Crohn's Awareness Week-My Story-Co-Existing with Crohn's

I promised I'd be an advocate today and share my story. If you can, please share this blog with as many people as possible. FB, tweet, or whatever you can. We need help getting the word out that we desperately NEED a cure.

I have Crohn's disease.

But it does not define me.

Yes, there are days I lay in bed sick of the pain, miserable with the affliction, and on occasion a few tears drip down my face (like last night). However, I refuse to BE Crohn's and try, the best I can, to peacefully co-exist with this stranger that invaded my body.

The first time I remember being sick enough to go to the hospital was when I was pregnant with my daughter. My mother rushed me in, they gave me anti-nausea drugs, pain medication, etc. I would go without eating for a few days then feel better. This would happen once a year--or so, but never enough to make me hunt for a diagnosis.

When I was thirty-two I lost forty pounds in two months. I was so sick, but the doctors told me I had anxiety, depression, panic attacks. They said I felt ill because I was so anxious. They plied me with antidepressants, anxiety medication, etc. Eventually, the symptoms retreated and except for bouts that came once or maybe twice a year, I accepted the Irritable Bowel diagnosis.

About seven years ago the 'sickness' as I had come to call it started coming once a month instead of once a year. Then it went to once a week. Shortly, it was every single freakin' day.

Twice I went to the doctor. I begged them for something to help me. They gave me Cholestyramine which is a bile acid sequestrant. It worked for awhile until my Triglycerides shot to over 1200. There went my miracle drink for my Irritable Bowel Syndrome.

On the days the vomiting was at its worst, I could down an entire bottle of Pepto-Bismol.

Ewww...

A typical day out would be one in which I knew where every bathroom was. Otherwise, I simply didn't leave. I know my friends wondered why I'd disappeared, but the symptoms of Crohn's are not conducive to casual conversation. Besides, I felt so lousy it no longer mattered to me what anyone thought. I know there are those that understand. For that, I thank you.

Back to the doctor. I saw someone I hadn't see before. He asked me what I did for a living and after I told him I was a writer, he said, and I quote, "Oh, well then. You're sensitive. You need to stop eating wheat."

Out of the room he went and when I saw him again he had a diet for me to try.

By this time, I was frantic. I didn't know how to explain to these people how ill I was. The next time I went in, after I'd lost 20 pounds,  he said, "Good for you! The diet must be working!"

What he didn't know, and I was too ashamed to say, was that I'd stopped eating.

My hair fell out. Exhausted, my nerves were shot. I stopped going out all together. I was afraid to leave the house and more than anything I was terrified of eating. I wanted to die. I couldn't live this way anymore.

Then the blood started. At first it was just a little then it was almost a constant flow. I knew something was really wrong--sometimes you just know these things, but I didn't know how to communicate what I was feeling. I made another doctor's appointment but feared they'd just run me off and give me another diet.

The nurse came in. She asked, "Why are you hear today?"

"Oh," I said. "There's a little blood in my diarrhea." I HATE to exaggerate. Especially when talking to nurses/doctors.

"You have bloody diarrhea?" 

I shook my head. "No. There is blood IN my diarrhea."

Well, that got everyone moving. I remember thinking, I should have told them about it before. But I'd assumed it was hemorrhoids. For two years I ran a steady temperature of 99 degrees. Sometimes it would go up then it would go down, but it never went below 99. A couple of times my doc did some blood work, looking for Lyme disease or whatnot. Everything came back normal.

It took me a total of seven years to reach this point. Seven years of pain, fear, and panic.

By the time of my Colonoscopy, I had ulcers just about everywhere you could have them. My body was unable to absorb vitamins, especially B, B12, and D. My blood count was so low it was amazing I was walking around. I was so weak I had to lean on my husband to make it in and out of doctor's offices.

Crohn's doesn't just hit your gut. It can strike anywhere from the mouth down. Sometimes I get ulcers on the inside of my mouth and often in my stomach.

A diagnosis of Crohn's disease came about one week after the Colonoscopy. But my doc hadn't waited. He saw the ulcers and had already started me on...

Aminosalicylates.

Who knew I was allergic to sulfa drugs?

Just because my brother was never entered my mind and no one thought to ask me.

I figured it out two weeks into treatment.

Another ten pounds down and I was close to being a walking scarecrow. Not only did the treatment not work, it made me worse. My face sagged, my skin sagged, and I looked like The Walking Dead. No--I will not show pictures.

Next line of treatment, Prednisone and Mercaptopurine. We'll just say Prednisone made me nuts. Ask my friend Marylou. Poor thing. She's still not speaking to me.

Once off the Prednisone I was left on Mercaptopurine. It's a chemo drug that suppresses the immune system. However, it just wasn't enough. My doc added Humira. Between the two I nearly went bald. But...

I remember thinking, okay, this is it. I'm gonna be cured.

On a warm Sunday morning, I woke up with a fever. 104 if I remember correctly. I was a little out of it. My husband kept trying to get me to the hospital but for whatever reason I refused to go. The following morning, I got up, dressed for work, and left. Just like I had done every single workday. Never had I missed a day of work or writing something/anything due to Crohn's. I refused to let it define me.

Boy was I hot. I walked into my office sat down, got up, turned on the air conditioner, sat down. My computer screen was a little wobbly. I messed around a little, until about 11 am. I really felt weird. Everything was off and I had this strange tingly feeling all over me.

I called my husband and he picked me up. We went straight to the hospital.

The nurses drew a lot of blood, they rushed around, concerned looks on their faces. Eventually, the doc came in.

