Sunday, December 16, 2018

Crohnie Advent Calendar : Day 16

Opening door #16 today to find....

Vitamin D !!
(sunshine in a pill)

Check back each day until Dec 24 !

12 Days Of A Crohnie Christmas : Day 4

On the fourth day of Christmas, my Crohns Disease gave to me.........
...4 kidney stones,

3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

Saturday, December 15, 2018

12 Days Of A Crohnie Christmas : Day 3

On the third day of Christmas, my Crohns Disease gave to me.........
...3 bone density tests,

2 peri-anal abscesses,
and a painful colonoscopy.

Crohnie Advent Calendar : Day 15

Opening door #15 today to find....

epsom salts !!
(to help those "burning" days)

Check back each day until Dec 24 !

12 Days a Crohnie Christmas : Day 2

On the second day of Christmas, my Crohns Disease gave to me.........
...2 peri-anal abscesses

and a painful colonoscopy.

Friday, December 14, 2018

Crohnie Advent Calendar : Day 14

Opening door #14 today to find....

a book called "The Million and 1 (and then some) Excuses Why I Can't Go Anywhere (but I really want to) Because of My Crohn's"
(because there just aren't enough)

Check back each day until Dec 24 !

Thursday, December 13, 2018

12 Days a Crohnie Christmas : Day 1

On the first day of Christmas, my Crohns Disease gave to me.........

...a painful colonoscopy.

Crohnie Advent Calendar : Day 13

Opening door #13 today to find....

Multi vitamins !!  
(eventhough no matter how many you take won't be enough)

Check back each day until Dec 24 !

Wednesday, December 12, 2018

Crohnie Advent Calendar : Day 12

Opening door #12 today to find....

Another bag of Costco toilet paper !!  
(because you've already ran out from December 1st)

Check back each day until Dec 24 !

Tuesday, December 11, 2018

Crohnie Advent Calendar : Day 11

Opening door #11 today to find....

A T-shirt that says "I know I don't LOOK sick" !!  


Check back each day until Dec 24 !

Monday, December 10, 2018

Crohnie Advent Calendar : Day 10

Opening door #10 today to find....

A keg size bottle of Poo-pourri !!  
(everyone thanks you)

Check back each day until Dec 24 !

Sunday, December 9, 2018

Crohnie Advent Calendar : Day 9

Opening door #9 today to find....

A "Get out of work (but still get paid) card" !!  
(wish I had one for each day of the year)

Check back each day until Dec 24 !

Saturday, December 8, 2018

Crohnie Advent Calendar : Day 8

Opening door #8 today to find....

Piece and quiet !!  
(so we can nap!!)

Check back each day until Dec 24 !

Friday, December 7, 2018

Crohnie Advent Calendar : Day 7

Opening door #7 today to find....

Protein Bars !!  
(for that nice light snack)

Check back each day until Dec 24 !

Thursday, December 6, 2018

Crohnie Advent Calendar : Day 6

Opening door #6 today to find....

B 12 !!  
(we all need that "boost")

Check back each day until Dec 24 !

Wednesday, December 5, 2018

Crohnie Advent Calendar : Day 5

Opening door #5 today to find....

Pillows !!  
(you know, cuz you need one for your head, between your knees, under your knees, small  of your back and generally just be surrounded by pillows)

Check back each day until Dec 24 !

Tuesday, December 4, 2018

Crohnie Advent Calendar : Day 4

Opening door #4 today to find....

Prednisone !!  
(even though you don't want it....you need it)

Check back each day until Dec 24 !

Monday, December 3, 2018

Crohnie Advent Calendar : Day 3

Opening door #3 today to find....

Broth !!  
(for those flare days)

Check back each day until Dec 24 !

Sunday, December 2, 2018

Crohnie Advent Calendar : Day 2

Opening door #2 today to find....

Baby wipes !!  
(only IBD'ers will understand)

Check back each day until Dec 24 !

Saturday, December 1, 2018

Crohnie Advent Calendar : Day 1

December 1st marks the first day of the Crohnie calendar, so let's see what's behind the first door this year....

Costco size bag of toilet paper !!


Check back each day until Dec 24 !

Wednesday, November 28, 2018

"But, You Don't Look Sick"

Having a chronic illness is hard.

