A Different Kind of Christmas

 2020 has made Christmas different this year, for me and for everyone. 

Personally, 2020 will be remembered for my health. Not that it was bad, but a lot happened as far as trying to "fix" me. My colonoscopy results caused my GI to contact my surgeon to take a look. I needed to have another one months later and she was concerned enough to schedule surgery and finally give me the ostomy I was trying to avoid for my 32 years of Crohns. I was given a temporary ileostomy in September as well as peri anal abscess's removed in preparation for a permanent ostomy with proctectomy. That surgery was done in November after complications from the first surgery. I was in hospital for the month of November and am slowly recovering at home.

Christmas this year was different, but in a good way. For the first time in 32 years, I was able to actually enjoy Christmas dinner. I had a proper meal this year, I tried everything. I didn't have to pick through it. And you know what? I had no pain or discomfort. None.  I have not had that feeling since I was 19 years old, Christmas of 1987. I'm 52 now. There were even years I just plain missed Christmas all together.

So with all the bad things happening in 2020, I will remember it for what I COULD do and not what I couldn't. My surgeon, Dr. Elena Vikis, a colorectal surgeon, was fantastic and a miracle worker. It took 6 hours, but she was able to separate what was left of my small bowel and lengthen it, giving me more to attach to the ostomy. Millimeter by millimeter, she separated it from the mass of bowel and scar tissue. I could eat my food again with no pain. I'm not afraid to eat anymore. Having an ostomy, named "Squirt", gave me my life back and yes, I think to myself, "why didn't I do this sooner?" I cant thank my surgeon and her team enough. It's still a long road to fully recover (the Barbie butt is taking longer than I expected), but I'm on the right road.

Squirt gave me my life back.

Twas the Night Before a Crohnie Christmas

 Every year for the past 15 years, I read "Twas the night before Christmas" to my kids on Christmas eve before they go to bed....

Here's the Crohn's Disease version 

***warning: language***


‘Twas the night before a Crohnie Christmas, quiet as a mouse
Trying to get to the bathroom without disturbing the spouse.
The TP was hung by the toilet with care,
In hopes that I don’t run out whilst I sat there.

The children were nestled all snug in their beds,
I hope I’m not too loud lest I wake their sleepy heads.
And mamma in her ‘kerchief, and I in my cap,
But I had to get up, I needed to crap.

When out on the lawn there arose such a clatter,
I sprang from my throne to see what was the matter.
Away to the window I flew like a flash,
Still pulling up my underwear to cover my ass.

I live on the coast so there wasn’t any snow
Just dreary wet grass that I can see below.
When, what to my very tired eyes should appear,
But a miniature sleigh, and eight tiny reindeer.

A decrepit old driver, not lively or quick,
I knew in a moment it must be St Nick.
He didn’t look well, he must be inflamed,
But he whistled, and shouted, and called his reindeer by name!

"Now Crohns! Now, Colitis! Now, Pain and Grouch!
On, Abscess! On, Fistula! On, Ostomy and J-Pouch!
To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!"

And then, in an instant, I heard on the roof,
The scratching and farting of that big, silly oaf.
As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his toe,
He looked very fatigued, he moved really slow.
A bundle of toys he had flung on my chair,
He looked in pain, it must be a flare.

His eyes, how they squinted! His face quite scary!
He let out a fart, not pleasant or airey!
His droll little mouth was drawn up like a bow,
I was getting prepared, he was gonna let another one go.

The bags under his eyes, I saw his fatigue
That comes from living with this dam Crohn's Disease.
He had a broad face, (must be the Prednisone),
If he didn’t hurry, he would soon need the throne.

He was chubby and plump, a right smelly old elf,
And I laughed when I saw him, in spite of myself!
The moon face, mood swings and twitch of the head,
Soon gave me to know it was for sure the Pred.

He spoke not a word, but went straight to the bathroom,
And filled my toilet with a splat! and a KABOOM!
And laying his fingers, covering his nose,
Giving a nod, up the chimney he rose!

He sprang to his sleigh, he now weighed so much less,
He thanked me and apologized for the big mess.
But when I heard him exclaim, I realized he knew my plight,
“I have Crohn’s Disease too, it’s going to be one HELL of a night!!”