I had sepsis and it was life threatening.

I remember being in bed, being rolled down the hallway, the doc explaining to me what sepsis was. I couldn't take it in because they'd shot me with morphine to keep me sedated. My husband looked worried but I just floated.

Sepsis: Is a whole body inflammatory state generally triggered by an infection.

The next week was filled with fluid, IV antibiotics, and my buddy the pole, who went everywhere with me. On the second day, I told God I was ready to go if he wanted me. I loved my kids, hated no one, and had forgiven everyone everything I could think of. I fell asleep knowing and feeling that I was at peace with myself. 

When I woke up Wednesday morning, I knew I wasn't going to die and that I'd better get up on my feet and start moving. After arguing with the doctors/nurses they let me use the restroom. As soon as my husband arrived I hit the halls. I walked until I could walk no longer, then sat in a chair to rest. Me and my pole went everywhere. Including the business office when we took a wrong turn.

You should have seen their faces...

I was home by the end of the week.

Because I was on Mercaptopurine, I had to have twice monthly blood tests. Everything came back great. Eventually, the doc took me off twice a month and put me on every three months. My first three month test came back and my phone rang at 8:30 pm.

Never, ever, have I received a phone call with good news from my doc at night. Be that a lesson for you. Don't start chatting because they always have bad news.

"Well, hi doc! How are you?"

"Have you taken your Mercaptopurine this evening?" he asked.

"Sure have."

"Do not take anymore! I just got your blood tests back. I need to see you tomorrow."

I ask, "Do I need to go into the bathroom and throw up?"

"No. You should be fine until tomorrow."

I hung up the phone wondering what might happen in the meantime, but grateful I didn't have stick my finger down my throat.

Of course the results were bad. My kidneys and my liver had gone downhill fast. Now, my liver would recover, but my kidneys not so much. The liver is the only organ in the human body that regenerates. Fortunately, I don't drink so my liver is doing fine and the numbers are up. Not so for my kidneys, but I'm not on dialysis and for that I am thankful.

My doc ran some genetic testing on me because he'd received an offer from Prometheus labs to do some free testing. Prometheus offers highly specialized tests that can tell a physician what the odds are his patient will develop complications from an inflammatory disease.

Mine came back at 80%--not good.

Since that time I have developed Ankylosing Spondylitis, degenerative disc disease, and I have scoliosis.

Who knew how much fun this would be?

AS as I shall call it, is a chronic inflammatory, rheumatic disease that affects the back. In other words, Crohn's is attacking the tissues around my back, causing them to inflame which leads to great pain, and forces the discs to blow out. At least in me.

Terrific...

Then, just last week the phone rings at 8:00 pm. Why do docs like to call at 8:00 at night?

"Hi, Louann. This is your doctor. I need to see you as soon as possible. Can you come in Monday at 8:50?"

By this time I'm immune to bad news. I figure whatever it is I'll find out soon enough. "Yeah, whatever."

Now my thyroid is under attack by this strange inflammatory condition that refuses to let go of me, but the fix is easy. Another pill to add to my growing collection.

That's pretty much my story. It's where I am today. My next step is surgery--that's when they start cutting out the bits and pieces of inflamed tissue from your bowels.

I so do not want to go there.

In some ways, I'm extremely lucky. My case was bad enough for the big guns (medication) which stop fistulas in their tracks. I'm not going to explain what a fistula is. If you want to know you can look it up. If you have Crohn's you know what it is. Trust me, it isn't pleasant.

I never know what my life will be like from one day to the next. Over Thanksgiving weekend I felt wonderful--then bam--a flare hit. Haven't been the same since. I fear the Humira (another drug that lowers the immune system) isn't working as it once did. The flare's come more often and are more intense.

And I hate Prednisone. It truly makes me crazy. Just imagine being on triple doses of speed and trying to act normal. I knew when I cleaned the bathroom with a toothbrush that I'd gone round the bend. But damn. My office never looked cleaner.

The pain that comes with Crohn's can be unexplainable. Just someone touching you can make you want to strike out at them. You don't want to talk and you just suffer until it goes away. Still, other than sepsis, I've only missed a few days of work.

My work and my writing are my bastions of strength. The love I feel for my family and friends is who I am. I still refuse to define myself by this disease.

I've run the gambit of diets. The Specific Carbohydrate Diet, the Paleo Diet, the Liquid Diet, the eat nothing diet. I'm at the place now where I eat what I can tolerate. And that's it. I drink my veggies and my protein because I can't digest the real stuff. The easiest things for me to eat are white rice and noodles. I can tolerate homemade Italian and a kind of butter sauce I've created.

I do eat the things I love on occasion. Sometimes I can digest them and sometimes I can't.

It is what it is.

I wanted to add the worst thing I have had to give up since Crohn's. I love to walk. I live in the foothills of the Sierra Nevada Mountains. There is no place, at least to me, more beautiful. I used to take long hikes into the country, sometimes my husband and I would just sit on the rocks gazing at the clouds.

I don't do that anymore. I don't  have the strength or the stamina. On the upside though, since no one had ever considered giving me a thyroid test, and I had never asked for one, my doc feels that within a month or two I might--just might--get my energy back. She thinks that maybe I've had this issue for awhile.

I hope so.

That's my story. The good, the bad, and the ugly.

If you know someone with Crohn's give them a hug this Crohn's/Colitis Awareness Week. Ask them if they want something, buy them something special, or just sit and watch a movie with them. Show them you care and more than anything else, that you understand.

(((hugs)))

Louann

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