Not only because of the health issues that are associated with your illness, but trying to "prove" to others that you are actually sick. Crohn's disease is an invisible illness, meaning you cannot visibly see that there is anything wrong. I relate it to a duck on a pond. On the surface you see a duck, calm as can be, but beneath the water his webbed feet are moving around at a frantic pace.
In my case, I look "normal" on the outside, but some days I am in pain, or fatigued, or dehydrated, etc. all the while putting on a brave face so others don't constantly ask, "are you okay?".
I think those that suffer from IBD (inflammatory bowel disease) are the BEST actors in the world, we spend all day long pretending we look WELL.
When we're home, out of the site of friends, co workers and even family, that's when we LOOK our disease, the acting is over.

So, this is me feeling pretty good...


And this is me in the middle of having a flare...


There can be any number of things going on when you have an invisible illness, you never know just by looking at someone. The old saying, don't judge a book by it's cover, absolutely applies to IBD people or anyone suffering with an invisible illness. Only they know how they're doing, so think twice before saying...

"...but...you don't LOOK sick"

Monday, November 12, 2018

You Might Be A Crohnie

If your son's nickname for you is "the ass of death"
... you might be a Crohnie

Friday, November 9, 2018

Remicade : Day 2299

I have had the same IV nurse for almost all of my 2299 days, but sadly she has since retired and my first infusion with a new nurse.... she misses the vein 😒
I said I wanted to heat up my hand, but she insisted she could get the vein....needless to say, she let me heat it up a good 10-15 minutes before trying again.
After I unwrapped my hand, she said, "Oh, that's better!"

Really.......

Thursday, October 25, 2018

My Sit Down With Pamela Jessen

For the month of October, Pamela Jessen, a chronic illness blogger featured HERE is featuring interviews with a wide variety of people with chronic illnesses. It was a pleasure to be interviewed by here and to be included with such great people, including fellow Crohn's blogger Jenni from Jenni's Guts I am always honored and humbled to be included with the many people bringing awareness to their predicament
Thanks to Pamela for keeping awareness alive for all kinds of chronic illness sufferers.

Monday, October 15, 2018

You Might Be A Crohnie...

*Repost*

If you can actually spell G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.....
you might be a Crohnie


.

Friday, October 5, 2018

Remicade : Day 2263

Bitter sweet infusion a week ago Wednesday. The infusion nurse that I've had since Day 1 told me that she is retiring and I'll have someone new at my next infusion.

My infusion nurse, Margaret, you have to understand, would call me hours before my scheduled appointment to see if I wanted to come in early so I can get home in time for my kids. My infusions are only an hour, but with weighing in, paperwork, prepping the "juice", etc. it was more like an hour and a half, so she would call when she got there and ask if I wanted to come early. I was always waiting at home doing nothing anyway, so I took her up on her offer every time.
She only worked the one day a week, my day, but she had been a nurse all her life and was time to do other things. Good for her.

She would use the same vein on my left hand, affectionately called "Margaret's vein". I'm thinking I'm not going to get the same kind of treatment, but you never know, I might get someone just as nice.

Saturday, September 29, 2018

Rigors

This past week has been long and tough. I had been feeling not too bad prior but then last Monday night/Tuesday morning, things just went the opposite direction quickly.
I wanted to show how, with Crohn's, when I say one minute you may be fine and the next you could be in hospital.
Monday was the same as any other, nothing out of the ordinary, other than starting to feel worn down because my Remicade (mouse juice) was coming up on Wednesday. That was until the middle of Monday night. Around 2am I got up to go to the bathroom, again not unusual, and got back into bed and under the covers as I started to feel chilly. I wish I was just feeling cold.
I started to get the shakes and shivers, as one does when you get chilly, but after a good few minutes I knew it was the start of rigors. I don't get them that often but when I first got them, I had no idea what was happening and it scared the hell out of me. The first couple of times, I called the ambulance because it was so severe, my jaw was clenched to the point of becoming locked. The doctors at the hospital had no idea what was happening to me.
For those that don't know what rigors is, simply, its uncontrolled shaking and tensing of all your muscles. I try to calm them down by deep breathing, but it only helps for a few seconds. I even would cover myself with every single blanket in my house. Once I had my son take everything out of the dryer and dump it on me...no help.
It's the most helpless feeling. I want to stop, but can't.
This past attack lasted about 2 hours and, like always, after I threw up, the shaking started to slow and then eventually...just...stop. Then the aches, pains and headaches start. I also run a slight temperature and high heart rate. As you can imagine, after two hours of non stop shaking and clenching, one would ache all over. I feel it in my joints, especially my knees, and all my muscles. My head just pounds for hours and sometimes days. What lasts for hours, takes days to recover.
I was worried this time because my infusion was the next day and I was still running a slight temperature of 37.8C, but my IV nurse said it was still okay. She was more worried about my 115 heart rate. But by the time the infusion was done, it was down to 102, still high, but on its way down. Goes to show how long it takes to recover from a rigors attack.
For me, I no longer go to hospital and ride it out at home because I know that after a few hours, I'm going to throw up and it'll be over. Why it happens? Beats me. I know that Crohn's is a factor and I have an on going abscess, which also is a factor. I figure its another way my body of fighting off some sort of infection. This is my experience with rigors, yours might be different. I've had probably around 10 -20 attacks in 30 years. Always check with your doctor on what you should do.
Hey, if after all these years my body is still fighting... I'll take it.

