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

No Really, I AM Sick!

I have had another article published on inflammatoryboweldisease.net about having to prove that I really am sick and suffering. 

Come read it here:

No Really, I AM Sick!

Visit inflammatoryboweldisease.net for more articles regarding IBD

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Crohn's Disease and Mental Health

I have had another article published on inflammatoryboweldisease.net about Crohn's disease and mental health. 

Come read it here:

Crohn's Disease and Mental Health

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

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Crohnie Facts Of The Day

Crohn's Disease is SOOOO much more than just a "pooping" disease.
It can also lead to problems with:

Abscess's
Fissures
Fistula's
Malnutrition
Strictures
Arthritis
Bone loss
Vitamin deficiencies
Skin
Eye's
Kidney's
Liver
Development

Not to mention the mental health problems associated with some, if not all, of these.

"But, You Don't Look Sick"

Having a chronic illness is hard.

Not only because of the health issues that are associated with your illness, but trying to "prove" to others that you are actually sick. Crohn's disease is an invisible illness, meaning you cannot visibly see that there is anything wrong. I relate it to a duck on a pond. On the surface you see a duck, calm as can be, but beneath the water his webbed feet are moving around at a frantic pace.
In my case, I look "normal" on the outside, but some days I am in pain, or fatigued, or dehydrated, etc. all the while putting on a brave face so others don't constantly ask, "are you okay?".
I think those that suffer from IBD (inflammatory bowel disease) are the BEST actors in the world, we spend all day long pretending we look WELL.
When we're home, out of the site of friends, co workers and even family, that's when we LOOK our disease, the acting is over.

So, this is me feeling pretty good...

And this is me in the middle of having a flare...

There can be any number of things going on when you have an invisible illness, you never know just by looking at someone. The old saying, don't judge a book by it's cover, absolutely applies to IBD people or anyone suffering with an invisible illness. Only they know how they're doing, so think twice before saying...

"...but...you don't LOOK sick"

Normality

What does it mean to be "normal"?

Everyone's idea of normal is different, especially when it comes to health. Who's to say how the word 'normal' is defined. Maybe those that write the definition aren't 'normal' themselves.
The Webster dictionary defines 'normal' (as an adjective) as:

conforming to a type, standard, or regular pattern

and as a noun as:

a form or state regarded as the norm

What might be normal for some, would be considered abnormal for others, so how can it be defined?
So if that's the case, then.... there is no "normal".

When I go for my infusions every 6 weeks, the nurse asks me how I've been feeling, how often I go to the bathroom, if I've been to Emergency, etc. and I always answer the same way, "everything is normal, for me".

Every 12 weeks I get blood work done and I view my results online the next day. The results fluctuate a little here and there, but that's 'normal', for me. Sometimes I have a couple of low counts, but again, that's 'normal', for me.

What irks me the most is when I'm in hospital during a flare, or kidney stones, or abscesses, or fistula's, or dehydration, or, or.... and the doctor comes back to me with test results as 'normal'. I'm anything BUT. I'm not sure what they are comparing the results with, because if I'm in the hospital, I'm there for a reason (as I'm a procrastinator) and not 'normal', even for me.

I think there needs to be a redefining of the word 'normal'.

Maybe me and my condition are 'normal' and everyone else is 'abnormal'.....

All Aboard The Crohn's Train

It's amazing to see how social media has helped people you are in need. 
Take Crohn's Disease, or IBD in general, for example. I was diagnosed 30 years ago in 1988, but like many, I started having symptoms months before and even took different doctors to figure it out.  The doctor that DID figure it out only really knew because he had another patient that was experiencing similar symptoms.  I had never heard of Crohn's and neither had my family or friends and you have to remember, this was BEFORE the world wide web was even out yet.  You couldnt just go online and look it up.  I had to go to the library and research in a book....when I was well enough to get to the library.
Fast forward 30 years and there are web pages, blog pages, vlogs, etc. out there with a ton of information.  Facebook, Twitter, Instagram, etc. help others living with the disease connect talk and share experiences. Many great organizations directly involved with IBD and chronic illnesses, ALL with a keystroke.  It's great. Though, with all this comes the snake oil salesmen who claim they have THE cure for Crohn's.  I hate to tell them but there is no cure until they find the cause.  As many of us have many many different symptoms, there is no one "cure all".  They still have to find the trigger, that's the key, in my opinion.
I remember being feeling so isolated and alone suffering though the pain and embarrassment of the disease. Got strange looks from people because of the drastic weight loss, having been asked by a stranger once if I had AIDS.  Suicide crossed my mind many, many times.
Things I post online, either on this blog or elsewhere, is what MY experience has been.  It might not work for others and if it helps....great!  If not, well thats great too because then you know what NOT to do..... for you.  Many praise certain diets that put them into remission, which again, is great.....for them, but not for me.  Juicing for example.  I can't do juicing as it goes right through me, but for others, they have no problems.  You need to have trial and error t figure it out....for you.
I like to relate it to this...

All of us are riding the "Crohn's Train" heading towards "Cure Town" and each train car is a different symptom of the disease and within that are different levels of severity. 

It makes for a very long and tall train filled with some great people willing to help and support one another.

Crohn's Myths....

This is my personal favorite.............

if you eat this (insert whichever "fad" food(s) at the time) your Crohn's Disease will be cured.

This is a HUGE myth and totally untrue.  Your Crohn's might, might mind you, go in to remission, but it will never be "cured".

Until they find the cause, there isn't a cure.

As everyone who has Crohn's, has it in some sort of different form, not everyone will react the same way, speaking of food.  AND depending on how your Crohn's is on any particular day, or hour for that matter, will determine how you react.

So please, do not fall into any trap.  Only you know how your body is and only you know how your body reacts......

......listen to it.

Crohn's Myths.....

It's Only An Upset Stomach

Crohn's disease effects the entire digestive system. It is an inflammatory disease that cause abscesses in the intestine, uncontrollable diarrhea, vomiting, ulcers in the mouth, loss of balance and/or severe joint pain.

Read more: Myths About Crohn's Disease | eHow.com http://www.ehow.com/facts_5501228_myths-crohns-disease.html#ixzz2BnFOHxJT

IBD Myths.....

....and how many of us have heard this one eh?!
FICTION: IBD is all in your head.

FACTS: IBD is not imaginary (diagnosis depends on the presence of inflammation in your gastrointestinal tract), nor is it caused by psychological problems. On the other hand, IBD can lead to anxiety or depression. These issues are often associated with any chronic illness and are not the nature of IBD itself.

Reference: http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx

IBD Myths...

FICTION: IBD is caused by stress.

FACTS: No one knows exactly what causes IBD. There are a number of hypotheses (for example, immune system malfunction, environmental factors, genetics, infection), but stress is not one of them. Studies have shown that stress does not cause the inflammation associated with IBD, but it can exacerbate the symptoms of an inflamed digestive tract and increase IBD severity.

Reference:
http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx

IBD Myths

FICTION: Inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) are the same thing.

FACTS: It’s easy to confuse IBD and IBS, since they occur in the same part of the body (your gastrointestinal system) and often share similar symptoms, like pain and diarrhea. But there are significant differences. For example, a hallmark of IBD is chronic inflammation of the digestive tract that sometimes flares, whereas IBS is a functional disorder of the intestines that does not involve active inflammation. Keep in mind that, 30% to 40% of the time, a person may have both IBD and IBS, since once the bowel is inflamed for any reason, an irritable bowel may develop due to heightened sensitivity.

Reference:
http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx