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 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 might be a Crohnie