Tuesday, September 18, 2018

You Might Be A Crohnie...

If you have become an expert on looking WELL
....you might be a Crohnie

Monday, September 17, 2018

Crohnie Quote of the Day

Being "tired" does not necessarily mean I didn't get enough sleep, it could mean that my body is "tired", which means I'm fatigued or worn out. As if I just ran a marathon.


...but it could mean I didn't get enough sleep as well.

.

Tuesday, September 4, 2018

You Might Be A Crohnie...

If you can never go "commando" again....ever
...you might be a Crohnie

Tuesday, August 28, 2018

Normality

What does it mean to be "normal"?

Everyone's idea of normal is different, especially when it comes to health. Who's to say how the word 'normal' is defined. Maybe those that write the definition aren't 'normal' themselves.
The Webster dictionary defines 'normal' (as an adjective) as:

conforming to a type, standard, or regular pattern

and as a noun as:

a form or state regarded as the norm

What might be normal for some, would be considered abnormal for others, so how can it be defined?
So if that's the case, then.... there is no "normal".

When I go for my infusions every 6 weeks, the nurse asks me how I've been feeling, how often I go to the bathroom, if I've been to Emergency, etc. and I always answer the same way, "everything is normal, for me".

Every 12 weeks I get blood work done and I view my results online the next day. The results fluctuate a little here and there, but that's 'normal', for me. Sometimes I have a couple of low counts, but again, that's 'normal', for me.

What irks me the most is when I'm in hospital during a flare, or kidney stones, or abscesses, or fistula's, or dehydration, or, or.... and the doctor comes back to me with test results as 'normal'. I'm anything BUT. I'm not sure what they are comparing the results with, because if I'm in the hospital, I'm there for a reason (as I'm a procrastinator) and not 'normal', even for me.

I think there needs to be a redefining of the word 'normal'.

Maybe me and my condition are 'normal' and everyone else is 'abnormal'.....


You Might Be A Crohnie...

If you turn on the radio at work to help drown out the noises coming from your abdomen
...you might be a Crohnie
.

Sunday, August 26, 2018

Getting Out, Crohnie Style

Growing up I never considered myself a "social butterfly"
Don't get me wrong, I had friends and spent alot of time with them (keep in mind, this was before internet and social media, so we actually went over to other peoples houses, parks, etc) Highschool was the same. You had your friends and you stayed in your clicks, but you all "knew" each other.
After highschool, most went their separate ways, some stayed in touch, others faded away only to reconnect later with Facebook, Instagram, Twitter, etc.
I was diagnosed less than two years out of highschool and immediately lost my girlfriend of 3 years, after my first surgery, because she couldn't handle my illness. You find out real quick who your friends are, through no fault your own.  I don't blame those who faded away but I know I personally wouldnt leave a friend when they are needed the most.  Again, I dont blame anyone because everyone handles things differently.
Crohn's made me a virtual shut in. In a matter of months, I dropped from a healthy athletic 170lbs, to skin and bone 115lbs. Once it took the fat in my body, it ate away at my muscle, I looked anorexic. At one point, asked by a complete stranger if I had AIDS. After that day, I didnt want to go out, I didnt want to be seen. Steroids made me gain weight, but not much. I couldnt maintain weight because the nutrients from food went right through me.
Fast forward to 6 years ago. Remicade changed everything when it came to living with Crohn's.  I started to gain REAL weight and maintain it, but I still didnt feel secure enough to go out.  I go out with my family to enjoy my wife and boys but not far from home. I still feel very insecure.
This week, there was a get together of my highschool friends, some of which I went to elementary school with, and that insecurity kicked in. I'm on social media and put it out there when it comes to my illness but that's to help me and to help others like me. I didn't know if some of these highschool friends knew anything about how my life has been, and is. I knew some did, but not sure how many. Two people we knew in school passed away recently and kind of put things into perspective. If I went, the whole thought of having to explain why I cant stay, or why I cant eat or drink brought a lot of anxiety and stress. I was still debating whether to go or not up until about half an hour before I was to leave. The 15 minute drive to the restaurant was a drive with my heart beating hard and butterflies in my stomach. I sat in the parking lot for at least 10 minutes before getting the courage to go inside. I literally took a deep breathe, grabbed my phone and wallet and said out loud, "fuck it, let's do this".
Four hours later, 100's of memories, lot's of laughs and tears (from laughing).... I'm glad I went.
Basically everyone knew about my condition, no judgement, no pushing me to have a drink or food and some knew others with Crohn's. It will be great to see everyone again one day.
What did I take from this? Life's too short to keep worrying about things I cannot change. I've been told this by many people, many times, including my wife but I think it took the passing of two people my own age, by no fault of their own, to put things into perspective.
So, even though I may never be 100%...ever... through the pain and fatigue, you just have to say,

