'Twas the Night Before a Crohnie Christmas

Every year for the past 16 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

‘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 west 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's disease-free...at least for one day.

All the best for a happy and healthy 2022 !!!

-Vern

From the Editor

 Hi all!

I wanted to give everyone an update because I haven't been posting as much as I normally do.

I have been going through some changes in 2021, some good, some bad.

My time has been busy with work but also school.  Yes, I went back to school (last February).  I have been studying to be a medical transcriptionist.  I am into my 4-week practicum right now so almost done.  Since 1988 I have read all my medical notes, surgeries, clinical notes, nurses' notes, etc, and felt that I can do that too.  It's been fun these past 10 months learning about different medical conditions, both physical and mental, but also very busy and challenging.  

I needed time off work last September/October for health reasons but when I was ready to return, they fired me.  They said my position as the office manager was made redundant but...well...no comment.  One thing I can say is the absence of stress from that job has been amazing!! I was with them for 18 years and my "boss" was very cold when they called me in to say sorry, but you're done here.  Good riddance.

I have also started writing articles for a health website but I will update that later as nothing has been published yet.

So, things are turning around. I'm still dealing with my ostomy (leaks, skin, etc) but it is what it is and I will need to learn to live with my new normal of Crohn's.  The biggest change is the absence of pain. It's a weird feeling and I realize it's strange to say so, but I have had pain for 32 years straight and just 1 year of no pain.  It's great, just different, especially not having to keep T3's "in stock" at home.  I haven't taken any painkillers since December of 2020.  The perianal abscesses and fistulas are gone for now and I can actually sit on hard surfaces again (but I still prefer a cushion 😁). My kidneys are correcting themselves finally and my B12, D, and iron are the best they have ever been in my entire life.  I can't thank my surgeon enough for giving my life new meaning and I told her so a few weeks ago.  She told me it made her day to hear it.

So, all in all, things are turning around finally and I hope to post more now that school is coming to an end soon.

Thanks for the messages and for everyone reading my blog!

-Vern

  

You Might Be a Crohnie If...

 If you begin to panic when your supply of toilet paper drops below 10 rolls

...you might be a Crohnie.

One year ago.....

 As we watch Hocus Pocus (as we do each year) and the kids carving pumpkins in the kitchen, I think back to just 1 year ago where on Halloween day my doctor called to tell me to get to the ER as soon as possible... I was in acute renal failure.

To take you all back, I had temporary loop ileostomy surgery in September and was recovering at home while waiting for permanent ileostomy and proctectomy surgery (aka Barbie/Ken butt).  I needed to wait as I had multiple fistulas with my perianal disease and the temporary ostomy diverted stool away from the rectum in hopes to calm it down.  During my recovery at home, and unknown to me, I was losing too much liquid through my ostomy.  Was it watery? Yes.  Did I know any better? No.  I called my surgeon several times and was told it was part of the recovery.  But when I started to have dizzy spells, nausea, vomiting and passed out, I called my doctor requesting blood work.  The next day he called, it came back showing a GFR of 4 (low) and creatinine of 1049 (high) and to get to the hospital asap and he will call ahead for them to expect me.  I was in acute renal failure because of my ostomy.  I went by ambulance in case I passed out along the way, but I didn't.

I was put on drugs and saline as soon as I entered the ER and was waiting for a call from my surgeon at a different hospital.  I was in this ER for Halloween waiting and the next day I was transferred via ambulance to another hospital to treat my kidneys and await my other surgeries.

Fast forward 1 year.  The ostomy and proctectomy surgeries went well (6 hours).  I spent 27 days in hospital including my first time in the HICU (High Intensity Care Unit) because of my kidneys and blood transfusions.  It has taken 11 months for my GFR and creatinine to come back to "normal".  Still low, but way out of danger and looks like no kidney damage.  I now have a new doctor to add to my list, a nephrologist.  Side note... all my doctors (family, surgeon, specialist, nephrologist, and urologist) are all women and I thank them all.

It was 1 year ago when I got scared again for my health.  The thought of renal failure on top of everything else I've been through with Crohn's scared the hell out of me.  I was so close to either needing dialysis or a kidney transplant.  I am glad I requested blood work.

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You May Be An Ostomate If...

 If you subconsciously check your bag while driving through the country because of the pungent air

...you might be an ostomate

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You May Be An Ostomate If...