Merry Christmas everyone, hopefully it is disease-free. At least for one day.

All the best for a happy and healthy 2021 !!!

-Vern

Ostomy Surgery - Take Two

 It's been a hard few months, which is why I haven't posted since September and I apologize for that.

So, that last time I posted, I had had surgery for removal of a couple of peri anal abscesses and a temporary loop ostomy done. A lot has happened since then.

I was having too much output from my ostomy and I was becoming very weak, throwing up, dizzy and light headed. I requested my family doctor for some blood work because obviously something was not right. I got it done on the Friday before Halloween in the afternoon and by Saturday morning, my doctor called and told me to get to the hospital ASAP as I was in acute renal failure and there was a chance my kidneys could shut down. It was a scary thought and strange as I was not having any symptoms for renal failure, that I knew of anyway. No kidney pain, I was still urinating, clear flow, no fever or chills, I was drinking lots, nothing. My Creatinine levels after the blood work was 1068, normal is 45-110 and my GFR was 5, normal is 60-100. I had my wife call an ambulance. More bloodwork was done in the ER and my levels dropped more. I was so tired and worn out, I could barely move.

Two days later, my surgeon had me transferred to her hospital to tackle my kidneys and then have my final surgeries, make my ostomy permanent as well as a proctectomy (Barbie butt). It took about 10 days for my kidneys to recover to a point the doctors were happy enough for the surgery to go ahead. A lot of water and IV fluids. My surgery was set for November 13..... Friday the 13th.

Surgery went well, although it was over 6 hours. She was able to release some matted small bowel that was secured to my pelvic wall with scar tissue for previous surgeries. This gave me more length to help the ostomy. My rectum was removed and she found it was full of a pus like material most likely because of 30 years with peri anal disease. She did mention to me that looking through the small intestine I have left, she only found 2 inches of diseased bowel, so some good news. It was a very long surgery and was given 6 pints of blood, which I don't think I have ever had that much ever with all my surgeries. The ostomy was moved from the left side (temporary loop) to the right side. I have more scars added to my collection now with the temporary ostomy removed, vertical scar through my belly button beside my old scar and numerous laparoscopic scars.

I needed to stay in recovery for 3 days because of low blood pressure. They moved me to the HICU after 24 hours and remained there another couple of days before moving me back up to the ward. The hospital allowed my wife come visit me while in recovery which was very nice. With COVID restrictions, visitors are not allowed and she needed permission to visit. For some reason, I wasn't given an NG tube so of course after a couple of days I was throwing up bile...a lot of it. Back up in the ward, the dreaded NG tube had to be inserted. I don't normally have good experiences with the NG being inserted after surgery, but they gave me a smaller more flexible and it went in just fine, no problem, but still uncomfortable in my throat.

Slowly, and I mean slowly, I started to recover. Its taken longer than I expected but the proctectomy is taking forever to heal. Twenty seven days in hospital for this surgery and as of today, 19 days recovering at home. Every day is frustrating with one thing or another, whether that be my butt or the bag leaks. The flange leaks on either side with belly button on one side and an old scar on the other, very challenging. Another challenge is my kidneys. I have blood work once a week and my GFR and Creatinine have dropped, even though I drink a ton of water....apparently not enough. It's gone up in the right direction lately but the doctors are monitoring it carefully. I don't want to go back to before.

It's been a long 3 months so far, including my first surgery back in September, and I hope it's not another 3 months in recovery. Fingers crossed for a complication-free recovery.

Surgery Update

 After surgery and a little complication, I'm finally out of hospital, but at least I'm home now.

Surgery went well, so now I have a temporary ileostomy. We were going to do a permanent ileostomy and proctectomy but with active peri anal disease going on at the time, it was decided to drain and pack multiple abscesses and have a temporary loop ostomy. The proctectomy and permanent ostomy will be in another 4-6 months to make sure the fissures, fistulas and abscesses are gone. That's the plan anyway.

I'd like to thank all the doctors and nurses at the Royal Columbian Hospital for taking good care of me while inside.

