You Might Be a Crohnie

If you're up all night with your mind racing with strange things like, "why do we park in driveways and drive on parkways"....
you might be a Crohnie

Humira: Day 136

Humira has been an interesting adventure to say the least.
Oh, don't get me wrong, it's still doing the job, but I've had some weird "reactions" these past few injections and other IBD'ers I've talked with say it's strange as well.
So, let's back up...

I started Humira January 2 of this year without any fan fare, all good, pretty boring. Everything was pretty easy and no problems. Since then, I've had what I would call "reactions" after injecting.
Now, I don't know IF it's related to the Humira, but it's too much of a coincidence.
I do my injections every two weeks and I alternate between my left and right side of my abdomen.
Back in April, on back to back injections, I had Rigor attacks. A sudden, and I mean sudden, feeling of cold and chills, uncontrollable shaking and fever. The difference for me though, is I'll keep up with the shaking until I throw up and it slowly eases. It takes several throwing up episodes and hours later, it's gone.
What I'm left with though, is massive joint pain in my knees, hips, neck and jaw from the shaking.
It takes several days to fully recover.
My last two injections I have put in my thigh and no reaction, so I'm wondering if injecting into my abdomen is causing a reaction with my Crohn's. The throwing up makes me believe its causing a "blockage" type scenario.
I usually get Rigor attacks one a year or more before these last episodes. Now I've had two in as many months...weird to say the least. The only common factor is the Humira.
I have an appointment with my gastro soon, I'll talk with her more about it and hopefully I'm not the only one. Wouldn't be the first time.

But hey... it's always nice to be first at something....right?!

You Might Be a Crohnie

If no one knows by looking at you, you're flaring, in pain and really have to go to the bathroom...
you might be a Crohnie

Chronic and Invisible Illness Awareness

Please see this video from Jade Russell she put together featuring a wide variety of us that have a chronic and invisible disability. Supporting and bringing awareness to the large and every expanding community.

"I have a voice, I am visible"

https://www.youtube.com/watch?v=8kMRhQ-UFOQ&feature=youtu.be

Thanks Jade for your hard work

2020 Crohns and Colitis Canada Gutsy Walk

In the next hour, someone in Canada will be diagnosed with Crohn’s disease or ulcerative colitis. Then someone else in the hour after that. And someone else in the hour after that. Canada has some of the highest rates of Crohn’s and colitis in the world.

These diseases cause the body to attack its own digestive tract, leading to intense abdominal pain, nausea, exhaustion, and frequent, urgent trips to the washroom. We still don’t know exactly what causes Crohn’s or colitis, and that makes the diseases difficult to treat.

Taking on the challenges of Crohn’s or colitis takes courage, community, and you. 

On Sunday, August 23, 2020, I’ll be taking part in the 25^th annual Gutsy Walk so that Crohn’s and Colitis Canada can fund the most promising research into these diseases, and continue to offer essential patient support programs. I’m here to ask you to please donate to my walk and help me reach my fundraising goal.

Your contribution will help uncover better treatments, help people with Crohn’s or colitis live fuller lives, and ultimately lead us to cures.

Please visit my personal fundraising page to make your donation to my virtual walk: 

https://crohnsandcolitiscanada.akaraisin.com/GutsyWalk2020/vernonlaine

Thank you for supporting me, and everyone who’s taking on Crohn’s disease or ulcerative colitis.

You Might Be a Crohnie

If you look at a small roll of 1-ply toilet paper and giggle...
you might be a Crohnie

IBD and Mental Health

It's never easy having an illness of any kind, let alone an illness you have no idea how you got, nor can you cure it.

It's bad enough to cope day to day, no, hour by hour with IBD (inflammatory bowel disease) because you just never know when it's going to raise it's ugly head.

So, with the pain and suffering of IBD, add anxiety and depression.  No one sees what you're going through battling Crohn's and Colitis because it's inside of you, but so is your mental health.
For many years now, when I talk to people who are newly diagnosed, I stress to ask their doctors to have their mental health checked as well. At least have your doctor give you information on someone you can call or contact in case you need it. You may never use it, but you have it just in case. I find now that social media is a great tool. There's nothing better than to be able to connect with others that can relate to what you're going through, physically and mentally.
I've come along way in 32 crohns years....

When I was diagnosed in 1988, I had never heard of Crohn's disease or IBD and neither had any of my friends or family. There was no internet to "google", I physically went to the local library to research the disease with the small amount of books available on the disease. To say it was discouraging was an understatement. No help there.
It was a year or two later that things turned for the worse after my second consecutive bowel resection surgery when my doctor told me to prepare for the possibility I could wake up from surgery with a ostomy and a bag attached. I was in my 20's and the thought of have a bag just was not even in my plans. I became very depressed and the doctor could see that, so he had someone come talk to me in hospital, that had Crohn's AND had an ostomy. It helped....a little.

I never considered myself an extrovert but also not a huge introvert either, but as the years went on, I definitely turned in on myself and stayed close to home. The pain and embarrassment of the disease caused me to shut people out and push others away. No one would understand what I was going through anyway, so why bother talking to anyone. I guess it was at this point that you find out who your friends are. The ones that will stick with you knowing somethings gong on.

