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.

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

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.

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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.

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You Might Be A Crohnie...

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

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
.

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!!

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.

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

You Might Be A Crohnie...

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