It's taking some getting use to having a bag now, physically and mentally. I know it has/had to be done, but I realized that this is the final step in my long journey, or battle you might say, in fighting this disease. There is no other way to go. I have had Crohn's for 32 years now and 30 of those years dealing with peri anal disease. I had learned different techniques to mange the multiple fistula's and abscesses and they finally got the best of me. Now I wait to see if the re routing of my bowel will help ease the peri anal disease, then I can get the proctectomy and permanent ileostomy.

This will be my NEW "normal" and after all these years, I'll be starting all over again.

So, we turn yet another page and start a new chapter in my book of Life.

300,000 Views !!

 Noticed this morning that my blog has reached over 300,000 views!!

Thanks to everyone who has come by. Hopefully I was able to help in some way, even it was just to have a giggle. What started out as a diary for me has blossomed to what it is today, a place for everyone to either learn something new or for just to follow along on my long journey.

I cannot express enough my gratitude to all who have read my blog, thank you!!

On a side note, I am still awaiting a hospital bed for my surgeries. It's a weird feeling. I have never, in all my Crohn's years, had to walk in the front door of a hospital for surgery. For all my surgeries, I have already been in hospital through the ER and admitted through them. The wait is bothering me, but mentally, not physically. The longer I wait, the more I think about it. It sucks. I know it needs to be done, but try telling that to my head.

The wait continues....

Surgery Time !!

 Had my colonoscopy this morning by the colorectal surgeon. Everything went fine, but as usual, I don't remember leaving the hospital let alone talk with anyone. With new COVID measures in place, after my procedure, I was wheeled out of the hospital by a porter, so I don't remember talking with the nurses or the surgeon. Normally my wife is there and she can listen to the doctors and nurses with what happened and if anything was discovered.

Fast forward 4 hours later and I get a call from another hospital telling me they have my bed ready. Ummmm, what??  I mentioned that I just had my procedure and cant get to the hospital today, plus the fact I had no idea WHAT I needed to go for. They didnt know either, other than they were to secure a bed for me.  A few minutes later, I got a call from the surgeon.

She asked me if I remembered our conversation during the procedure. I told her that I dont even remember coming home. She laughed and said it is always strange to her because I was very lucid and was talking with her. Nope...dont remember.  Anyway, she couldnt get the scope past my small intestine because of inflammation and stricturing. Keep in mind, that I only have a rectum which my small intestine is attached, so that's not very far in. She mentioned because I "looked good" compared to when she saw me last, that she recommends the surgery sooner than later because I would tolerate the surgery better. Nope...dont remember that either.  She wants to get me into a bed even though the surgery probably wont be for a week or so. It's either that, or it wont be until the new year sometime. She was going to see if she can get me into the hospital by Monday or Tuesday so I had time to wrap my head around it because it was happening so fast. I agreed.

Now, of course, my head is spinning. So many things to do to prep. I have bills to pay over the next few weeks....done. Need to get my hospital bag updated and ready....done. I'm sure there's more I'm forgetting.

Now, if I can just get my HEAD ready for an ileostomy and proctectomy......

Colonoscopy Prep....?

 Everyone has a different approach when it come to the days leading up to a colonoscopy. 

Eat this, but not that. Drink this, but not that. Take this, but not that. Depending on your particular situation. "Normal" people who have "normal" bowels, I actually feel sorry for. They aren't use to restricting foods on a daily basis and I'm sure they feel they are "suffering" with the restrictions.

I laugh.

For IBD'ers, it's a piece of cake...so to speak. For me, I've tried the oral prep AND the enema prep but neither really worked, not sure why. I'm pretty sure it's because my small intestine is attached to my rectum, I barely have any large bowel left. Both types of prep cause me great discomfort. 

Now, I need this colonoscopy leading up to removing my rectum, anus and add an ileostomy and luckily my surgeon is doing the scope so she can look for what she needs to do from the inside. So, this is what I normally do...

Four days before the test I switch to a liquid diet. No food at all. Breakfast is black coffee or tea and jello. Lunch AND dinner is juice, water, black coffee or tea and chicken broth. That's it. In between I'll have some Gatorade. 

