Men, Social Media and Inflammatory Bowel Disease: A Study

Back in 2019 I received an email from a PhD student (Lucy Prodgers) from the University of Leeds in the United Kingdom inviting me to take part in a study called "Men, Social Media and Inflammatory Bowel Disease". Normally I don't participate in things like this because some of these are just scams, etc. but in this case the PhD student is also a Crohn's patient and, to be honest, I was intrigued by the concept.

The study, with me and two other men, was in two parts, the analysis of my publicly available social media and blog posts specifically related to IBD followed by an interview with her to learn more about my experiences with IBD, blogging and social media use.

I did not have to do anything for the first part, just needed to give her permission to go through, and use, my social media and blog posts pertaining to IBD. The second part, the interview, was not as stressful as I was anticipating. This was almost 3 years after my initial contact with Lucy but the interview was not stressful and in fact was like I was speaking to a friend. Very fluid and comfortable. So much so, I contacted her supervisor complimenting Lucy. I found her "take" on my postings, including pictures, very intriguing and fascinating as I had never realized how others perceived my posts. I actually never thought about it before and was interesting to me.

Now, 5 years after the initial contact, her study, “How Do Men Who Post Publicly on Social Media Author Themselves and Their Experiences of Crohn’s Disease? A Dialogical Analysis of Three Cases”, is available online.

You can read the study here.

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Are Clinical Trials Necessary?? *Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

My IBD Glossary For The Newly Diagnosed

I have had another article published on inflammatoryboweldisease.net with my glossary for the newly diagnosed IBD warriors. 

Come read it here:

My IBD Glossary For The Newly Diagnosed

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

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Gutsy Walk June 4 2023

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, on June 4, 2023, 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

2023 Gutsy Walk !

Please help raise funds for Crohn's and Colitis Canada's programs and research.

Gutsy Walk this year is June 4, 2023

I am living proof that these programs and much-needed research work!  

You can help me here on my Gutsy Walk page.

Together as one, we walk to stop Crohn's and colitis

Are Clinical Trials Necessary? *Updated Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

IBD Global Network

I had my first Zoom meeting with the IBD Global Patient and HCP Network today.  The first of many meetings over the next year with other patient advocates and health care professionals to discuss the relevance and need for clinical trials when it comes to IBD. More importantly, how to improve the clinical trial process from how to get patients to sign up to helping the healthcare professionals doing the trials with better resources, research, etc.

I have always been an advocate for the clinical trial process because without them, we may not have the amazing IBD drugs we have now.

I had the chance to be part of the Remicade trials in Canada more than 20 years ago but turned it down. I only wish I had agreed to take part back then. Remicade was amazing for me when I finally decided to go on it in 2012 until my body developed antibodies to it just 8 years later. I still think about those who were part of the clinical trials that ended up helping me with my Crohn's and I thank them for it.

There are many places to look for IBD clinical trials, here are a few:

Crohns and Colitis Canada

CISCRP

Crohns and Colitis Foundation (USA)

Crohns and Colitis UK

Clinical Trials (worldwide)

Sure, you might be in the placebo group but I think that IF there is a chance for a better life with a new medication, it's worth a try. I have tried to get into several clinical trials over the years but my main problem with not being accepted is that I have had bowel resections, too many for that matter, and do not qualify.

...but you might.

 

The Perspective of a Crohn's "Veteran"

I have had another article published on inflammatoryboweldisease.net about being a Crohn's veteran with 34 years "experience".

Come read it here:

The Perspective of a Crohn's "Veteran"

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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Gutsy Walk This Sunday

There are just 2 days left to help raise funds for Crohn's and Colitis Canada's programs and research.

I am living proof that these programs and much-needed research work!  

I am also excited to be this year's Fraser Valley West's honorary chair so, join me Sunday, June 5 virtually or in-person in your community.

You can help me here on my Gutsy Walk page

Together as one, we walk to stop Crohn's and colitis.

Gutsy Walk 2022

There are just 43 days left to help raise funds for Crohn's and Colitis Canada's programs and research.

I am living proof that these programs and much-needed research work!  

I am also excited to be this year's Fraser Valley West's honorary chair so, join me Sunday, June 5 virtually or in person in your community.

You can help me here on my Gutsy Walk page

Together as one we walk to stop Crohn's and colitis

Gutsy Walk June 5, 2022

Once again I will be participating in Crohn's and Colitis Canada's Gutsy Walk on June 5th, 2022 with the Fraser Valley West Chapter.

This year, I have been named the Fraser Valley West's Honorary Chair!  It truly is a great honor to represent the Fraser Valley West Chapter this year and hope to not only money for Crohn's and Colitis Canada research, but also more awareness of inflammatory bowel disease.  Hopefully also bring more awareness to the stigma of bowel disease and now as an ostomate.

If you would like to donate to my walk, please donate here:

My donation page

The cure for IBD is around the corner. We're so close.

Thank you for your donations.

~Vern

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 !!!

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 !!!!

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

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!!

World IBD Day

Bringing awareness to Crohn's and Colitis around the world

*picture from Crohn's and Colitis Canada

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.

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 !!