Ulcerative Colitis Tips


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UC Girl and the Fight for Colon

Introduction:

I don’t gamble. I win.

When people give me stink eye, I understand. I’d be jealous of my good looks, too.

I’m awesome. I’m also smart.

I betcha I run faster than an Olympic sprinter when I need a toilet.

 

Signs of the Colitis Boogie Man:

In remission, but still experiencing constipation and diarrhea, gut pain, inflamed joints… you get the picture. BUT NO BLEEDING! BOO-YAH!!!!

My Story:

I was diagnosed six months ago after going to my family doctor for rectal bleeding. (When I pooped, I pooped blood and only blood because I lost my appetite and wasn’t eating. No food, no poop.) She sent me to a pysch ward because I was having panic attacks. (I think most people would panic when they start crapping only blood right after moving out of their parents and graduate high school.) When I got to the looney bin, I was so dehydrated and malnourished, I couldn’t walk more than a couple feet before I would collapse on the floor. I weighed just over 100 lbs- I lost 25-30 lbs in only a month of having that flare.

Needless to say, I was in such poor shape, that I was sent to a medical unit. I don’t remember much… I was high on dilaudid and morphine for the pain, and I was taking prednisone to help with the flare. I was told I either have Crohn’s or UC. I didn’t know what that was, and was afraid it’d kill me. At the time, dying seemed feasible. I mean, hello! I was shitting bright red blood and nothing the doctors did fixed it. The doctor would neither confirm nor deny that I was dying, and that scared me even more.

Fast forward six months.

I am alive, I don’t poop blood that often anymore,

but I often am in pain.

I try not to show it, but… sometimes I can’t help it. Someday, I’ll be able to run again without my gut screaming in pain. Someday, I’ll be able to eat the spiciest, greasiest food without having to curl up with a heating bad and a handful of Vicodin.

Someday, I’ll be able to go somewhere without looking for a toilet.

By the way… ever notice that the word “toilet” begins with “toil”? The guy that came up with that word clearly had IBD.

 

Where I’d Like to be in 1 year:

Healthy. I want a cure for UC that doesn’t involve removing five feet of my gut.

 

Colitis Medications:

Prednisone- God awful. I suffer from anxiety and depression, and this just made it worse. I couldn’t watch a commercial about a child not getting his way without sobbing.

Morphine- Being on morphine is like taking a journey to heaven.

Dilaudid- Being on dilaudid is like being in heaven.

Vicodin- Works ok… but isn’t any fun. (hehe)

Remicade- Coolest sounding drug ever… but it stopped working the third time after I took it. :(

Humira- I am terrified of needles, but this drug worked really well. My GI took me off it bcause I freaked out so often whenever I had to give myself a shot.

Azothioprine- Supresses the immune system, but without needles. Yay! I seem to be doing ok with it.

written by UC Girl

submitted in the colitis venting area




diarrhea

6 Responses to UC Girl and the Fight for Colon

  1. OrdinaryWorldWhereRU May 26, 2012 at 2:42 pm #

    UC Girl – Yes, dilaudid is like a little piece of heaven isn’t it? I had it after my spinal fusion and it was the 1st time I had been pain free in a while and it didn’t even feel like I was on any medication whatsoever. I wish they would sell it OTC! I read your other posting and I was wondering why the doctor said you are at high risk for toxic megacolon. Did he give reasons? I hope things settle down more for you. I don’t have mucous but I do still have a small amount of visible blood the 1 time a day that I go. I will actually skip a day and not go at all. That actually seems to cause more problems. You have a great sense of humor. Hang in there.

  2. Sara May 26, 2012 at 9:12 pm #

    The lastflare I had was very out of control. My family doctor was dumb. All she’d diagnose is that I had an elevated white blood cell count. She was confused cause I was otherwise healthy. In the weeks leading up to the hospital, she said I was having severe panic attacks. My mom rushed me into ER. No one hd any idea how bad I was bleeding. I’d go thirty times a day, and since I wasn’t eating, I was literally pooping only blood. I was initially admitted to the pysch unit, but I kept falling down and was running a fever. The nurses in the pysch realized I was just very sick. By then, my colon was so thin that it was on the verge of breaking open, my surgery team said it was the worst UC they’d seen. :( They were ready to run me to er in a moment’s notice. My dad said I was dying very slowly cause they couldn’t stabalize me. Even in the hospital, I was losing weight rapidly- abt a lb a day… It sucked. But here I am. :)

  3. Wendy
    Wendy May 29, 2012 at 6:19 am #

    I want to blame the doctors but in a way I don’t. I would be tempted to sue them, but I guess they can only go on what they know. I would be mad if I were you, but I’d probably end up letting it go. You have a good sense of humor. I can’t keep writing because my child needs me and I have to get her breakfast and I am watching my neighbor’s child today as well. I have UC as well, but I am doing well at the moment. I am thinking about removing my colon, but – that’s scary and I’m doing so well at the moment. I haven’t tried probiotics yet and I want to try them. Best of luck with the UC. Wendy

    • Carol from Colorado
      Carol May 30, 2012 at 5:54 pm #

      I am thinking about having my colon removed if the Imuran does not work. I am sick of these scary drugs. Well Remicade would be next then Embrel and from what I have read they sound terrible. I am spotting a little blood once or three times a day right now but have no cramping or diaherra. It is kinda strange right now cause I am not cramping.

  4. Anne in CA May 30, 2012 at 9:49 am #

    My daughter has UC and she saw a needed to see a counselor for a little while. I think it is ok to be terrified by pooping blood. PLEASE read what Adam and many other people have to say about the DIETARY control of UC. Once we changed the foods that my daughter ate (eliminating some and rotating all others) she has been fine. She had to eliminated Wheat, Gluten, Corn, and Soy. All other foods we rotate. Very few packaged foods…almost everything fresh made, but well worth the the it takes. She is off all medication except for PROBIOTICS and has returned to her healthy 120 lbs, is running again, playing volleyball, tennis, etc.
    I really encourage you to take the time and effort to research dietary control, and talk to many people you have here on this blog site to help you.

    • Carol from Colorado
      Carol May 30, 2012 at 5:56 pm #

      I drink Almond milk in my decaf coffee. Is that not a good thing?

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