If you are having a get-together with family and friends and all you can think to yourself is, 

"I'm totally pooping right now"

....you may be an ostomate.

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"crohns & stuff"

 All of us that suffer from IBD have secondary illnesses (and sometimes 3rd, 4th, and 5th) in combination with our main diagnosis.  Extra "stuff" so to speak.

So having said that, I introduce my "crohns & stuff" collection on my Redbubble page.

Simple. Straight forward. Black and white. 3 words say it all.

Please come by and take a look!!

artistslaine.redbubble.com 

Thanks!!

COVID 19 3rd Dose Booster

Crohn's and Colitis Canada has recommended that people who have IBD on medications that suppress the immune system be included with other immunocompromised people getting the 3rd booster shot in the fight against COVID 19.  See here:

COVID 19 BOOSTER

As does the Crohns Colitis Foundation:

COVID 19 BOOSTER

And Crohns and Colitis UK:

COVID 19 BOOSTER

Please contact your local governments to push adding immunosuppressed IBD patients to their 3rd dose lists.  With the Delta variant becoming more and more prevalent, and with the millions of people NOT vaccinated (for whatever reason) the risk of catching COVID is still there.

You May Be An Ostomate If....

 If you say "Ahhhhhhhh...." when taking off your ostomy belt when you get home from work

...you may be an ostomate. 

You May Be An Ostomate If...

 If airport security asks, "Can I look in your bag?" and you lift your shirt

...you may be an ostomate.

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All Together Now

 If you would like to read all my "You Might Be a Crohnie" lines, they are all on one page.

From the main page, click on the "You Might Be a Crohnie" tab, or click here:

You Might Be a Crohnie

See how many you can relate to 😁

You Might Be a Crohnie If...

 If the doctor asks to see your medical file, and you ask "which volume?"

... you might be a Crohnie

10th Annual WEGO Health Awards

Once again I am humbled for being nominated in 5 categories in this year's WEGO Health Awards. Endorsements are on now until July 31 and if you would like to endorse me or this blog, please click one of the badges below to endorse. 

The WEGO Health Awards have proven to be one of the best ways to honor, recognize, and celebrate the work of patient advocates, influencers, and healthcare collaborators who are changing the patients’ lives and transforming healthcare.

Thank you in advance and good luck to all the nominees !!!

F Crohns and more !!

 Did you know you can get your own "F Crohns...it's the shits" T-shirt?

How about an "I don't look sick... You don't look stupid...looks can be deceiving" mug? 

I even have this blog logo, "Leaving the seat down" on some merchandise.

I have all these and more on my Redbubble page!!  Including many of my art pieces!!  Like-----

Come by and take a look.  Click on a picture or click the link here:  artistslaine.redbubble.com

Get yours today !!!!

Hadlima (adalimumab)

Today was my first injection of Hadlima, the biosimilar to Humira.

The injection pen was easy but it hurt more than the Humira. Only lasted a few seconds, but it definitely let me know it was there that's for sure.  It's only been an hour and so far so good.  Not that I'm expecting anything to go wrong.

I'm still not happy with the government forced-switching from a biologic to a biosimilar, but I have no choice and have to make the best of it.

Let's see where this goes shall we.

To Bag Or Not To Bag

That is the question.

It may come one day.  The decision to choose to have ostomy surgery.  Some might not have that decision as it may be an emergency.  When I had my first (of many) bowel resections starting in 1989, it was an emergency and my doctor and surgeon said to be prepared for the possibility of waking up with a pouch. In the end, it wasn't needed. Every resection I've had since there was always the chance of waking with the pouch attached.

Fast forward to around 10 years ago. My gastroenterologist strongly suggested I have ostomy surgery mainly because of my ongoing perianal disease. I had been doing "OK" with my Crohn's symptoms and frankly, I had gotten used to the perianal disease and how to "live" with it.  I had learned over the decades what to do and what not to do.  Sure it was a pain in the ass (literally), but the thought of yet another major surgery just wasn't what I wanted to do. I had just started Remicade and wanted to see how this new medication would work for me and fingers crossed, rid me of the abscesses, fistulas, and fissures.