Now, you'd think I'd be hungry, but I'm not. With the amount of liquid intake, I "feel" full. I may not actually be full, but as long as I just have the feeling, that's what I need. Plus, I'm use to it. There have been too many times in my crohn's life that I have stopped eating. By the time my test rolls around 4 days later, there's nothing left inside me to interfere with the camera. 

This is what I DO. It may not work for others. The normal prep will probably work for everyone else, but I wanted to say, this is what I do, for me, because the normal prep doesn't work and causes great discomfort. Like we always say, what works for one may not work for another.

Crohn's Humor

 

Gutsy Walk 2020

 There is one more week before the Gutsy Walk  on August 23

I'm ready to go, walking around my neighborhood this year with my FitBit to track my steps. There's still time to support my walk to help with the fight against Crohn's and colitis.

You can support me here:

GutsyWalk2020/vernonlaine

Let's help make IBD (Inflammatory Bowel Disease) a thing of the past !!

Crohnie Quote of the Day

 It's okay NOT to be okay.

You Might Be a Crohnie

If you have a bowel movement every morning at 8 AM, but don't wake up til 9 AM
...you might be a Crohnie

It's in the Bag

32 years of fighting Crohn's disease has lead me to this... I need surgery for a permanent ostomy.

This is probably one of the hardest things to write about for me, it's taken me a couple of weeks to figure out what to say.
I need the surgery because of the peri anal abscesses, fissures and fistula's I have been dealing with for 30 years. I started getting them just 2 years after diagnosis. We have tried every medication attempting to fix these problems as well as deal with flares and pain.
Nothing seems to have worked, even the biologics. Remicade for 8 years and Humira since January.

My GI and I have talked about this surgery for years now, but I have learned to live with these problems most of my life and the thought of major surgery.... again... just didn't appeal to me.
I had an MRI done recently and it showed there is an abscess "collection" deep inside (that I cant feel) that has tripled in size since my previous MRI in 2017. It's not big, only about 2-3 cm, but that, and the fact my GI is concerned about the possibility of hidden cancer, made the decision for me to suck it up and get it done.

I have one of the best colorectal surgeons doing the surgery, so I feel more at ease about it. She has become and expert in the TaTME (Transanal Total Mesorectal Excision) technique and I will come out of the surgery with a permanent ileostomy and no butthole (Barbie butt).  I now have multiple tests to be done including blood work, CT scan and yet another colonoscopy. So, knowing all that, I have no idea WHEN the surgery will be.  Will I be ready? Sure...physically. I've had so many surgeries, another one is just that... another one. Will I be ready mentally? Not so sure. I haven't had major surgery in over 16 years for my 5th bowel resection and that one left me in hospital for 3 weeks. I remember the length of time to recover AFTER I got out of hospital and the thought of doing it all over again, just doesn't sit well...in my head. Every one I have talked to who have had ostomy surgery, say it is the best thing they have done for their Crohn's or Colitis and have no regrets.

And so, the next stage of my Crohn's journey begins.....

You Might Be a Crohnie

If you haven't had a "normal" bowel movement since the 80's
... you might be a Crohnie

.

Crohnie Quote of the Day

"You don't need to be perfect, just be better than you were yesterday"

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2020 WEGO Health Awards

Endorsements are open for this year's WEGO Health Awards, recognizing health advocates for many health issues.  I would appreciate your vote, but there are hundreds of other great advocates to endorse as well.

I am nominated for:

Best in Show: Blog
Best in Show: Facebook
Patient Leader Hero

You can vote directly for me here:
https://www.wegohealth.com/crohnsguy/awards

Thanks and good luck to my fellow nominees!!

You Might Be a Crohnie

If you think the noise from an MRI machine could be used at a Rave...
you might be a Crohnie

Crohn-aversary Month

Back when I was finally diagnosed in 1988, I started going through some major mental health issues that of course I kept inside. Nowadays, I tell people who are newly diagnosed, to seek out help and with the large IBD online community, it's alot easier to find it. I think with COVID 19, seeking out the help is more prevalent than ever. It's easy to say, "just get some help", it's another to actually getting enough guts to get it. I know.
I am not 100% free, but I handle it when I need it, seeking out help from family and online IBD friends who know exactly what I'm going through and I thanks everyone. We've all been through it and we all need help.
I started getting symptoms at the beginning of 1988, which means it been almost 32 and a half years with Crohn's symptoms and disease.
That's 11,844 days.