"fuck it, let's do this"

.



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.

.

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

.

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.

Wednesday, May 16, 2018

World IBD Day is May 19

Many of us know that 19 May 2018 is World IBD Day.

Bringing awareness to IBD, Crohns and Colitis is another step closer to a cure and ending the stigma associated with the disease.

World IBD Day


Friday, May 11, 2018

Crohn's Baby

Wednesday was like any other day. It's my regular day off, went to the gym, ran errands, cleaned around the house, ate dinner and took my son to taekwondo class. 
After dinner though, I started to feel tightness in my abdomen, not out of the ordinary but a little different than normal. It was bad enough that I had to lay down in the car while my son practiced. After getting home and getting ready for bed, the tightness was worse. I took a look in the mirror and there it was....... my Crohn's baby.
My abdomen was so distended and tight, I looked pregnant.  I tried my normal procedures like laying on my stomach in hopes to maybe relieving the pressure by passing gas....didnt work. I tried having bowels movements (as it felt like I had to go)....didnt work.  I was up and down, up and down, up and down from bed to bathroom for hours before I finally had to give in to what was happening to me.
I had a block.
On one of my trips to the bathroom I started throwing up while I sat on the toilet.  That continued throughout the night and into the morning until there was nothing left to throw up. Definitely a block in MY experience.  Not sure how....but there it is.
Now was the question, do I go to hospital? I need my intestines to rest and the best way is with an IV. I decided to stay home and not eat but just drink water and tea and stay in bed to rest. That seemed to work. Later that night, whatever was causing the block, released. I took over 24 hours, but it felt so much better after that.  I am still sore, but the pain is gone.
It's been years since I've had a Crohn's baby, I hope its years more before I have to experience it again.

Tuesday, May 1, 2018

You Might Be A Crohnie...

If you need to rest......from having a rest
...you might be a Crohnie

Sunday, April 29, 2018

All Aboard The Crohn's Train

It's amazing to see how social media has helped people you are in need. 
Take Crohn's Disease, or IBD in general, for example. I was diagnosed 30 years ago in 1988, but like many, I started having symptoms months before and even took different doctors to figure it out.  The doctor that DID figure it out only really knew because he had another patient that was experiencing similar symptoms.  I had never heard of Crohn's and neither had my family or friends and you have to remember, this was BEFORE the world wide web was even out yet.  You couldnt just go online and look it up.  I had to go to the library and research in a book....when I was well enough to get to the library.
Fast forward 30 years and there are web pages, blog pages, vlogs, etc. out there with a ton of information.  Facebook, Twitter, Instagram, etc. help others living with the disease connect talk and share experiences. Many great organizations directly involved with IBD and chronic illnesses, ALL with a keystroke.  It's great. Though, with all this comes the snake oil salesmen who claim they have THE cure for Crohn's.  I hate to tell them but there is no cure until they find the cause.  As many of us have many many different symptoms, there is no one "cure all".  They still have to find the trigger, that's the key, in my opinion.
I remember being feeling so isolated and alone suffering though the pain and embarrassment of the disease. Got strange looks from people because of the drastic weight loss, having been asked by a stranger once if I had AIDS.  Suicide crossed my mind many, many times.
Things I post online, either on this blog or elsewhere, is what MY experience has been.  It might not work for others and if it helps....great!  If not, well thats great too because then you know what NOT to do..... for you.  Many praise certain diets that put them into remission, which again, is great.....for them, but not for me.  Juicing for example.  I can't do juicing as it goes right through me, but for others, they have no problems.  You need to have trial and error t figure it out....for you.
I like to relate it to this...

