Thursday, August 10, 2017

What Else Is Crohns Gonna Do......(*update*)

Went back to my Dr. yesterday to check my blood pressure after two weeks of being on blood pressure meds.  Good news and bad news, for me.

Good news.... blood pressure down and stable at 110/70 (yay!!)
Bad news.... more meds for me to take, probably for the rest of my life.

And even though my blood pressure is fine now, it's always going to be in the back of my mind every time I exert myself.  Something else to worry about.

At least the meds are cheap!!


Monday, August 7, 2017

What Else Is Crohns Gonna Do......

Crohn's likes to kick you while you're down.
On top of having Crohn's and all the fun stuff that goes along with it, I can now add high blood pressure and psoriasis of the scalp.
The psoriasis has been developing for months and months now and no help from the dermatologist.  It's because my skin cells are overdeveloping but Remicade should be helping with that, hmmm.  My GI has requested a Remicade levels check to make sure the Remicade is still working.  I've tried all kinds of shampoo for dry scalp, but nothing works.  My wife suggested using Aloe Vera, but REAL aloe vera, not the kind that's mixed with a whole bunch of other chemicals.  I found a recipe online which is aloe vera gel (from the plant itself) and coconut oil....mix it together and apply to the scalp.  Let it sit for about half an hour and wash it with a baby shampoo, or something mild.  Worked right away.  It's not gone or anything, but not nearly as bad.  I need to do it every 2-3 days for awhile before giving it a full 2 thumbs up....I've only done it once.
The high blood pressure is new.  At least since last November.  The highest it's been was 157/95 and I've been on meds for almost two weeks and the last time I checked, it was 130/80.  But now I'm tired all the time...MORE than usual!!  Great.
So lets recap.....
Crohns and all the "good" things that come with that like kidney stones, fistula's, fissures, abscesses, pain, dehydration, etc etc etc
High blood pressure
I wonder what's next.....

Saturday, July 29, 2017

You Might Be A Crohnie

If when you get a burst of energy you squeeze in as much housework as you can before getting exhausted and have to rest again... might be a Crohnie


Tuesday, July 25, 2017

Yes....I'm Fine

Ah...the proverbial answer to the question, "how are you?" .... I'm fine. 
And it's not a lie.  Not really.  If I wasn't "fine" I'd be in hospital, generally.  
And in that case it would be:

Please rip out
All my

I haven't felt THAT way in quite sometime now (knock on wood) thanks to Remicade, but as we all know, it can change in an instant.  But when I say "I'm fine" it means I'm fine for "ME".
The Crohn's is tolerable and manageable and I'm doing "fine".

Then again, if I'm not "fine" I will probably tell you I'm "fine" because...really....I don't want to talk about it.  So "fine" is the defense mechanism.  Ninety-eight percent of the time, I really don't want to talk about it and the other two percent I'm too sick to talk about it.

And really...if I was asked "how are you?" and I gave a long answer as to why I'm NOT fine...would you really understand?  Or would you just listen politely nodding your head and after I'm finished telling you how well I'm not feeling, you're just going to say, "sorry, I wish there was something I could do or say to make you feel better".  So unless you have the "cure" or have just won the lottery and are giving me some so I never have to work again...

"I'm fine, thanks" 


Thursday, July 20, 2017

Road Trip (Crohnie Style)