11,844.

You Might Be a Crohnie

One of my favorites...

If you can actually spell G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.....
you might be a Crohnie

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Crohn's and Colitis Virtual Walk 2020

The Crohn's and Colitis Canada Gutsy Walk was suppose to be today, but COVID19 has changed when and where we will be.

It will now be virtually on August 23, 2020. I'm going to be walking around my neighborhood with my Fitbit.

I have my shirt ready...

I have my mask ready...

I hope everyone will help me raise money for more research and programs for Crohn's and Colitis Canada.

You can donate here...

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

I thank everyone in advance!!

Let's find that cure shall we!!

Crohn's Humor

After months or research and years of experience, I have FINALLY figured out what I can eat and drink without any them causing flares, pain or bloating.....

water and ice cubes

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Crohnie Quote of the Day

I am NOT defined by my illness. 

I am WHO I am because of my illness. 

I am WHERE I am because of it..

.

Step Up For IBD

World IBD Day

Bringing awareness to Crohn's and Colitis around the world

*picture from Crohn's and Colitis Canada

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

COVID-19

COVID-19 has been around now since December 31, 2019 (first reported to WHO) and now has turned into a pandemic, I am shocked at just how stupid people are. No one can honestly say, "I didn't know", unless you just walked out of a cave with no contact with the outside world.

People are STILL coughing and sneezing without covering there mouths or nose.... REALLY?!?!

As someone with a low immune system, I feel like grabbing them and ask them, "are you really THAT f'ing stupid?!!!" 

If you are sick, STAY HOME!! Don't go out, don't go to work, stay away from people. And to those I see coughing and sneezing into your hands and DON'T wash or sanitize your hands, I just want to smack you up side the head!

Alot of people are doing what they are suppose to do, but there are far too many NOT.

Last week, we were in Orlando, Florida experiencing the wonders of Disneyworld. Our hotel, the Coronado Springs Resort had hand sanitizing stations throughout the resort, which was great.

Even Disneyworld  had sanitizing stations throughout the park as well as their security check point and staff members throughout the park had them attached to their belts. I have never seen so many people sanitizing their hands after getting off rides, it was great!!  Even our Disney bus ride to and from the airport made announcements regarding washing your hands and sanitizing after touching surfaces.

BUT, then there are those that were in the parks coughing and sneezing out in the open, not giving a care in the world. Now... this does not mean they have the virus, BUT it's just common courtesy to COUGH OR SNEEZE INTO THE BEND OF YOU ELBOW !!  I watched people while in line to rides coughing into their hands, and then touch the railings. Kids rolling around on the floor and then eat something and then touch railings, etc. I just.... don't.... get it.  What is wrong with people?

While we were there, Disney and Universal Studios closed on the Sunday (15th). We were to be at Universal for the Sunday and Monday, but cut our trip short and missed Universal all together. We were worried about getting home. We live in Canada, but flew out of Seattle and had to drive back from Seattle and cross the border.  With the constant changing rules and regulations we just wanted to get home at this point. Luckily we were flying Alaska Airlines and my brother in law is a pilot for them so we were able to use some passes to fly standby to get home early. No problems at the border either. We, especially me, were happy to be home. I could now breathe a little easier. I didn't want to be stuck in another country with an auto immune disease, with the threat of a pandemic AND my travel insurance would have been void because of it.  

I have never been so happy to see the Canadian flag. 

We are now in self quarantine at home for 14 days. None of us are showing any signs, but better safe than sorry.

Then there is the other end of the spectrum. People hoarding food and basic necessities. Why do you need 9 packages of 36 rolls of toilet paper??? Do you realize that's 324 rolls??  And water. Why do you need to stock up on water??!!  They are not going to shut off the water. I just don't get it. People are panicking, for no reason at all!!  Stores should be putting limits on items so everyone can buy food and necessities. I blame the stores for some of the panic buying.

Practice social distancing and WASH YOUR HANDS !!!!  The spread needs to stop somewhere, why not start the stop with you.

