Friday, August 17, 2018

Remicade : Day 2213

6 years, 22 days since I started Remicade. It's done wonders for controlling most of my Crohn's symptoms, but not all.  I don't think it will ever be able to. I still have an ongoing issue with fistula and abscess, but then there's the underlying problems secondary to Crohn's like chronic fatigue, kidney stones and psoriasis.
But I still go faithfully every 6 weeks to get "the juice", I guess you can call me an IV drug user, so to speak, because the alternative is not something I want to go back to.
The 24 years prior to Remicade were filled with pain, surgeries, weight loss, depression, probing, worry, loss of friends, anxiety, etc. I don't want to go back there. And because I've been there, I know what the newly diagnosed are feeling.  All I can say is, with the advancements every day for the treatment of Crohn's and Colitis, you have better chances at getting thru it.
Hopefully they will discover the cause so we can have closure.

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Sunday, August 12, 2018

Missing a Family Trip......again

One thing I've learned after over 30 years of having Crohn's, plans are never "confirmed". Take this past week for instance. A few weeks ago we planned a small trip for 3 of 4 days to visit some family and take in the sites.  A "stay-cation" so to speak. We had planned to leave on Tuesday evening and had reserved our spot on the ferry and everything was on track for that to happen. I came home from work and was waiting for her while getting everything ready to load up the car.  We were about 30 minutes or so from heading out when I had the sudden feeling I needed to go to the bathroom and then like I was going to be sick. There's no weirder feeling then sitting on the toilet and needing to be sick. Right away I knew I had a blockage. So immediately I started to think, "what the hell did I eat today that would have caused this?" Then the pain started right under my rib cage and that confirmed it for me, plus the fact even though I had the urge to go to the bathroom, nothing was coming out.
Now came the dilemma. Do I still go on the trip and run the risk of more happening? Talked with my wife and we decided that I would stay behind and meet up with them the next day or two because I really wanted to go, but at the same time don't want to take any chances.
By the next day though, I had been sick, in pain, stopped eating, couldn't go to the bathroom, didn't sleep and now my peri anal abscess got bigger. Needless to say, I didn't go the next day either....or the next.....or the next. I got alot of rest though, but its not the same as spending time with the family.
It didn't start getting better completely until Friday and by then it was too late as they were coming back Saturday.  I hate missing out on family outings. What I hate the MOST is the unpredictability of Crohn's.
Never did figure out what I ate to cause a block, but when I really thought about it, I might not have done anything.  I could have just had a flare which caused some inflammation leading to a block.  You just never know with this disease. It's like, Crohn's is inside me with some buddies of his (or her), sitting around chit chatting, when Crohn's gets up and says "watch this...."  And 'boom' I'm down.
But, not out.

Saturday, August 4, 2018

You Might Be A Crohnie...

If your "skinny jeans" hang like you can fit another another person in them with you
...you might be a Crohnie 

Monday, July 16, 2018

You Might Be A Crohnie.....

If you have become somewhat of an expert at rating public washrooms
... you might be a Crohnie

Thursday, July 5, 2018

Remicade : Day 2187

July 25, 2012... The first day of Remicade infusion, tired, fatigued, underweight (150 lbs), multiple fistulas and eager to get going.

Fast forward 6 years...53rd infusion, more energy, ideal weight (170 lbs), still one irritating fistula, but not nearly as bad, and still eager to keep it going.
My weight has finally stabilized and I weigh the same now that I did 30 years ago before I got sick. The only difference is the way its distributed throughout my body...LOL...
I used to have it well distributed being a figure skater (legs, arms, butt, etc) now its more around the waist, but I am working on that with a trainer getting my core back and adding muscle (maybe get my butt back) Crohn's tends to take all the muscle once it's done with the fat.  I remember at my worst I weighed 120 lbs.
All in all, I am glad I decided to take the plunge and start Remicade, its worked wonders for me.  It may not work for everyone and one day it might stop working for me, but in the meantime, I'm trying to take full advantage!

Thursday, June 28, 2018

Happy 30th Crohniversary !!

It was 30 years ago this month, in 1988, that I was diagnosed with Crohn's Disease and it's definitely been a roller coaster ride.
I've actually had Crohn's for more than 30 years because I was having symptoms long before and took many months for doctors to come up with a diagnosis.  And yes, doctors, not doctor.  Finally the last doctor was able to diagnose it because he had another patient with the same symptoms etc. It was soon after that I was in hospital for surgery to remove some of my bowel and so my life took a left turn and went in a totally different direction than I thought it would.
One surgery lead to two, then three and now I've lost count the amount of times I've been in for surgery for one thing or another related to Crohn's.  Resections, kidney stones, abscess's, fissure's, fistula's, the list keeps growing.  I tried all kinds of meds, some worked, some didn't but eventually found a good combination that kept things stable...for awhile. I've been from a healthy 170 lbs on a 5' 10" frame before Crohn's, to a low of 115 lbs at my worst.  I've had friends come and go, mainly go, but the good ones stayed. I've had too many different jobs because I couldn't work. It took everything I had to just get up in the morning, or just to "move". I've even been to that dark place in your mind where you just want to give up.
Today? Well I haven't really had any surgeries for a long time, I'm on one medication (Remicade) every 6 weeks, I'm a stable 168 lbs, I still have the good friends and made some new ones (mainly through the IBD network), I've worked for the same company for 14 years now. I have most, but not all, of my energy back and am working out.  There are still good days and bad days, but that's with anyone I think. I'm been married for 16 years to a wonderful woman who didn't seem to flinch when I told her about my condition soon after we went on our first date.  We have 2 boys now and yes, it crosses my mind all the time whether they will get Crohn's, especially when they come to me or my wife with a "tummy ache".  My mind has not looked back towards the dark.
To think, when I was diagnosed, the World Wide Web wasn't around yet.  Today, because of social media, those of us living with Crohn's or Colitis, have access to so much information, support groups and access to others with the same disease. There's lots of support, not only locally but from around the world !
There's no reason to be alone anymore.


Monday, June 18, 2018

Special Thanks !!

I wanted to give a special "Thanks!" to Benjamin Nash Design for the great logo for my blog.
He was great to work with and easy to bounce ideas off.
If you're looking for logo work I highly recommend Ben.
Thanks again for your help and the work done!
He can also be found on Instagram @benjaminnashdesign


Wednesday, June 13, 2018

You Might Be A Crohnie...

If you have tried every brand of toilet paper and can rate them by heart
...you might be a Crohnie

Tuesday, June 5, 2018

You Might Be A Crohnie...

If you begin to recognize phone numbers written on the public toilet walls
... you might be a Crohnie

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Monday, May 21, 2018

Crohn's Obituary

In honor of World IBD Day, I am reposting my Crohn's obituary for the day IBD is cured.....

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 86 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.