Long gone are those spur of the moment road trips.  Now it's days of planning and lists.  Take for example our recent family 3000 km, 8 day road trip.
Planning the route is simple.  We are making 7 total overnight stops in 6 cities/towns.  Sounds simple enough.  Except, I also noted each hospital or heath centre in each of those places and the GPS notes gas stations and places to eat, not necessarily for gas and food, but for the washrooms. I generally avoid eating while driving, or at least eat very very light until we get to our stop.
Packing for the wife and kids is fairly straight forward...then there's me.  I make sure I have at least one pair of underwear for each day, plus extra just in case.  I think I packed 11 plus 5 pairs of shorts, cuz you just never know if you have an accident or not. Also not to forget my B12, D and fish oil tablets, not to mention my Imuran. Oh yeah!!, and my new favorite toiletry--- poopourii spray for the toilet.  Works great.  I also can't forget my pad for the hotel beds that I got from the hospital for those nights you might have an accident.
So of course the morning we head out....I wake up with a head cold (which I still have) and the peri anal abscess acting up....greeeeeat.  But we Crohnies sometimes just have to soldier on.  It was a family vacation and we can't disappoint the ones we love.
We have a comfortable Toyota Rav4 so the drive was great and made it to our first stop over in about 8 hours and I needed the lie down because the next day was a lot of walking.  We drove through Jasper National Park and stopped to walk on Athabasca glacier, so cool and so beautiful and after a few more stops in the Rockies and some hiking, the next stop by that evening was a welcome relief and the bed was soooooo inviting, not to mention the toilet.  The abscess became larger the next night in Edmonton, Alberta but luckily drained on its own the following morning in time to go to West Edmonton Mall to shop and my kids could enjoy the attractions.  But after 7 hours of walking around, along with the coughing still from my cold, my body was done in and couldn't wait to rest. Onward the nest day to more sites in Drumheller, Alberta to see the dinosaurs and the Hoodoos (naturally sculpted rock formations).  My kids enjoyed climbing as I stayed below, but that's okay, as long as they enjoyed themselves, that's what matters.  I don't like having my illness affect their enjoyment.  The dinosaur museum was cool, but the hotel was a welcome relief for my bones that's for sure.  On to Calgary, Alberta next day and the Calgary Zoo.  I never realized how large this place was!!  Worth seeing, but next time I think we would do it in 2 days instead of one, especially with and abscess between your legs!! Banff, Alberta the next day and the beautiful National Park.  Its such a great mountain village to walk through with spectacular views and blue blue water.  Not a bad day health wise.  Last day was the drive home after letting the boys have one last swim in the pool.  Needless to say they didn't want to go.
Each of the 8 days, the abscess got big, but then drained and I must have lost about 5-10 pounds by only eating sparsely during the day and only really eating dinner time.  But I never really felt hungry.  Maybe because I drank alot of water....alot.
Overall a great family trip.  I would do it again.  With my fingers crossed my health holds.  At least doesn't get worse than what it is.  I always have it in the back of my mind, it never leaves.
Oh yeah.... and yes, I used 10 of the 11 pairs of underwear.

Sunday, July 2, 2017

You Might Be A Crohnie

If you know the difference between a fissure, a fistula and an abscess AND know how to deal with each one
... you might be a Crohnie

Tuesday, June 13, 2017

You Might Be A Crohnie

If you start NAMING your peri anal abscess's...
you might be a Crohnie

Tuesday, June 6, 2017

Crohnie Quote of the Day

As I enter my 29th year since diagnosis I reflect back on what my surgeon told me after my first resection and he wanted me up and walking around. It's today's quote of the day...

The sooner you're up, the sooner you're out

Tuesday, May 30, 2017

Remicade : Day 1772

I forgot to post about my last Remicade infusion and again, not much excitement to it.
I go in, stuff my hand under a heating pad, crank it up to high to make the veins "pop", weigh myself, the nurse slides in the perfectly popped vein, get the infusion and done.
This time there was an older lady, she looked as if she was in her 80's, sitting across from me all curled up in a ball in the chair and all I could think about is....I don't have it so bad.
She looked like a little child sitting there curled up, skinny, frail, sleeping. I remember a time when I use to look like that.
I've been through a lot over the 30 years with Crohn's and after seeing her, I have to keep reminding myself that I don't have it as bad as some and in a way, I guess, I'm "lucky".

Friday, May 12, 2017

Special Thanks

I'm not one to "brag" or even give that impression, but I feel I need to give thanks to and for recognizing this blog. as one of the Best Crohn's Blogs for 2017 and for one of the top 19 IBD & IBS Blogs for 2017 (Top Gutsy Writers)

Just to be recognized amongst some of the best blogs out there is truly an honor for me.
The thought that this blog might be helping someone going through what I have spent almost 30 years doing, is truly humbling and I truly appreciate it.

Thank you from the bottom of my heart.