Eventually, the pain, embarrassment, anxiety, depression and the like, got to me and I tried to commit suicide. I took a handful of Tylenol 3's and laid on my couch. It got to the point, I thought, I couldn't take it anymore. I had got it in my head that I was never going to get better, I was going to look the way I did for the rest of my life (skin and bone) and no one will ever want to be with me.  I was going to be alone the rest of my life. I remember taking the pills with a rum and Coke and then starting to feel relaxed. Soon after I started to feel light headed and sick to my stomach. I started to feel sick I started to get scared. Did I really want to do this? I didnt like this feeling, not at all, so I went to the bathroom and stuck my fingers down my throat to bring up what was left in my stomach. I didnt feel very well for a few hours afterwards, but I slept it off and was "fine".
I kept it to myself, for years, but in the end, glad I didnt go through with it. It goes to show what some of us go through silently and there should be mental assessments done along with regular GI appointments.

Over the many, many years I have had IBD, I learned to turn it around and make fun of it and laugh at the strange, weird, disgusting, terrifying, depressing, anxiousness we go through on a daily basis. You have to.  It's where my "You Know You're a Crohnie When..." came from.
In the end, it turns out I was wrong. I gained weight and I found someone who actually wanted to be with me. I told her on our first date about my illness. We will have been married 18 years this September and have two boys. Life's good but I still have bad days that my mind wanders to "the dark side". We all get like that. It's what you do with it that matters.

There are so many good people and organizations now online via social media that can help or just listen. I have people contact me now asking for help, guidance or just to listen  to them and I am happy to do what I can. I don't profess to have all the answers, but we all need help at some point.

I've been there... and back.

Quarantine Part Two

You'd think with all this time at home, there would be lots of time to make blog posts, but we've been spending time with each other.
Our 2 week quarantine was up last week, but we're still staying home, mostly, so no one risks bringing it home. We only go out for groceries, or deliver groceries, and that's it. My wife has been doing all the grocery shopping so not to put myself at risk. We are very careful still, even to the point of wiping down groceries before bringing them into the house.
It's amazing what you can get done around the house inside and out, when you dont need to go out.
It's still a little cold out, but I started prepping our veggie garden the other day and planted seeds in my little mini greenhouses. Luckily, my health hasnt turned for the worse, other than the pesky peri anal abscess that doesnt seem to want to go away. But, I know how to deal with it, as I have been since 1990 when my first peri anal abscess appeared.
It's interesting how quarantine in 2020 is looking more and more what life was like back in the 1970's. Take away all the devices and internet and you have the 1970's. We've reverted back to a time when you ate at home, around the dinner table... together. The board games and puzzles are coming out of the closets, basements or attics to play together... as a family. More importantly, we're talking more. Using the telephone to talk to people, no texting.
People are re connecting with family and friends.  People arent worrying about "me" as much and focusing on others.
The question now is, will people remain focusing on others, or will they revert back to "me" attitude? I guess we'll find out when all this is over.

In the meantime, cough or sneeze into your arm, keep social distancing and for God's sake
WASH YOUR HANDS!!

Quarantine

We are in Day 9 of a 14 day self isolation quarantine because we were in Orlando, Florida visiting DisneyWorld.
I'd like to point out that quarantine is not that hard, for all of those people whining they cant go out.
Think of the consequences. This virus will never go away if people go out and socialize and not keep distance from others.  I akin it to the old 1980's Faberge shampoo commercial, IF YOU DON'T quarantine...

You infect two friends (2) and they infect two friends (4) and they infect two friends (8), and so on (16), and so on (32), and so on (64)... well, you get the picture. You can see just how fast this virus can spread.

In the 9 days so far, we have done alot of things around the house. We've cleaned out the garage, cleaned gutters, power washed all the cement outside, washed the cars, thoroughly cleaned out and disinfected the inside of the cars, played games, puzzles, watched movies, caught up on tv shows, etc.
I still have to clean one more room, but I have alot of time still.  The point is, don't complain, get things done. Read a book... WRITE a book, whatever it takes.

I'd like to take this time to thank the doctors, nurses and all essential service workers out there on the front line.
I'd also like to thank all those friends and family that have come to our need with groceries, etc. When all this is over, I have alot of lunches, dinners or coffee "dates" to plan.
Everyone needs to do their part at this time. Cover your mouth and nose, keep social distance, self quarantine if needed (or even not), but most importantly, WASH YOUR HANDS !!!

And finally, to all those out there NOT heeding warnings, you don't think you're going to get it... you don't know that. Everyone is susceptible. You could still carry it and pass it without having symptoms. Listen to your Health Officers or Surgeon Generals, and not those who have no idea or any knowledge of viruses or pandemics. Serious times require serious measures.

I am immune compromised and even though I have no symptoms, I am in quarantine with my family.  To be honest, I will still probably stay at home because it's safer. I don't trust others out there in the world. I don't trust they will follow the rules. I am very anxious about my life right now and that of my family.  PLEASE, follow what the professionals are telling you. Certain leaders... well just one actually, *cough* Trump, is making everything worse and I feel for my US family and friends.

Please take a look at links below for COVID 19:

Canada - Health Canada
USA - CDC
UK - NHS

Also, for us IBD'ers, go to your country's Crohn's and Colitis sites.

Canada - Crohns and Colitis Canada
USA - Crohns Colitis Foundation
UK - Crohns and Colitis UK

My final thought on this matter.
To all those out there around the world who think COVID 19 is a hoax?   

Go "F" yourself !!

You Might Be a Crohnie

If you stop counting your bowel movements after 20 in a 12 hour period
... you might be a Crohnie