Thursday, September 26, 2019

Crohn's Tips

Here's another article I contributed to for WebMD about everyday tips when living with Crohn's Disease.

Thanks to Rachel Ellis for writing the piece.

Tuesday, September 17, 2019

"Crohn's Disease Ate My Colon" - My story (Part Four)

Physically and Emotionally

Everyone talks about Crohn's Disease and how it affects your "gut health", I mean, there's a hell of a lot of things going on in there all at once. But the disease is much, much more than that, physically and emotionally as well.

When I was finally diagnosed, I already had symptoms for months. Pain, weight loss and diarrhea were the most obvious to everyone around me. I mean, I couldn't really hide it. It's hard to disguise running to the toilet every few minutes or being curled up in the fetal position on the floor or your clothes hanging off you like I was 10 and wearing my dads clothes. I learned fast that not eating helped take some of the pain away, but not always, and not eating forced the dramatic weight loss. Physically I looked like I was from a concentration camp, skin and bones. Ribs were showing, my gut was concave and arms and legs had no muscle.
The worst came when I was 'confronted' on the street by a perfect stranger. Remember how everyone says, 'don't judge a book by it's cover'... well this guy had never heard it before. He asked me...and I quote, (because I will never ever forget it) ' Do you have AIDS? '
I remember being stunned by the question because I had never thought about it before, but there it was. I responded by saying no of course and that I have Crohn's, he had no idea what that was and I wasn't about to explain it to him.

I was in my 20's and now weigh a mere 110 lbs (50 kg, 8 stone)

I knew I was skinny, I could see it like everyone else but that day burned into my brain. It's this day I attribute to where I became more of an introvert (turning in on oneself). Not so much "shy" but I purposely started to stay home, avoided going out on purpose, didn't want to see anyone. I never was a party person but had lots of friends, a couple of close ones and a girlfriend. It's amazing what having an illness will do to your social life when no one understands, or wants to understand. It takes a toll on your life physically and mentally. I was with my girlfriend at the time for 3 years and she was there in the beginning when I started to get sick, but after my first two back to back surgeries, she dumped me when I got home from hospital. She said SHE couldn't handle me being sick, only reaffirming what I was thinking, who's going to want me in this condition? I mean, who could blame her, I went from having a toned athletic body (from figure skating and soccer) to skin and bone in about a year. I was still "me" but... not.
Everything starts running through your mind, including "why me?"  What the F did I do in my short life at the time, to warrant such a disease and my now new life? Still does sometimes. Depression goes hand in hand with this disease, and any disease for that matter. No one understood what I was dealing with and now I didn't want to talk about it... with anyone. Even if I wanted to, who was I to turn to? No one I knew had ever heard of Crohn's disease. There was no social media at the time, so I needed to go to the library (it's a place where they have books, LOL) and start researching. But even then, there was not much. No other people, no information, no job, no money, nothing. Talk about isolated.

In the meantime, not only am I dealing with regular symptoms from Crohn's but also the other complications like, kidney stones, fistula's, fissure's, peri anal disease, fatigue, dehydration, etc, PLUS malnutrition. I now know, but I didn't at the time, I was becoming depressed from all that was happening and how everything was collapsing around me. And then, in 1991, I had had enough. I tried to commit suicide.

I was home alone, things were not going well for me personally as well as with my Crohn's, I made myself a rum and coke, grabbed my bottle of Tylenol 3's and laid down on the couch. I remember taking 3 at a time, I don't remember how many I took in the end, but when I started to feel "funny" in the head and light headed, I started to freak out and got scared. I remember calling a Help Line to talk with someone (when I probably should have called 911) and I didn't want to call family or friends, not that I had many friends left. Let me tell you, the "help" line was not much help the woman on the other end of the phone eventually told me that she "had to go now, it was the end of her shift". I remember thinking, "are you fucking kidding me?", but in the end, it turned out to be okay because right after getting off the phone, I started to feel sick and ended up throwing up.

Today, I'm glad it didn't work. Today, I have a good life, married, two kids, a home, a job, etc.
I still have days where, mentally, I need a rest. Physically, I've gained all the weight back (thanks to Remicade), I probably could lose a few pounds now LOL! I still have days I feel pain, discomfort and other complications but I deal with it and move on. I don't have time to worry or dwell about it but I rest when my body says so and when my brain says so.

We all have those days, we all know how you feel and we are all here for anyone who needs help, even just to lend an ear, but we would never say, "sorry, it's the end of my shift, I have to go".

Coming up....Part 5

Sunday, September 1, 2019

Crohnie Quote of the Day

"When a person with IBD says they are having a "shitty" day, they could mean it figuratively AND literally at the same time"