(rant over)

Humira : Day 57

Humira is different than the Remicade simply because I really have nothing to report!
I'm guessing it's working, but wont know for sure until another colonoscopy is done.
I have another MRI next week because one I had done last month was "unclear" regarding my pelvic region, probably to do with my ongoing peri anal fissure/fistula/abscess.
Hopefully this next one will be more clear for them. If it shows it abscessing worse inside, then I will need to see a surgeon to re access. If it gets that far, then I would need to get a colonoscopy regardless. Fingers crossed.
All I now is, since being on Humira, my peri anal disease has not been bad at all. It's definitely better, not 100%, but better.
Well, if I have to get another colonoscopy, my family sure enjoys it. I never remember anything from the conscious sedation, but my family sure gets a good laugh. And as everyone knows with this disease, sometimes you just have to laugh!

You Might Be A Crohnie

If you would rather drive 20 miles to use the toilet instead of using a public one
... you might be a Crohnie

For Sale !!

I have signed on with RedBubble  to sell my art in different forms.
I have also added my blog's logo and one of my favorite sayings,

"I don't LOOK sick...You don't LOOK stupid...LOOKS can be deceiving"

Check everything out here:

artistslaine.redbubble.com

CBD (cannabidiol) Will It Work For You?

I myself don't use, nor have I ever used, CBD or cannabis, before or after my diagnosis. 

Having said that, it does not mean I won't endorse people using it if it works for them.

I may use CBD in the future, who knows, but there is too much evidence to support the use for those of us with chronic illnesses.

Can CBD Offer Hope To Those Living With Crohn's And Colitis?

Let's take a brief look at how CBD could help improve the lives of those living with colitis and Crohn's Disease.

Inflammatory bowel disease (IBD) is an umbrella term that covers a group of conditions and disorders involving chronic inflammation of the gastrointestinal (GI) tract. Crohn's disease is a form of IBD that can impact any part of the GI tract, which may affect the entire thickness of the bowel wall. Colitis is a series of chronic digestive inflammatory diseases that specifically impact the innermost lining of the colon.

IBD and related conditions currently affect an estimated 3 million Americans and millions more throughout the world. With so many people living with these chronic conditions, many often wonder if there are safe and effective companions to traditional treatment to help manage their symptoms.

From gummies to bath bombs, CBD-infused products have swept the nation and emerged as the latest health and wellness trend. Over the past year, CBD has garnered a massive amount of buzz for a host of potential benefits to treat a myriad of symptoms and conditions, but is there any truth to all of the hype?

DidCBDWork.com aims to help answer this question once and for all in an intuitive patient-focused portal. Combining currently available scientific data with anecdotal experiences from people just like you, DidCBDWork.com seeks to be a primary informational database about CBD and its impact on a wide variety of symptoms and conditions.

What Is CBD?

Cannabidiol (CBD) is a non-psychoactive phytocannabinoid, the second most common and one of 113 identified cannabinoids found in the cannabis plant. Cannabinoids are closely related chemical compounds that interact with cannabinoid receptors throughout the body, also known as the endocannabinoid system. Tetrahydrocannabinol (THC) is the most common of these cannabinoids and is most often associated with cannabis for its potent psychoactive effect.

An important distinction between CBD and THC is that each binds with different cannabinoid receptors in varied ways, producing unique physiological effects. Another key difference is that CBD is non-psychoactive, meaning users don't risk intoxication or failing a drug screening.

A wealth of peer-reviewed scientific evidence repeatedly demonstrates that CBD and CBD-based therapies provide patients relief from a wide variety of symptoms and conditions. Several preclinical and clinical trials have shown the efficacy of CBD therapy in treating conditions ranging from ADHD to PTSD, including a variety of inflammatory bowel diseases.

Can CBD Help Those Living With Colitis Or Crohn's?

DidCBDWork.com has a wealth of anecdotal experiences from people all over the world about the impact CBD has had on their inflammatory bowel symptoms. However, they've also compiled an extensive database of peer-reviewed clinical trials and academic research, establishing specifically how CBD can impact these conditions.

