The False Sense of Security in Diagnosis

This past week on the 16th, I hit a milestone. I have officially been diagnosed with ulcerative colitis for five years now. It’s hard to believe that much time has gone by since then. A lot has changed in my life. I have changed.False Sense

I went through my Facebook posts of life post-diagnosis. I was very naive. Being told that it was very treatable, I convinced myself that everything would be ok if I just took my pills. After all, my mom has Crohn’s and she’s never had any big problems with it! One of the first things I posted after diagnosis reads like this:

 

“I’m NOT worried about my current condition.

You shouldn’t either. Everything’s gonna be just fine.

Thanks for all your support and prayers. I love ya’ll.”

At least it’s treatable, right? Right… right… “treatable.”

Doctors are awesome and extremely smart. I have the utmost respect for them. They have worked very hard to get where they are. Therefore, I do not mean any disrespect toward them in saying what I’m about to say. Something I think that is very important upon initial diagnosis is having a sit down, one-on-one deep conversation with your doctor. I believe that the lack of this type of doctor-patient conference is the reason why there is so much inaccurate information out there about Inflammatory Bowel Disease.

Upon initial diagnosis, my doctor told me, “You have ulcerative colitis. So many people out there are living their lives and you’d never know they were sick. Once we find the right treatment for you, you’ll be out living your life, too. In two years, you’ll know more about your disease than I do!”

So, what did I interpret that to mean? “Cool, I take my pills and will get better. Obviously since I will be able to understand my disease, it can’t be that complicated! If my doctor isn’t worried, I shouldn’t be either… besides, Mom is doing GREAT! She’s not on any medications.”

Going through the posts on my Facebook page, it is clear that I slowly started realizing it wouldn’t be so easy. Soon the Prednisone reared it’s ugly little head. The joint pain and swelling started. Preventing me from doing normal things like walking or karate-ing. The doctor who diagnosed me told me I should probably take it easy in karate for a while until I felt better. Insert frustration here. The following post hit me with all the “feels”:

“Just limped out to my car after being awakened by severe

knee pain to grab the pain relieving gel from my karate bag.

CURSE YOU PREDNISONE! CURSE YOU! 

Maybe wrapping my knees up with bandages will help.”

Ha! And I did wrap them. All that did, however, was stop the fluid retention from traveling into my knee area. You could visibly see where the swelling stopped at the wrapping and the bandages started cutting into my skin. Don’t even get me started on the joint pain associated with the Prednisone. I can’t tell you how many nights I woke to excruciating pain. This pain is literally like no other. So bad I would cry from the achy, bone-crushing type of pain. Nothing I did helped. I just had to let it pass. And I could just forget about karate entirely.

Not only was the joint pain excruciating, it also made my knees so weak, I could barely walk. Let alone practice any karate stances or kicks. It was pointless. My spirit was slowly crushed. I felt like everything I knew was being taken from me. My health… my black belt.

Yeah… Prednisone is definitely amazing in that it helps your body to heal itself, but taking it only replaces one problem with several others. I’m not saying you shouldn’t take the drugs your doctors give you. Obviously it helps otherwise doctors wouldn’t be prescribing it. But once you start taking it, you’re in for a very difficult time.

The diet changes were also difficult. The doctor never talked with me about diet. But I was convinced that all I had to do was cut out a few foods. Mom has trouble with fruit, so maybe I should start there. It wasn’t long before I realized that I would have to cut out a lot of healthy things that had never bothered me before. Rice, bananas, salads, oranges, oatmeal… anything with a lot of fiber was misery to eat and I would pay dearly for it every time. Eventually, I had to cut out coffee, too. That was also extremely frustrating. I love, love, love my coffee.

If I could sit down and have a conversation with myself, knowing what I know now, I think there are several things I would say…

  1. This is a lot more complicated than you know. Yes! Mom is doing ok, but her story isn’t everyone’s story. There are a lot of people who are NOT doing well.
  2. You are going to need a lot of support. You should probably go ahead and sign up for Twitter. The support is out there… you need to go find it!
  3. Don’t believe in those miracle cures. There is NOT a cure. And NO! Surgery will not cure you. It CAN improve your quality of life, however.
  4. Don’t lose hope. You are going to have some REALLY bad days. But you will get through them.
  5. Brace yourself. This disease is going to change you in ways you never thought possible. And if you let it, it will change you for the better.