8 years with the biologics Remicade and a year on Humira didn't seem to work for the perianal disease.  It worked wonders on my other Crohn's symptoms though. (Unfortunately, I am starting a biosimilar, Hadlima, tomorrow.)  A colonoscopy confirmed the fissures and stricturing about 6 inches inside. I made the decision to go through with the ostomy surgery along with the proctectomy with the hope to finally rid myself of the pain.  There is no guarantee of course because Crohn's is unpredictable, but after 33 years, maybe the pain will subside.

So, in September 2020 I had a temporary loop ostomy so the perianal disease can heal. It went well, but I was back in November 2020 with acute renal failure due to the amount of water I was losing. Two weeks later I had my permanent ostomy and proctectomy.  A month and a half in the hospital to maybe eliminate future hospital visits.

We are now 7 months post-op and I'm glad to have made the decision.  The only regret is I didn't make the decision sooner.  Oh sure, it's taking a long time to get used to having the pouch and I still am having some skin issues around it, and I am able to sit finally, but I wouldn't take it back. It's freeing in a way, not having to worry all the time about where a bathroom is.  There is no sudden rush anymore. The main problem right now is trying to keep hydrated in the current heatwave we are having. I am drinking about 5 liters a day, along with electrolyte drinks, and keeping out of the sun and heat. I still got dehydrated I think as I have shortness of breath, headaches, muscle cramps, fatigue, and nausea. Trial and error I guess.

So, to bag or not to bag? For me..... yes.

You Might Be A Crohnie If....

 If you have become an expert at ripping off toilet paper with one hand

..... you might be a Crohnie

Subscribing

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Thank you all for following and subscribing!!

Hadlima Biosimilar

 I live in Canada and while my country is great for universal health care, the money from the Federal government is dispursed amongst the provinces and territories for their own needs.  

MY provincial government, the NDP of British Columbia, in their "wisdom" has decided to forcibly switch my medication for the sole reason of money.  No consideration to me as the patient.  A non-medical switch from my biosimilar, Humira (adalimumab), to a biosimilar, Hadlima. Crohns and Colitis Canada, doctors and practitioners have been advocating on behalf of patients since 2019, falling on deaf ears at the government level.  They did this a couple years back when I was on Remicade. Back in April, I wrote a letter to our provincial government, the Health Minister and the Premier, as well as news agencies, and the ONLY response I received was a note from a general entity within the government, with a link to biosimilars.  I don't need more information on biosimilars and biologics, I'm pretty sure I have done way more research on the meds than the government ever did.  I asked for proof that switching patients who are long-term users of biologics, to biosimilars has no side effects.  I also asked where were all these "savings" being directed to.  No surprise I received zero response.

I am not saying that biosimilars don't work, I see plenty of evidence they do.  That's not in question.  What I am asking those who are in charge, to prove to me that forcibly switching patients for nonmedical reasons, is better than leaving them on medications that are working for them.  The decision to switch should be between the patient and the doctor and not the government. 

I have had Crohns disease for 33 years and the past 10 of those have been on biologics.  The ONLY drug that has worked for me and believe me, I've tried many.  I understand using biosimilars, but it should be for patients who have not tried biologics and keep those who are on them, ON THEM.  When, and if, the biologic stops working for them, THEN switch to the biosimilar.  Not say, "too bad, we're switching you" end of story.

I guess we'll find out what happens to me after June 2 when I am supposed to start Hadlima.  Hopefully, it works and keeps my Crohn's at bay. 

No one ever said there were ethics in government. They are proving it now.

****UPDATE****  My Hadlima starts July and not June 2

You Might Be A Crohnie If...

 If you smile and nod on the outside while someone tells you how you can "cure" your disease, but you are rolling your eyes on the inside

....you might be a Crohnie

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Crohnie Quote of the Day

 "You are more capable than you know"

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Gutsy Walk for Crohns and Colitis

Once again I will be walking for Crohns and Colitis Canada for their annual Gutsy Walk on June 6

"In the last 26 years, Gutsy Walk has raised over $46 million for research projects that have led to important findings in the understanding of inflammatory bowel disease. These findings help pave the way for researchers to build on the knowledge so that together we discover new treatments while uncovering the root of these painful diseases."

Please help me raise as much money as possible for more research!!

 Donate here

The cure is getting closer and you can be a part of it.

Possible Crohn's Disease Trigger Found..!!??

 Came across this article from McMaster University.

McMaster University: Crohn's Research

Hopefully, this leads to better treatments and maybe the cure. 

