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