You Might Be A Crohnie

If you would rather stand that sit down in one of those hard, pain inducing, tear jerking, torture chambers for your ass at your doctor's office....
you might be a Crohnie

You Might Be A Crohnie

If you know the difference between fistulating and nonfistulating perianal disease...
you might be a Crohnie


This is me today and the past few days...not been a pleasant or comfortable this week 😭

IBD Survey

The Gastrointestinal Society, badgut.org , is conducting a survey called,

IBD Patients: What's Missing In Your Care?

They are looking for IBD patients of all forms and their experiences and opinions to help shape future programming for patients

Please click here https://badgut.org/ibd-survey-2019/ and help

Thanks!!

You Might Be A Crohnie...

If you can suffer from Crohn's disease, peri anal disease, kidney stones, psoriasis, fatigue, dehydration, malnutrition, and depression and STILL get up everyday looking as fresh as a daisy
...you might be a Crohnie

Crohn's Disease in the Workplace

I am happy to have helped with this article from Antidote along with Matt Strutt from Give Crohn's a Slap From Me and Natalie Hayden from Light's, Camera, Crohn's

https://www.antidote.me/crohns-disease-in-the-workplace

Thanks to Nancy Ryerson from Antidote for the article and the ease of communication.

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My Date With The Flexible Camera

I had my annual colonoscopy last week and looking back, it's almost like having a first date.
It's not like a normal colonoscopy because, well, I don't have much colon left...about 6 inches, so it's more of a flexible sigmoidoscopy with sedation.

My "date" was on a Wednesday, so I started to prep on the Monday prior by starting to fast. I had breakfast that morning but then nothing except water or broth for the rest of the time. Drastic? Maybe, but I wanted to look good.... my colon that is. I found after all these years, not eating is easier than taking the disgusting colon prep.  The day before, I take two Dulcolax, just in case there's anything left cuz by now, it's just water coming out.

My test isn't until the afternoon, so I have what I'm going to wear laid out. I'm going for minimalism today, t-shirt and track pants, mainly so I don't have a lot to take off when I get there. No accessories except for my drivers license (because it has my medical number on it) and one ski glove. Ski glove, you might ask? Yes. I normally have the IV put into my left hand, so I heat my hand before heading out, then slide the glove on.  Keeps my veins nice and big.
After getting dressed, I now just wait for my ride. I can't drive because of the sedation, conscience sedation. Not sure why they call it that, cuz I never remember anything until the next day.

I get to the outpatient clinic, check in and usually only wait less than 5 minutes. It's like I've arrived at the restaurant and waiting for my table. The nurse calls my name and I head to my chair where she goes over my name, birth date and why I'm there. She tells me to take everything off except my socks and shoes....moving a little fast for my liking LOL...and slip into the little blue number she's laid out for me.  She said she'd be back with my IV, like I've just made a drink order, and covered my hands in a warm blanket. There's 3 other people sitting waiting, all of us dressed the same, but I always find it amusing. Sitting in the big comfy recliners, little blue "dress", socks and shoes and holding your belongings in a cloth bag. For me though, I'm all that PLUS my big black ski glove on the left hand...sexy! The nurse comes back with my IV "order" and asks me my name, birth date again and then sits down to do my IV....in my right hand! She explained they needed my right hand because I would be laying on my left side. Oh well, at least my left hand veins were poppin' ! No worries, at least she did a good job and the IV slid right in no problem, now it was just sitting and waiting for my name to be called. I never bring my phone or anything just in case someone makes off with it.  I never expect to get in on time. After all these years, I don't think I've ever had a test that was on time, so why fret over it. It was about 30-35 minutes later another nurse came and called my name and verified my name and birth date...again. We walked down to the room where my Dr. was sitting reviewing her notes on the computer about me. There were three other nurses in the room prepping everything while I undid my little blue gown and laid on the table, had electrodes stuck to my body, finger pulse attached, all the while "chit-chatting" with my Dr.  I've had my gastroenterologist for 30 years so the conversations are always light hearted, but this time she was discussing how I will need to switch from a biologic (Remicade, Infliximab) to a biosimilar (Inflectra, Renflexis) because the Government "said so". It's a touchy subject for me and one of the nurses knew it because my heart rate went up talking about it.  After all the chit chat, the Dr was ready for my meds. I always ask for lots, because I dont want to remember anything. She started injecting the first one...there are 3... and tells me to relax and not to fight it. Sounds like she was slipping me something in my drink, but she knows me too well, because I always try to keep my eyes open as much as I can, even to the point of opening them reeeeeeally wide to stop them from closing LOL.

The next thing I remember.... I'm at home. I don't remember anything. My wife picked me up and she said I was already dressed and sitting in the wheelchair waiting for her. I don't remember getting dressed. Apparently the nurse discussed paperwork after the "date" but I have no idea what about. She took a nice video of me after she got me into the car where, I think, I was pretending to be stripper putting my glove on and off while humming. I don't remember the drive home, getting into my house, talking with my kids, going to bed......nothing. Apparently, though, it was quite humorous. Like I had too many drinks.  Have look and listen.....

Last year my wife told me that I was pretending to be driving a race car while she was wheeling me out of the clinic, this year I was a stripper.

Still not sure what the camera saw inside, hopefully its all good, but we'll do it all again next year.

Wonder what I'll be next time....

Crohn's Tips

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

https://www.webmd.com/ibd-crohns-disease/crohns-disease/treat-18/live/crohns-everyday-tips

Thanks to Rachel Ellis for writing the piece.

Biologics Articles

Here are two articles about Biologics which myself and others are featured at HealthCentral
Thanks to Erin Boyle for writing the articles.

https://www.healthcentral.com/article/signs-its-time-to-switch-your-biologic

https://www.healthcentral.com/article/infusions-with-biologics-tips-to-make-crohns-treatments-easier

"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

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"