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

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