Crohn's Obituary *repost*

I posted this about 4 years ago and I thought I would repost it because today at work I got to thinking, "would I ever feel 'good' again?", "would there ever be a day that I can go out somewhere and not have to worry if I can even make it?" 

Would there ever be a day that Crohn's Disease....dies?

Here's what I would write as an obituary for the disease....

Crohn’s Disease, prominent bowel disease, died last night from complications of losing his soul mates Ileitis and Colitis. No one is really sure of his age, but according to written records, he was over 85 years old.

Asked about the loss of his dear friend, IBS, the soon to be obsolete and forgotten disease, described Crohn’s as complicated and was looked up to by other diseases of the body for his wide range of symptoms.

In the final days of his life, he revealed an unknown side of his psyche.  This hidden quasi-Freudian persona surfaced in the super-ego-like pursuit of his desire to be the number one disease.   

Sadly, the protracted search ended early Monday morning in complete and utter failure.  Yet even in certain defeat, the courageous Crohn’s secretly clung to the belief he was to live forever.

He is survived by IBS but has also come to the realization that soon another obituary will be written about him and will only survive in the pages of old medical journals.

Go Figure

***WARNING: POOP TALK***

Having Crohn's for almost 30 years, I'm still learning things.  The past few days for example.
I've been having bloating and pain, rushing to the toilet only NOT be able to go.  I have the feeling to go, but.....nothing.  Two days of anxiety, pain, bloating, worry and WTF!; today, I might have figured it out.
I didn't eat today except for some toast and tea in the morning trying to get my gut to relax.  Still running to the toilet...and nothing...again and again and again, sometimes 4-5 times in an hour.
Then the "ahhhhhhh" moment tonight.  Not only because I finally went, but probably the reason why.
Ninety-nine percent of the time, it's water, but this time it was semi formed!!  I haven't had that in decades!  Which is why I was hurting I think.  What's left of my large intestine couldn't handle the non watery stool.
The lack of pressure now is such a relief, to the point where I can actually sit down!!
Welllllllll, except for the peri anal abscess, but that's another story.
 

You Might Be A Crohnie

If you have the energy of a sloth but can still get to the toilet in under 3 seconds...
you might be a Crohnie

You Might Be A Crohnie

If you constantly adjust your belt notches throughout the day
...you might be a Crohnie

Chronic Illness "Jeopardy"

So, last night I couldn't get to sleep and finally just got up, went downstairs and laid on the couch to watch some TV.  Flipping through the channels, I briefly saw a Jeopardy category called "4 Letter Words" so I stopped, thinking maybe some brain work would make me tired.

One of the contestants picked the category and the first one was, "high quality".  No one got it, but the word was "fine".  I immediately talked back to the TV (cuz that's what I do) and said, "that's so not the right clue for the word. The clue should have been, 'people with chronic illnesses describe themselves as this when asked', answer, 'what is 'fine' "

I guess it was too long of an "answer", but I would have nailed it!

Remicade : Day 1709

Coming closer to 5 year anniversary with Remicade.  Now it's just "routine" for me every six weeks.  Go in the the infusion clinic, weigh in, temperature taken, blood pressure taken, wrap my hand in a warming blanket set to high, to make the veins in my hand "pop", get hooked up to the juice and an hour later, I'm done.

Though....

Since January my blood pressure has been high.  Not normal for me.  I've never had a blood pressure problem.....ever.  But it fluctuates throughout the infusion.  Today was 152/103 to start, then down to 148/99, then up to 153/100 and at the end 163/109!!  What the hell!  The nurse sent notes with my past 6 months vitals to the Gastro to see if she has an opinion.
Not looking forward to the answer.  I have enough problems, thanks.

Crohnie Quote Of The Day

You Might Be A Crohnie

If you can do a complete wardrobe change while sitting on the toilet...
you might be a Crohnie
.

Facebook

Come see me on Facebook

Crohns-Leaving The Seat Down

I have everything from this blog but also other information too!!
Come take a look and follow me on Facebook!!

Oops.......Crohn's Did It Again!

Last week, my wife and I were trying to figure out what to do for the first week of spring break with the kids.  First we thought maybe head up to Edmonton, Alberta to visit family and they could see the West Edmonton Mall....but after talking with my cousins, the weather would still probably be snowing and the thought of driving through the Rockies in the snow, just wasn't that appealing to me.  Next we thought we'll head to London, Ontario, again to visit with family.  But alas no..for the same reason, snow.  Good thing too, big snow storm going through there right now.  We finally decided on staying within the province and head over to Vancouver Island and Victoria to see her family and take the kids to the "touristy" places like the Royal BC Museum, Craigdarroch Castle, The Bug Museum and Miniature World.

But that was a week ago....

We all should have left on the ferry this morning but only my wife and kids were on it and I am home laying on the couch typing this post.  Crohn's did it to me again.
About 4 days ago my peri anal abscess decided to come by for a visit.  I was hoping it would have calmed by the time we would have to leave but here I am.  It got worse each day and then finally started to drain...I was hopeful.  But it was just toying with me.  I stopped eating and switched to liquids in a desperate attempt to calm my intestines down enough to relax the abscess.  To no avail.  But, it hasn't got worse.  Nor has it got better.
Yes, I could have taken the chance and gone but if it got worse, it wouldn't be fair to my wife and kids if I was laid up in the hotel room.  It's difficult to walk, sitting is an adventure in itself, not to mention I'm just tired and exhausted probably because my body is busy fighting what's going on inside.  So I made the difficult decision to stay behind and rest, or try to.  I was looking forward to going.
It goes to show you that with this disease, plans are always "tentative", never final (for me anyway). One day everything is going along as normal as normal can be with Crohn's, then the next, it comes back to say "hello".  Just enough to remind you that it's there.  Waiting.  Ready to pounce.  Any time.