All of us are riding the "Crohn's Train" heading towards "Cure Town" and each train car is a different symptom of the disease and within that are different levels of severity. 

It makes for a very long and tall train filled with some great people willing to help and support one another.

Wednesday, April 11, 2018

Travelling With Crohn's Disease

We are off on holiday for a week soon, so its time to get ready.
The key to travelling with Crohn's?   PLAN AHEAD
Each of us will have our own things to pack or plan.
First I had to book our travel in between my Remicade infusion and enough time to recover (as I always get tired for a day or two after).  With that done, I needed to make sure I had enough oral meds and in their own bottles with the information clearly marked.  I purchased extra travel insurance for someone with a pre existing condition.
We are renting a vehicle and we put my wife as the registered driver just in case either I have to cancel the trip OR something happens to me while away that I cant drive.
Packing is simple, just the usual items, though I also will pack a bed pad, just in case of an "accident" while sleeping. I'll pack all my underwear, for obvious reasons and add antiseptic cream and my "poo-pourii" spray to my toiletries.
The day of travel, I generally won't eat but drink alot of bottled water ( I can't drink tap water).  I will take  protein bar for the plane ride, but wont really eat anything until on the other side and at the hotel.  For this trip, that will be about 10 hours from the time I get up until we get to the hotel.  It's seems like a long time but I dont feel the hunger.  The thought of what "could" happen overrides the feeling of hunger.  After 30 years of living with Crohn's, I've gotten use to watching others eat while I eat nothing.
During the trip I will be very careful what I eat and drink.  If there is no bottled water, I will drink sparkling water, even though I hate the taste.  I don't drink alcohol so thats not a big problem. Things like Coke etc are mixed with water so I dont drink that unless it come directly from a can or bottle.
Food, I stick to what I know.  If I try something different, I ask alot of questions on what is in or on it.  I avoid dairy, so no cream sauces, etc. and no sour cream so I need to make sure they are not mixed in with the food.
And then do it all again for the trip back home.

Check out Healthline.com for tips on travelling with Crohn's

It would be nice to just go on vacation and not have to worry about anything, but this is the "norm" for me now.


Thursday, April 5, 2018

You Might Be A Crohnie

If you go to the toilet and it's full of blood but it's not from your period....or you're a guy
...you might be a Crohnie

Saturday, March 24, 2018

200,000 Thank You's !!

I noticed today that this blog has surpassed 200,000 page views !!
I can only say, thank you!! 
What started out as a simple page for me to vent a little has turned into something bigger than I could have imagined.
Thanks to all that have visited, contributed, emailed and commented over the years.  Its nice to see that people like what I have to say.  Its also nice to know that I may have helped a little in their journey with Crohn's, Colitis and IBD in general.
I enjoy sharing my thoughts, ideas, art and humor (sarcastic as it may be).  I am still working on a book and my venture into vlogging with my "You Might Be A Crohnie".  We'll see.

This is one of the times I am a loss for words.  I am grateful and humbled by all the people that have stopped by for a visit.

Thank you.

.

Wednesday, March 21, 2018

Crohn's Can Be Cruel

I am finding lately that I am able to DO more than I have for a while.
This, of course, is great!  I put it down to Remicade, new vitamins and light workouts (mainly core).  So naturally I want to do things around the house, outside, etc.  Last weekend was great weather.  Sun was out, highs of 15 C, the family and I were outside cleaning out "crap" from our shed and garage and had some fascia boards to paint.  Sucking up all that Vitamin D from the sun felt good.
But, Crohn's can be very cruel.  I was doing so much, that for awhile I forgot about being "sick".  That was.....until a few hours later when, BAM! Crohn's shuts that feel good door right in my face.  I started to feel like I just ran a marathon.  My mouth was dry (dehydrated), aches and pains in arms, legs and back and I felt like I could sleep for a month.  I kept yawning and stretching over and over again, so my brain was tired too.  Then after a little while longer, nausea set in. 
The big mistake I did was to lay down because of the nausea.  I did not want to get up. When I tried, it was difficult.  In hind site, I probably should have had a bath with Epsom salts, but that's neither here nor there.
This is something new for me after all these years.  Crohn's feeds me that line with good health as the bait, I just need to be more cautious when I "bite"......

