Wednesday, May 27, 2015

Remicade : Day 1037 Fast-Tracking

Infusion day today and I lucked out...there was a cancellation and I got in early !! 
Also, today was the first day of "fast-tracking", so instead of a 2 hour infusion, it was an hour and a half.  And yes, that half hour makes a big difference =)  Fast-tracking is basically where they start the drip a little faster than normal.

We're starting out at an hour and a half to see how I tolerate it and we'll go from there.  If everything goes well after a few more infusions, the next time I see my specialist maybe I can get her to take it down to an hour.  So far, so good.


I figure after almost 3 years on the juice with no problems, it was time to start.
Today, I don't think I looked at the clock once, but I did get really tired real fast.  More than usual. 
I could have easily taken a nap right there....but I'm saving it for tonight that I might sleep.......bbbbwwwwaaaahahahahahahahahaha!!!   I'm so funny

Tuesday, May 19, 2015

World IBD Day

Yes....we have "a day"!  A day to bring awareness to all Inflammatory Bowel Diseases, a day to bring awareness that millions of us suffer in silence, a day to bring awareness that millions of us are in intense pain and others don't even know it and a day to bring awareness that the cost of medicine for us is so expensive, many of us go without.
IBD is an invisible illness and its real, it's not a "stomach ache" or "in my head" and believe me, if we could "just eat something" to gain weight, we would.  And yes, I really do have to go to the bathroom that many times !!


Wear some purple today !!



Monday, May 11, 2015

A Crohn's Reflection - Mother's Day

I remember the day like it was yesterday and I don't think I will ever forget it, for a number of reasons.  November 25, 2002 was the day that breast cancer took my mum's last breath away.  There have been 12 mother's day's since then and each one that comes and goes I always think how even though she was struggling for a few years in her own battle with cancer, she would always make sure I was taking care of myself. Parents are like that I suppose. 
She had stage 4 breast cancer when she was diagnosed.  I took her to the doctor that infamous day and when she came out crying, I knew.  I talked to the doctor myself afterwards telling me that there was nothing he could do for her other than extend her life a little longer.  I never told her that of course but gave her the same positive advise she always gave me, "you'll get through this, one day at a time".  She tried to remain positive through the whole experience, even with the hair loss and chemo treatments, calling her chemo the "red army" (the chemo juice was red), and hoping her hair would grow back curly, or at least "wavy", like mine.  She even had a double mastectomy and still she remained up beat and was cancer free for a year, until that fateful day in June 2002 when the doctor informed her that it had returned and returned with a vengeance. It had spread to her hips, liver, stomach, lungs and brain.  She had found out the day of my brothers wedding and she tried to have a good day, but you could see it in her face and some of the pictures from that day.  My fiancĂ© and I pushed our wedding ahead from June 2003 to September of 2002 so she could be there, lying to her that it was for another reason and not that we didn't think she would be around.
It came fast and hard this time and by October she was admitted to hospital because she wouldn't, or couldn't, eat.  At this point she new it wouldn't be long, but still asked how I was doing and making sure I was taking care of myself.
She went down hill fast after that and we all got called in to hospital one night by the nurse fearing she wouldn't last the night....but she did.  We insisted that we take her home for her last days as she never wanted to pass away in a hospital.  She lasted another week at home before finally on a Monday morning while we were all getting ready to go back to work after having time off, she stopped breathing and she was gone.

I wanted to write this to show how my mum, as I'm sure other mother's are, was still concerned that I took care of myself with my disease whilst fighting hers.  My only regret was that she never met any of my children. 

Mum's are a special breed and I see some of my mum in my children and I see it now in my wife in how she takes care of me and our children.

Thanks to all the mothers out there and Happy Mother's Day.

Sunday, May 10, 2015

Saturday, April 25, 2015

Crohnie Quote of the Day

It's amazing how one small change to your diet, makes one large change in your life.


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Tuesday, April 21, 2015

Remicade : Day 1001

Well, there we have it.  More than 1000 days with my body full of Remicade.
One thing I have noticed since eating more often, is that I am not AS tired as I used to be.  I still am, just not as much.  I use to get tired, or fatigued, about a week prior to infusion day, but this time, I started to get tired about a day prior.  So...an improvement.  I'm still exhausted after the infusion, but still working on that.


1000 days down.....

Thursday, April 9, 2015

You Might Be A Crohnie

If you can feel good one minute and be in hospital the next...literally
...you might be a Crohnie

Thursday, April 2, 2015

Crohn's, Sweat and Tears

Last week I saw a dietician to get started (or restarted) on an eating plan.  High protein, low fibre, little and often.  So, I have my regular breakfast, lunch and dinner, but also snacks at 9am and 3pm and another around 8pm.  I already feel I have a little more energy throughout the day.  I usually ate around 6am before work and not again until lunchtime, mainly because I didn't want to have to go to the bathroom at work (I come home for lunch).
With the help of a fellow Crohn's patient I met on Twitter, I have a 3 circuit workout program which I started on Wednesday.  DAMN!  am I out of shape!  I only did 4 exercises, 6 reps of each and I was so out of breath I had to lay down.  I'm sensing this is going to be a long process.  I certainly don't have the body of when I was a competitive skater.....no where near.
But....I have the ball rolling and have to keep it rolling, wish me luck!

Friday, March 20, 2015

New Crohn's Drug !!

A promising new drug treatment for us...from the New England Journal of Medicine....specifically a new oral drug, Mongersen.  It's just in the clinical stage, but results are promising.


http://www.nejm.org/doi/full/10.1056/NEJMoa1407250


I love when they come up with new treatments !!!!

Thursday, March 19, 2015

Crohnie Quote Of The Day

"Having Crohn's is like having an extremely bad case of the flu......except you throw up out your ass"




*please note that by no means am I saying Crohn's is like the flu