May is Crohn's Awareness Month #crohns #uc #ibd

Just today I remembered why I started to blog about Crohn's disease. A friend and I were talking when all of a sudden the memory popped into my head. Since this is Crohn's Awareness month I thought I'd tell you my story.

If you don't know, I have Crohn's disease and believe me, I did not tell anyone about it. I was ashamed, embarrassed and thought of all the diseases in the world WHY did I get stuck with a bowel disorder? Fortunately  it remained controllable until about ten years ago. That's when I went into the biggest flare of my lifetime.  One I've never fully recovered from.

During this most revelatory time,  I discovered the true nature of Crohn's. I ran a fever every single day. It was only 99 so I didn't worry about it too much. After all, when you are the child of an alcoholic you learn very young how to take care of yourself and really, I don't need anyone. Or so I told myself. In my defense, I did call the doc and tell him about the fever and he just said, well you have Crohn's.

To make a long story short I ended up with sepsis. That's an infection in your blood which is life threatening. Two days into IV antibiotics and I was ready to leave the planet. Everything hurt including the drugs that made me  too dizzy to stand and too nauseous to eat. I had pain in my stomach and bowels, in addition to all the wonderful pain that comes with Crohn's disease. One day I could eat and the next day they were prepping me for a surgery that never happened.  

I remember the third night so clearly that I can still bring it to mind with enough clarity to smell the cleansers used. It was late and I was scared. I wasn't afraid of dying, I was afraid for my husband, children and grandchildren. I didn't want them to experience grief yet. Some of them were too young. More importantly, I didn't want the cause of their grief to be me. I loved them too much.

As I was laying in bed,  a feeling of peace came over me while I prayed. I told God that if I died tonight I was OK with it and to comfort the little ones. Then I told him that if I didn't die I would know it was time to get up and start living. I don't remember falling asleep, but I do remember waking up. 

I pushed the nurse's button and when she came in I told her I needed to get up and walk. She wasn't big on the idea as after all I had sepsis. I told her I knew that was true, but I still needed to get up and walk. She went to get me another gown to use as a robe when Dennis came in. He asked me what I was doing and I told him I was going to start walking. While no one seemed to understand the word walk, I grabbed the gown from the nurse, threw it on, grabbed my IV pole and got out of bed...

After which, I promptly threw up.

While the nurse injected me with an anti-nausea drug and I recovered from a head that felt more like a tilt-a-whirl than a mind, Dennis tried to talk me out my desire for adventure. Nevertheless, once the anti-nausea stuff kicked in I was out the door and into the hallway where I commenced walking. I went a little further each day and it wasn't long before I was released from the hospital. It was not easy, but I won't bore you with details.

Since then, I've had the opportunity to witness myself in action. There are times when the pain is so intense I want to die. Literally. Every single day is a struggle. Whether it is getting out of bed in the morning, writing, or just living, it is a struggle. I have had ulcers throughout my entire mouth and eczema that covered both legs. I know what it's like to live on Prednisone and trust me it ain't fun.

I start the morning with more pills than most people take in a month. Then there are the afternoon pills and the evening pills. I have lived with a stomach that refuses to retain food, esophageal spasms which mimic a heart attack, lousy bowels and mega ulcers. So far I have avoided surgery but 80% of Crohn's patients eventually need major surgery.

Because I refused surgery, I have a sleeping colon which means my colon healed while on the big med guns, but is so damaged it doesn't work anymore. I have to take medication to poop. But, I cheat a little. I only take it every 3rd day because the meds rip up my stomach. The truth is, Crohn's is a horrible disease and since my sepsis battle I have made it my mission to bring attention to this rare genetic boo boo  that is susceptible  to some environmental stimuli that forces the gene to express itself.  Or whatever.

While I was checking my usual Crohn's haunts today, I came across the picture above and an extremely well-written and sensitive piece about what it is like to live with Crohn's. 

Imagine being on multiple medications and knowing that it's very unlikely you'll ever be able to come off of them. Imagine the disappointment when yet another "new and innovative" treatment fails to provide relief. Imagine reading the list of known side-effects and wondering if the risks might be worse than the original disease; I often think they should add a label that says, "may the odds be ever in your favour"!

You don't usually see all of the things that a chronically ill person has to do, and has to take, just to get through a normal day. YOU can help them simply by understanding that whether or not YOU see the damage, it has no bearing on how sick they are and how hard they struggle. Try to imagine what they go through,  imagine their pain, and  pass it on.

May is Crohn's Disease & Colitis Awareness Month. ‪#‎crohnsfighter‬ ‪#‎purpleribbon‬

I don't think anymore could say it better than that. 

Thank you, Shannon.

If you can, please tweet or 'like' the blog. In return, I will keep you in my prayers that this disease never enters your household or touches someone you love.

(((hugs)))

Louann