....but who wants to be cautious.

.

Tuesday, March 13, 2018

You Might Be A Crohnie...

If having 20 bowel movements a day.....is a slow day
...you might be a Crohnie
.

Wednesday, March 7, 2018

You Might Be A Crohnie...

If you consider yourself a guinea pig when it comes to figuring out what you can eat day to day
...you might be a Crohnie
.

Friday, March 2, 2018

Remicade : 50th Anniversary

Day 2047 of Remicade (5 years, 7 months and 6 days) and my 50th infusion of this "miracle drug".

For me, anyway.

It's done wonders for my Crohn's symptoms as far as pain, inflammation and weight are concerned, but I still have some peri anal issues to deal with as well as side effects from the medication. Psoriasis on my scalp has been something I have been trying to deal with for almost 2 years now. 
It started as a small patch right at the crown but has spread to the front.  Not so much of the plaque kind anymore, just very dry, itchy and sometimes bumpy.  Along with it comes the loss of hair of course which has been something to get used to.  I have always had thick hair and I still do except it's thinning out on top.  I wouldn't mind it so much if it wasn't so dry and flaky, I could just shave my head....but I can't do that right now.
I am currently trying a mixture of tea tree and coconut oils every couple of days which helps, but not 100% effective.  I think I might need to go back to some kind of steroid, but whatever works, eh?!

Either way....happy Remicade anniversary to me!!

Saturday, February 17, 2018

Multi-Vitamins

I can't even begin to tell you how many multi vitamin brands I've tried over the years.  Too many to count on two hands, let alone one.
They would usually either cause me pain or discomfort, or pain AND discomfort.  So generally I wouldn't take them.  I would take Vitamins B, C, D, E, and the rest of the alphabet....separately and not even all at once.  Some I would take one day, others another day and so on and so on... I almost needed a chart to help me keep track of what I was taking and when.
That was until just about a month ago when my wife asked me to try a multi vitamin she got from our Chinese medicine Dr friend that we now both see.  I try lots of things, so why not.  Not only did I not have any pain or discomfort, I found that it strengthened my hair, nails and even raised my energy....a little...
They are derived from fruit and vegetables....that's it. I'm guessing all the "fillers" that are in the main stream multi vitamins were causing all my problems.
Other than the fatigue all the time and the usual Crohn's related "issues", things seem to be turning in the right direction finally.


Thursday, February 8, 2018

Colonoscopy Superstar

Next time I get either a colonoscopy or sigmoidoscopy, I'm going to have my wife film the aftermath.
Why..?? Because I don't remember anything that either I said or did, or anything anyone said to me.
I always get sedation for any scopes and my gastro makes sure I don't feel a thing.  So much so, what I do or say could make me a YouTube star!
This morning my wife told me all about what happened and I had no idea. Starting with when I came to, she said she had to help me get dressed and cleaned up and when she went to clean off my leg, I put my hands on the wall, spread my legs and said "book em Danno!". Things like that I need to see!! I also was telling her how they didn't want to give me sedation....don't remember.  Also something about if she could avoid speed bumps....yep, don't remember.
The only thing I DO remember, was going into the room, talking with my Dr, they were discussing what meds to give me for sedation, I said "all of them", she gave me the meds, I said "goodnight, make sure I wake up"....... then I was home in bed.  I don't remember anything in between.
Groggy today, but I would LOVE to see video.  I get scopes once a year, so next year I'm going to make sure she gets it so I can become a Crohn's "superstar!!"  LOL

Wednesday, January 31, 2018

You Might Be A Crohnie...

If you can teach your children the alphabet by the different vitamins you take...
...you might be a Crohnie

Monday, January 22, 2018

You Might Be A Crohnie...

If you own just one belt AND have added extra notches not only for weight gain / loss, but also for bloating just throughout the day
...you might be a Crohnie

Thursday, January 18, 2018

Remicade : Day 2003

Quick and easy infusion this time.  The nurse called me at home asking if I wanted to come in early as there was a cancellation, so naturally I took it.  I was the first one in so it was nice and quiet.
Weight up again, to 79.8 kg, which is awesome.  Not only because I look "healthier" but also, if I ever end up in hospital, there's some fat stores the disease can take! LOL

Thursday, January 11, 2018

You Might Be A Crohnie...

If you can look like a slim supermodel in the morning and look pregnant in the evening...
... you might be a Crohnie

Wednesday, January 3, 2018