Saturday, May 29, 2010

Crohn's Disease

As you can tell from my first 2 posts, this blog centers around my life with Crohn's Disease.

It has been a long, strange trip so far, and want to share it with you. I am writing a book about my life, and experiences over the last 20 years or so, but I am also using this medium to try to raise awareness about this disease.

When I was diagnosed I didn't have the internet, and only had my doctor and brochures to read to learn anything about it. I didn't even know anyone else with it. But now all you have to do is "Google" Crohn's Disease, and a wealth of information is at your fingertips. Not only that, but you can find and join support groups on line that can be so helpful.

This is my way to give back, and to hopefully help someone else like me, who has maybe found themselves feeling alone, and misunderstood. Or maybe someone that has a friend or family member with Crohn's, and you want to learn more about what they feel or are going through.

It has not always been easy, but as I have stated above, there have always been learning experiences.

So be my new friend, and I promise you will learn something new!

Thursday, May 20, 2010

Happy World IBD Week Everyone!

For those of you that don't know, IBD stands for Inflammatory Bowel Disease or Disorder. These include Crohn's, Colitis, Diverticulitis, Irritable Bowel Disorder and others. They are all diseases that deal with the digestive tract causing a range of symptoms, from mild to severe. The main symptoms in common are nausea, vomiting, inflammation and abdominal pain.

I think it's great that these diseases have finally come out of the bathroom and into the light. Twenty years ago when I was diagnosed with Crohn's Disease, I had never even heard the word before. Many people back then and for years before, suffered in silence, embarrassed to speak to their doctors, or anyone for that matter, about their washroom habits. It was only when the disease progressed to require hospitalization or surgery that it was spoken of, and a diagnosis made.

We've come a long way baby!

Today there are tests such as colonoscopies, blood tests, barium tests, X-rays, MRI's and CAT scans that are done when symptoms arise. There are new treatments that work better, with less negative side effects.

There are also associations like the Crohn's and Colitis Foundations of Canada (CCFC), America (CCFA) and other countries around the world that help patients everyday. These foundations and their members put on campaigns such as "The Heel-And-Wheel-Athon" and "The Annual M&M Meats BBQ", to help raise awareness and funds for research to find cures.

Patients can also get involved with the support groups foundations offer, to find and connect with others that cope with the same things, and have the same challenges in common. Groups are so important and positive, in that patients can get together, and know that they are not alone.

Having a "World IBD Week" denotes the strides in awareness that have been made, and the internet has proven to be a major push in the right direction for this movement. Information about all of these diseases are at anyone's fingertips, with the click of a mouse. Social media sites such as Twitter, Facebook, MySpace and others all have groups specifically for patients, their families and friends.

So if you are curious about these diseases, google them. If you think you may have one of them, see your Doctor. And if you know someone that has an IBD, give them a hug! I know they will appreciate it!

Saturday, May 15, 2010

Gut Instincts (cont)

Back to "Gut Instincts":

After getting nowhere with that doctor, my family decided to switch to a new family doctor, and I was ready for a real diagnosis. No jokes, just facts. I just wanted to be, and feel normal again.

I was losing weight rapidly, was nauseous all the time, had diarrhea multiple times a day, and the pain was getting worse. I was told to quit my dancing lessons and gymnastics by my old doctor. I wasn't happy about it, but I just didn't have the energy anymore. I was also having such bad joint pain that I was finding it all very difficult anyway.

I left my first appointment with the new doctor, had some blood drawn and x-rays and was hoping that he would be the answer to my prayers. But he didn't help either, he thought that I was a hypochondriac, or that my symptoms were just psychosomatic. And because he was an M.D. and didn't think anything was wrong with me, my friends and family decided that he was probably right. That didn't sit very well with me, they treated me like I was crazy and just making it all up.

High School was ending, and I was working two jobs. I was getting worse and kept going back to see the new doctor over and over again, but nothing changed. At one visit my doctor was away so I saw one of his partners instead. I thought maybe he would have some new ideas. Oh, he had ideas alright, he told me all I really needed was a good shrink! and he gave me a script for some antacid. Really helpful, not.

When my doctor got back, I went to see him again, and told him that I really believed that there was something inside of me that wasn't supposed to be there. I told him that I wanted to go and get an Anatomy book, cut myself open, and remove the object of my pain. He looked at me like I was nuts and just sent me for more blood tests which came back negative for everything.

Because of my weight loss, anorexia was brought up. I knew that wasn't the problem. I swore up and down that I wanted to eat, was hungry, but it just hurt too much every time I ingested anything.

I started smoking pot to help with the pain, especially at bedtime because the pain would wake me up so many times during the night, that on top of being drained, and feeling weak from not eating, I was exhausted from being up and down all night.

I graduated from high school, got a new job with an Engineering firm and quit the other two. The company was owned by a friend's Dad and I loved it there. I should have been healthy, happy and enjoying my new life.

But with friends, my boyfriend, my family and my doctor thinking that I was faking my pain, I started to doubt myself at times and wondered if I was just imagining it all, or maybe not taking care of myself properly. That was really hard, thinking that I was doing something to cause this all to happen to me. I decided to make some changes to see if they would help.

I started running again, that had always been one of my favorite ways to get exercise. I started to make healthy lunches (and making myself eat them) to bring to work with me instead of going to the fast food places with co-workers. After a couple of months of implementing these changes I was feeling worse. The pain was increasing and I was literally spending hours a day in the bathroom with diarrhea.

This was a really hard and lonely time for me. No one wanted to hear about my pain and other symptoms anymore. Some friends stopped being there for me. I would sit cross-legged on my bedroom floor and meditate on the pain and it's location. The worst pain was in my lower back, just above my belly button and in my lower pelvis. I had been doing this for months and I really could feel like there was a foreign object inside me that needed to be removed. I knew that I wasn't crazy or imagining it. I knew that there was something really wrong and I wasn't going to stop bugging my doctor until we had answers. I was going to listen to my "Gut Instincts"!

I decided that I just wouldn't talk about it anymore, and no matter how I was feeling I would pretend that I felt great. It was very stressful, and I would cry myself to sleep some nights praying for God to either heal me or let me die so that I wouldn't have to suffer anymore.

Friday, May 14, 2010

Gut Instincts

Have you ever felt or knew that something was wrong with you, but you just couldn't put your finger on what it was?
That started to happen to me when I was grade 10. I was a relatively healthy person until then, I was active in gymnastics, dancing lessons, school sports and theatre. But one morning I got up early for a gymnastics practice at school and skipped breakfast.
I was starving during my second period class so I ate an orange, and by third period I was in the nurse's room with the worst abdominal pain I had ever had. She told me it was because I ate the orange on an empty stomach, but who doesn't eat fruit for breakfast? It didn't make sense to me.
The pain never went away from that day on, and I was a frequent visitor at my family doctors office.
He thought the pain was ovulation. Everyday? I didn't think so.
I was also experiencing joint pain that I had never had before, especially in my knees. Once when I went back and complained about it, he told me it was from tap dancing.
I said "I have been tap dancing for years and never had this problem before", he said "Tap dancing can be very, very dangerous you know, you could fall into the sink!". Funny, but not the help I was looking for.

I just kept getting sicker and sicker, and every fiber of my being told me that there was something serious going on, but help wasn't going to come from him.