I've always wondered what triggered my Crohn's as I was healthy and athletic. Everyone I've talked to has all had different experiences, but all of us have the same question, "how the hell did I get it?" Maybe this is the beginning of the end.

Fingers crossed!

Thanks to Everyone !!

 Thank you to everyone who visited my Redbubble account this past month, there were 99 visits, and especially to those who purchased items.

As promised, 100% of my profits went to Crohn's and Colitis Canada in the form of a donation through my Gutsy Walk campaign. 

The Walk is on June 6, 2021, and this will be my third year walking and my first as an ostomate. At least I won't have to worry about rushing back to go to the washroom LOL.

Please come and participate on June 6 (virtually) and/or donate to the cause either through my campaign or someone else local to you.

My Gutsy Walk page

Thank you !!!!

Art For IBD

Exciting announcement !! 

For the month of March, 100% of my profits from sales at my Redbubble account, will go to Crohn's and Colitis Canada in the fight for a cure.

You can find a wide variety of products with my artwork here:

artistslaine.redbubble.com

Here are a few examples:

Jigsaw puzzle from my Intergalactic Cloud 2 collection

Skirts from my Flowers collection

Leggings from my Fire and Ice collection

...... and so much more !! There are dozens and dozens of products

Just remember, 100% of my profits from sales, go towards finding a cure for IBD.

Help fight the fight, and thanks in advance.

~Vern

"But, You Don't Look Sick"

I know I've talked about this before.  How people who either don't have a chronic illness, like Crohn's, know someone with a chronic illness or are a little ignorant, just don't understand. This covers a wide variety of people from friends, co-workers, employers, and even doctors.

When I was in the beginning stages of the disease, I went to several doctors trying to figure out what was going on. Pain, diarrhea, pain, blood, pain, weight loss, oh yes, and pain. I agree could be a variety of issues, but it was focused on my gut. Having said that, there was at least one doctor who even after looking at test results, questioned that it might be all in my head.

Friends, or who I thought were friends at the time, some co-workers and even some employers use to say, "but you were fine yesterday" or "you don't LOOK sick".  Not knowing or understanding, but assuming or insinuating that I was faking being sick. The fact that I was actually faking being well never dawned on them. 

So to all those doubters for the past 33 years that I have been diagnosed and battling this "fake" disease, here is a picture of the 5 full binders of my health records. 

Yes, that is 3, 3-inch, and 2, 2-inch binders. 

Come by and read all about my fake illness, including surgical notes and some pictures. 

I'll put the coffee on.

 

Artwork for Sale

Come take a look at some of my artwork transferred onto a large variety of products, from mugs and cups to skirts and shirts !! 

Artistslaine at Redbubble

Gutsy Walk 2021

 It's been a long and hard 6 months struggling with my disease.

Multiple surgeries, kidney problems, and ostomy issues, but I'm alive and getting through it...slowly. But even with all that I'm dealing with physically and mentally, there are still many others who have IBD worse than me. I'm "lucky" to be considered a mild case.

It might be too late for me when it comes to a cure for crohn's or colitis, but we can still raise some money to help find that cure. 

So again I'm participating in the Crohn's and Colitis Canada's Gutsy Walk, June 6, 2021 as part of Fraser Valley West.

Please click the link below to support my walk and help find the cure and raise awareness for IBD.

Vern's Gutsy Walk Donation page

Please help me find a cure and end the stigma.

~~Vern

Slow and Steady......

 There's that saying, "slow and steady wins the race", which may be true, but it is so frustrating.

So, for me, it's more than frustrating. I had my first surgery mid September for temporary ostomy which failed and caused further problems with my kidneys from the watery output. My GFR was down to 5 (normal LOW is 60) and was going into kidney failure. That ended me back into hospital for almost a month for my kidneys, making my ostomy permanent and a proctectomy (removing rectum and anus).

The slow part of my recovery after all of "this", is the proctectomy. It's taking way too long for my liking simply because of its location. Don't get me wrong, it's healing, just slow. On top of it all, I need to monitor my kidneys still and make sure I take in a lot of water every day. I get bloodwork every week to make sure, but they are still not up to 60. I drink a minimum of 4 liters of water everyday, but if I have watery output through my stoma (who I have nicknamed "Squirt"), I have to drink more to compensate.

It's coming along, slow and steady.

I am taking this "new year, new you" thing seriously this year. 

I definitely am new.