My Crohns Life: Fun Facts

Since my diagnosis, I have been a "professional sick person" and living with Crohn's disease for approximately:

34 years, 4 months and 23 days

that's...

412 months and 23 days...

1794 weeks and 5 days...

12,563 days...

301,512 hours...

18,090,720 minutes...

1,085,443,200...201...202...203 seconds

Furthermore, the earth is 24,902 miles. If you walk an average of 3 mph, it would take you 8300 hours if you didn't stop and you kept up that pace. That's 345 days.  (Quora.com)

So, having said all that and factoring in those facts, if I started walking around the world the first day I was diagnosed, I would have gone around 36 times by now! 

Things that make you go, hmmmmm.

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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.

 

Experiencing a Bowel Obstruction With Crohn's

I have had another article published on inflammatoryboweldisease.net about experiencing a bowel obstruction.  

Who knew carrots could have been the death of me.

Come read it here:

Experiencing a Bowel Obstruction With Crohn's

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

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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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Perianal Disease: A Literal Pain in the Butt

I have had another article published on inflammatoryboweldisease.net about my Crohn's related perianal disease.

Come read it here:

Perianal Disease: A Literal Pain in the Butt

Visit inflammatoryboweldisease.net for more articles regarding IBD.

Deciding To Get Ostomy Surgery

I have had another article published on inflammatoryboweldisease.net about how my IBD journey continues.

Come read it here:

Deciding To Get Ostomy Surgery

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

My 34-Year Crohn's Journey Continues

I have had another article published on inflammatoryboweldisease.net about how my IBD journey continues.

Come read it here:

My 34-Year Crohn's Journey Continues

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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