Saturday, June 22, 2019

Crohnie Quote of the Day

I don't look sick...

                              You don't look stupid...

... looks can be deceiving

Wednesday, June 5, 2019

Remicade : Day 2507

Infusion #61 turned out to be a little more eventful than normal.

I was switched from 400 mg, which I have been on since 2012, to 600 mg for my last 3 infusions.
Now, for this infusion, my doctor raised my dosage to 800 mg and we're going to see how that goes to help my peri anal disease (fistulating). New research has shown doses of 1000 mg of Remicade has helped with fistulas so we're slowly raising my dose to get to that point.
So what made this infusion different than all the others? Well, let's start with my arrival to the clinic. I pulled into the parking lot with 5 RCMP vehicles spread throughout. One at each entrance and 3 in front of my clinic lights flashing. Of course my first thought was, "ah crap, the clinic better not be closed". It was an interesting site. No one in the cars, but lights flashing and cars running. Luckily the clinic was open but no one knew what was going on. There's a bank in the complex, so maybe it was robbed...who knows. That was event number 1.
Event number 2 was happy and sad at the same time.
When I get to the clinic, I have my blood pressure and temp taken followed by checking my weight.

Blood pressure - good
Temperature - good
Weight - ummmmmm....... I think the scale's broken.

The read out said 83.9 kg (185 lbs, 13 stone) I first thought, that can't be right. The nurse said to try it again. Yep, same the second time. She asked why I thought it was wrong and I asked her to check my last infusion weight. She goes "Oh, what have you been eating?"
I was 77.9 kg (171 lbs, 12 stone) just 6 weeks ago, but I haven't changed my diet...other than eating jujubes...since then. I know I didn't eat 14 lbs of jujubes!!

So... "happy" I'm gaining weight and "sad" I'm gaining weight.

During my infusion I thought over and over what I did different....nothing. So the only thing I can think is, the change in my dosage from 400 to 600 mg helped immensely in how my bowels are absorbing nutrients now. Now, I'm at 800 mg and if this keeps up, I'm going to have to go on a diet for the first time in my 51 years.


(.... and give up jujubes)

Monday, May 27, 2019

Remicade (Infliximab) Levels

Have you ever known what your Remicade "levels" were? Precisely they're called the

Infliximab trough concentration levels

Now, to be honest, I never knew what these were, only that I have heard my specialist talk about my Remicade levels and how they are fine. I get blood work every now and then to check them to make sure I even have some.
But not until today, when I went to my semi yearly visit to my specialist did I understand what they were. She was telling me that she wanted to raise my dose to 800 up from 600 every six weeks to try and combat my lingering peri anal disease. She went on to tell me that my Remicade levels had dropped to 2 ug/mL (microgram/milliliter) from 3.
Which basically is the lowest level the Remicade has reached before I get my next dose.
Ideally the target level should be between 3 and 7 ug/mL, that's the target at least.
What scared me a little was the fact that she wants my levels to reach 10. But if the highest range is 7...what the hell is 10?! She went on to tell me that new research has shown that peri anal disease does well with levels to 10 ug/mL.
In my case, the Dr thinks my levels were maintaining above 3 because I was taking Imuran (azathioprine). But for the past few months, I've been weening off of it so, she is raising my dose of Remicade instead.

First dose at 800 is next week.

Well... let's see what happens, shall we.

Fingers crossed.

Saturday, May 25, 2019

You Might Be A Crohnie

If you know you're gaining weight, simply because your thighs are now touching
.... you might be a Crohnie

Thursday, May 16, 2019

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.



Thursday, May 2, 2019

You Might Be A Crohnie

If you have discovered that there are multiple ways to sit on a toilet
...you might be a Crohnie

Wednesday, May 1, 2019

"Crohn's Disease Ate My Colon" - My story (Part Three)

What the hell is Crohn's Disease?

You can't imagine what it's like to be diagnosed with a chronic illness, no cause, no cure and to be an illness that involves your bowels. So embarrassing. I had to look up what the fuck Crohn's Disease was, which meant having to physically go to the library and even then, there wasn't much on the shelves.

The Internet wasn't invented, smartphones wouldn't be here for years, so I couldn't just sit down and search the world wide web to find out about Crohn's. No social media or online support groups like there is now. Everyone around me had no idea what Crohn's was nor had they ever heard of it.
So, or course, I immediately went to "what the hell did I do, to get it in the first place"? I remember racking my brain over and over on what I might have done in my life that would cause me to get sick. I looked through as many books as I could find, was it something I ate?, something I did as a kid maybe? You see, I rarely got sick growing up, so the prospect of now living with a disease that I couldn't get rid of or know how I got it in the first place, just devastated me.

What I was able to discover was that Crohn's Disease is an inflammatory bowel disease that can affect anywhere in the digestive tract from the mouth to the anus. Basically, the immune system attacks the digestive tract thinking it's a foreign body, usually at the end of the small intestine where the small and large intestines meet (as in my case). Why? Good question.
It's a chronic condition, which essentially means I will have it the rest of my life. There will be times of remission and times of flare ups, but it will be on going and last forever. Or until a cure is found.
Where symptoms are concerned, mine were sudden, one day I was fine, next day I had pain coming from my abdomen, followed by frequent diarrhea, fatigue, loss of appetite and weight loss.
Causes..??  No one knows for sure, but genetics are a factor as well as the environment, bacteria or stress. The main problem, I think, is that no one knows what the trigger is. There has to be something that happens in the body that tricks the brain into thinking your intestines are a foreign body and starts attacking it. Not everyone gets it, so what is the trigger?

And of course, everyone's experience with Crohn's or Colitis is different. So everyone's treatment and meds will be different. Mine began with 1000 mg of Salazopyrin (Sulphasalazine) and 40 mg of Prednisone. Remicade (Infliximab) in my case, won't be around for another 10-15 years.

And so began my journey into the world of doctors, specialists, nurses, anesthetist's, surgeon's, clinic's, hospital's, and much much more.

I was still only 20 years old....

Coming up.....Part Four

Thursday, April 25, 2019

Thank you !!

I know I haven't been posting alot this month, but my health has not been good for the past few weeks. I have been dehydrated and now have a cold. But with a simple cold AND dehydrated AND have Crohn's, it knocks you down.
I wanted to say THANKS!! to everyone that has visited my blog. I noticed that it has reached over 250,000 views.
I am always thankful to everyone that comes by, also humbled by all the fantastic comments and emails I receive.  There are many of us out there that need help, support and reassurance.
I will be posting more about my "Crohns Disease Ate My Colon" series soon.

Thanks again to everyone !!

~Vern

Sunday, April 14, 2019

You Might Be A Crohnie

If you can drink water, the equivalent to the size of Lake Michigan, every day, and STILL be dehydrated
...you might be a Crohnie

.