For example, researchers from the University of Naples Federico II testing the impact of CBD on a variety of factors, including oxidative stress, to help understand if CBD may be beneficial in treating inflammatory bowel diseases. They found ample evidence that CBD is protective against gastrointestinal inflammation in rat models, warranting additional research and offering promising hope for similar results in preclinical and clinical trials.

Another example is a clinical study from the Medical University of Graz, which found that CBD and other phytocannabinoids help play a direct role in regulating the digestive system, affecting conditions such as colitis and Crohn's. Researchers have found this physiological mechanism to be driven by the CB1 and CB2 endocannabinoid receptors.

Research out of the University of Hertfordshire found that CBD reduces inflammation in the intestines along with lower occurrences of other functional disturbances associated with inflammatory bowel diseases such as colitis and Crohn's. The team concluded that CBD should be utilized as a supplement alongside standard treatment, or additional research should be focused on the development of novel CBD-based drugs.

An analysis from Johannes Gutenberg-University Mainz notes the fairly extensive medical history and research behind the use of cannabinoids for treating a variety of gastrointestinal issues, including pain, diarrhea, and gastroenteritis. After assessing currently available research on the matter, the authors conclude that the endocannabinoid system is a viable therapeutic target for treating gastrointestinal issues, particularly inflammatory conditions.

In addition, a study from the University of California, San Francisco, found that CBD directly impacts the gastrointestinal system in several key ways, including regulating motility and intestinal secretions, as well as reducing overall inflammation and pain in patients. An impressive point to note from the study was that over half of the participants were able to stop taking at least one daily medication for their IBD, thanks to CBD.

Does CBD Work?

As mentioned, there is extensive peer-reviewed academic research highlighting the promise of CBD for those living with inflammatory bowel diseases such as colitis and Crohn's. Gastroenterologists and healthcare professionals across all disciplines have been advocating the use of a properly supervised CBD regimen to help treat and manage a wide variety of symptoms and conditions.

As with health and lifestyle change, be sure to consult with your healthcare provider to avoid conflict with any other current treatments or medications. Additionally, your healthcare provider may be able to answer any additional questions you may have, as well as help you create the most effective treatment plan to manage your specific set of symptoms.

Written by: John Alois

Have you or someone you know used CBD to help manage their colitis or Crohn's disease? DidCBDWork.com is currently gathering experiences from millions of people, just like you, who have used CBD to help treat and manage symptoms of colitis and Crohn's disease. No matter if CBD worked for you or not, they would love to hear from you about your experience; these stories help those suffering see that there may be a solution out there for them.

Keeping a Journal

If I could go back to 1988 and visit my young self, I would stress to me to keep a journal of my symptoms and keep writing in it no matter what. No matter how long... I wish I still did. 
I did in the beginning, but stopped about a year or so later when I had emergency surgery and bowel resections. I didnt think I "needed" it anymore, but I wish I had kept it going.

The one thing I tell the newly diagnosed is to definitely keep a journal.

Typically, I would start in the morning and list what I ate, what time, was there any pain and if so, how intense and for how long. Also when I had bowel movements, consistency (watery, semi formed, etc), was there pain, blood, color, etc.  It's a great way to track results of what you ate as far as bowel movements.  Also to track food reactions and the combination of foods. 
I personally havent had a regular bowel movement in 32 years! 😳

There are some great journals out there and I like this one, designed by a Crohn's sufferers' family member:

https://www.amazon.com/dp/B084DH8852

Whether you use a journal like this one, or design your own, keeping a journal is highly recommended.  Not only for you, but for your doctors.
The more information you have can only help with your Crohn's or Colitis journey.

Humira : Day 29

Honestly, I don't see any difference between Remicade and Humira.
I don't feel any different.
I don't look any different.
The only real difference is time.
With Remicade, I had to drive out to the clinic to get infused, get the infusion and then drive home...so maybe 3 hours total.
With Humira, I take it out of the fridge to warm up a bit, then inject... so maybe 20 minutes total.
Also with the Humira, I don't even half to have a shower, get dressed, eat breakfast...nothing.
I do though.
BUT... I don't HAVE to if I don't want to and that's a bonus!!
If I showed up unshowered and naked to the infusion clinic, I think I might be sent home...
 or arrested 😆

IBD Support Groups

I must confess, in the 32 years I have had crohn's, I have never been to a IBD support group. I never thought I "needed" it, so I went through everything on my own in a sense. I had/have family and friends and now a growing online community to vent, but never a sit down, face to face meet and greet.
I'm an introvert and have trouble speaking in public especially if I don't know anyone, even though we might all be going through the same thing.
Now, having said all that, I received an email from Crohn's and Colitis Canada (like I always do), letting me know of a meeting for the Fraser Valley West Chapter , which is my local chapter. I thought this time maybe I'll go.  I mean, what could it really hurt? On the night of the meeting, I got up the nerve (and a little push from my wife) to drive out to the meeting and see.
It was in a nice meeting room in a library and as I walked in was greeted very nicely by three people already there, one of which was the Chapter president, Hailey. In total, there were 8 of us sitting around a couple of tables and it was obvious to me that I was the odd man out. Not in a bad way, but it became more aware to me that all these people have met before and for some time. Hailey started with introductions where everyone introduced themselves and a little about them as far as IBD was concerned. I said my name and that I had crohn's for 32 years and I don't think I said anything after that, I don't remember. Pretty lame, I know. Others went into more details and after hearing everyone, I'm thinking, "I should have said that, damn it!, I've had lots of surgeries too". LOL
I'm not great with speaking in public, only the written word I guess, but I made myself a resolution that 2020 was going to be the year I try and meet up with other IBD or chronic illness people.
The meeting was 2 hours and by the end I was feeling more comfortable and everyone thanked me for coming out and nice to meet me which made me feel more comfortable. I chatted with a gentleman on the way out about his experience with an ostomy as he is fairly new to it. If my crohn's gets any worse, an ostomy is the next step. Something to think about as it is always on my mind and the psychological aspect of it is hard for me.
They meet every third Tuesday of the month so I marked it down on my calendar in the hopes that maybe I'll attend again. Nice group. Maybe I'll open up a bit more as each meeting comes and goes, but there is only one way to find out.
So, the point of this post?
Don't be like me and wait 30 years to go to a group meeting.
If only just to go out and meet with others like you.

On a side note, thanks to the group for the feeling of being welcome.

Humira : Day 14

Well, so far so good. No problems. Pretty simple injecting myself. All's good!

I was a little surprised at the box that arrived to my house, though, the day before my injection.
I was expecting a little package, but it came in a large box. Inside the box was a large white Styrofoam cooler.
When I took off the lid, there was several frozen gel packs covering the two boxes of Humira.
I took the boxes out (I had to do two injections this time and then one in two weeks and another two weeks later) and there were more gel packs!
I checked out the Humira pens to make sure they were ok and put the gel packs back in the cooler, sealed the box back up, affixed the return label and called the courier to come pick up the box to return to the pharmacy.
Seems like alot to do, but still alot easier than driving half an hour to a clinic, spend and hour sitting in a chair to get infused with Remicade.
Ahhh, Remicade... my long lost friend, I hope your cousin Humira works as well as you did for me.
I did some calculations and one of my injections will be while we are away, so I am going to have to take it with me. I was hoping to avoid it, oh well. 

We gotta do what we gotta do

Humira : Day 1

Well, I'm giving Humira a go this time as the Remicade stopped working for me. My body started to become immune to the drug. It's too bad really. Remicade was a "god send" (if there is such a thing). It worked miracles for my symptoms and took most of my problems away, but the disease lingers still which was prevalent during my last colonoscopy. I never expect that it will ever fully disappear, but comparing colonoscopy results a year apart proved that the Remicade was not working anymore.

So, my Remicade lasted 2676 days, or 7 years, 3 months and 28 days.

I had my first 4 Humira injections yesterday, so I am at day 1.
I went to a clinic for patient instruction as I have never injected myself in my life and I never thought I couldnt do it, but wanted to make sure I did it properly. Better safe than sorry. They wanted me to wait for about 30 minutes after the injections to monitor my blood pressure, etc. just in case, but all's good.
I will do my next injections at home now. I have 2 injections in two weeks and then maintenance dose of one every two weeks.

Fingers crossed.....