Sunday, October 16, 2016

Remicade : Day 1546

This month was really non eventful as far as my infusion goes.  It was the lead up that had all the "excitement".  To start, my infusion was changed from my usual "home base" to one further away, which is fine I guess, but it screws with my routine the day of.  I forgot to pre order my meds so I was freaking out the pharmacy wouldn't be able to get it in in time.  I usually call it in about 4-5 days before just in case they have to get it in...but I forgot and ordered it the day before! Luckily they got it in about 3 hours before I had to leave, whew! I can't believe how much these meds cost and how it keeps rising in price!  Then, when I got to the infusion place, it was soooo busy I had to get my IV started in the waiting room.  The company that schedules everything, clearly overbooked or didn't take into consideration the time everyone's infusions take.  The nurses were great, but clearly were being run off their feet.  They kept apologizing but I told them not to worry about it, it obviously was not their fault.  Then after my dose of the juice, I left and forgot my cold bag and had to go back but needed to get some blood work done anyway to check my Remicade levels...but it was a very eventful Remicade 1546 day.  Hopefully my next wont be.

Thursday, October 6, 2016

Crohn's and the Changing Seasons

Ahhhhh, Fall.  The change in the air, change in the leaves, change in the weather and a change in the Crohn's !!
It is this time of year I both love AND hate.  For everything I mentioned above, yes, but I hate what it does to my Crohn's symptoms.  It's like there's a switch and once it was flipped to Fall, so was my Crohn's switch flipped.
I get more symptoms and problems this time of year than any other, except maybe winter, even though generally, I'm doing well.  I'll give you an example...
This past Monday was like any other Monday, get up, go to work, come home and have a quick dinner so I can take my son to soccer practice.  That was until I ate dinner.  Nothing out of the ordinary, generally because I'm going to be out and don't want to have to go to the bathroom, but after I ate, I laid on the couch and had a quick "shiver".  Again, nothing out of the ordinary.  BUT, that one shiver led to two, then more, then I couldn't stop.  I call them "the shakes" and I get them once in awhile, but have no idea why (and neither do my doctors).  I covered my self in a blanket, then two, then my son piled the freshly dried towels from the dryer on top of me to keep me warm.  Funny thing was, I didn't feel cold.  It got progressively worse...ever try texting while shaking...don't recommend it.  I was trying to text my sons coach that he wouldn't make it to practice and possible team photo's later that night.  I put myself to bed bringing all the blankets with me and added them to the comforter and blanket already on the bed.  The shaking got (and gets) so bad, my muscles and joints starts to ache and fever and headaches kick in.  I try to keep hydrated, but that's fun to watch.  What's worse is trying to urinate while you're "convulsing" hindsight, I probably should have sat down LOL, but what's done is done. 
Fast forward 4 hours later, yes, 4 hours, when I vomited and almost immediately the shaking stops.  I still shook a little, but 90% better than what I was.  Now I get to deal with joint pains in my knees, hips and jaw, muscle ache in my legs and arms and THE most painful headache.
I have been through this several times over the years and have learned that once I vomit, the symptoms seem to go away.  The closest my doctors have come to figuring it out is something call "rigors" which essentially a sudden attack of severe shaking, but have no idea why.
I've even gone to hospital once when it first happened years ago and even they couldn't figure out why. I like Fall??  My senses say YES! My body says, uhhhh...NOPE!

Monday, September 26, 2016

Crohnie Quote Of The Day

Look what I found!!! 

It's a Crohns, Colitis and IBD rule book....

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Thursday, September 22, 2016

WEGO Health Activist Awards

My blog has been nominated for a WEGO Health Activist Award for "Best in Show: Blog".
I am thankful, and humbled at the same time, for the nomination.  If you would like to endorse the nomination, please go to:

and click on the "Endorse" button under my picture.
I thank you all in advance, but it really IS nice to be nominated

Sunday, September 18, 2016

Crohn's and Fitness : Part 3

Just a quick update, as I haven't updated as often as I'd like, on my fitness program.
Over 2 months in and believe it or not, I' still working on core work.  Yes, that's how bad my core is.  I'm on a new set of moves now and it's slowly working.  It's amazing how small deliberate moves can strengthen your abs and back.  We're not moving to weights until the core is strong....or stronger at least.
I've had some minor "problems" with my Crohn's, like small flares, but nothing serious thank god.

Slow and steady

Tuesday, September 13, 2016


Check out this new Crohn's community site. 
Also on Instagram, Facebook and Twitter!!

Wednesday, September 7, 2016

You Might Be A Crohnie

If getting out of bed and having a shower is your version of "working out" might be a Crohnie

Tuesday, August 30, 2016

Remicade : Day 1498

I missed my regular infusion day by a week because I was away on holiday, so needless to say, I am tired and exhausted.  It's always amazing how my body knows when it's time for "the juice".
I seem to be maintaining my weight finally after 25 + years.  I'm able to eat and not have to rush to the washroom all the time.  Not that it doesn't happen, but it happens less often. 
I've said it before and Ill say it again, Remicade has turned my life around.  Fingers crossed it keeps working.

Sunday, August 14, 2016

Saturday, August 13, 2016

Crohn's and Weight Loss / Gain

One of the biggest things I had to go through when I got Crohn's was the drastic weight loss.  When I say drastic, it came hard and fast.  It was scary at the time and there was nothing I could do about it.  Some of it was the disease itself I think, but also I just stopped eating.  It hurt way too much after I ate.  I had dropped so much weight, at one point a stranger on the street asked if I had AIDS.  Keep in mind, this was the late 80's and AIDS was a big "thing" then.  That comment hit hard for me and I didn't want to go outside anymore.  I didn't want anyone to see me.
So to give you an idea about how I WAS...before I was diagnosed I was a competitive figure skater and I played soccer as well.  I was fit and strong, thick thighs and such a tight ass (just sayin)  I weighed 165 pounds (11.7 stone or 74.8 kilos) at 5' 10", I looked great and "healthy".
By the time I had my first surgery I weighed a mere 115 pounds  (8 stone or 52 kg).  I was skinny enough that the surgeons were a little concerned about doing the surgery, but it was an emergency at the time.  I had a grapefruit sized matting of the intestines.  That was 1989....
It has taken me to 2016 to get my weight back up, I am now 160lbs, almost to my original weight.  Gone are all the muscle I had, Crohn's had them for a snack after it ate all my fat, but thanks to Remicade, it has slowly gone up and has stayed there for a few months now.
I hope to keep it as I have started working out.  With the help of my trainer I'll get there.
I want my muscle back, not to mention my ass!!