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.

You Might Be A Crohnie

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

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.

You Might Be A Crohnie

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

"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....

Next..Part Four

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

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

.

Crohnie Quote of the Day

Crohnie Quote of the Day

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

Diagnosis

Everyone's journey through the IBD diagnosis tunnel is different.
Everyone's trip down the IBD symptom slide is different.
But the common thread for all of us, is IBD itself, whether that be Crohn's or Colitis.

For me, I was finally diagnosed in June 1988 but symptoms started December '87/January '88 soon after returning from a trip to England for my Nan's funeral.
One morning I got up, showered, shaved had breakfast and laid on the couch to watch the news before work as usual. I worked as a retail manager in a large department store chain. Nothing out of the ordinary, but that was the last time my life would be "ordinary".
As I watched the news I started to feel something in my throat, like a gas bubble. I kept swallowing and swallowing to try and get it to move but to no avail. I made a cup of tea to see if that would help and it did....sort of. As I drank, I could feel it move down my throat, into my chest and into my stomach, then the feeling I had to go to the washroom and the sudden urge to have a bowl movement. And that's where and when the pain started.
Just like that.
No inclination of a problem. Nothing leading up to it. No signs. Nothing.

I was 19 years old.

Made appointment with my doctor and he thought it was unusual but went right to testing for a parasite as I had just returned from a trip abroad. Had the usual blood work and added fecal testing. Everything showed up negative of course but the pain now was more and more frequent and soon I started to eat less and less. The fetal position was now common for me. Laying on my bed, curled up, waiting for the "pain train" as I called it, to pass. I could feel the pain coming like an oncoming train, it would peak and then fade away, like the train had passed on to it's destination. I saw two other doctors in the same office when my doctor didn't know what he was dealing with and those two did the exact same tests. Now I have pain, diarrhea and blood all the time and the weight is dropping. Not sure if its from what's happening to me or it's because I'm not eating as much. Every time I ate, pain would soon follow, so why eat if it's going to hurt me.
So far, three doctors are still convinced I picked up some parasite while in the UK. By now, my clothes were hanging on me and I was pulling the belt on my pants so tight, I had to make more holes for the clasp. Keep in mind, this is 1988, there was no internet to "Google" my symptoms. I was at a loss and getting frustrated, angry and sad all at the same time. There was no history in my family.
I started my "IBD journey" at a very healthy and athletic 170 lbs (77 kg / 12 stone). I was a soccer player and a competitive figure skater prior to that. Never was sick. Ever.
I was now around 150 lbs (68 kg / 10 stone)

It's now May/June 1988.
It was the last doctor in the same office that figured it out, just on the symptoms and test results alone. "I think you have Crohn's Disease," he said, "you are showing the same symptoms as another patient of mine that was just diagnosed."
"Crohn's Disease?", I asked, "what's that?"
He went on to explain that it's an inflammatory bowel disease, which he then had to explain what inflammatory bowel disease was. Which now, thinking about it, is kind of funny.
So, I asked, (and I remember this sequence of events very, very clearly) "Okay, so how do we get rid of it?" And his answer hit me hard. "You can't," he said, "you are going to have this the rest of your life. There is no cure for Crohn's Disease."
"There must be something we can do?," my mum asked.
"Other than medications and surgery, there's nothing else I can do," my doctor answered.
I remember the look on my mum's face.

I was 20 years old.......

Next: Part Three