SO about the surgery date. . .

On Monday I had my pre-surgery appointment.
It was magical, they drew blood. poked at my stomach, took medical history.  They also drew a lovely black spot on my tum. They then covered it with a weird medical tape and told me if the tape falls off and it starts to fade, that I need to draw over top of it.

They also informed me that my surgery has moved.  Instead of it being next Friday, it's now on Tuesday.  Which means I am really running out of time.  I had planned for a leisurely weekend full of gluttony, alcoholism and general debauchery. Followed by a couple days of recovery, and then the last meal, and then surgery.

Now it is all fucked up, because they needed my slot for someone else*. It's not like I'm calling a restaurant for a last minute reservation, I booked this shit back in February.  My wonderful room mate has agreed to run around buying stuff for me, provided that I make a list**.

I need to figure out what the last solid food to go through my colon is. If I'm lucky I'll have an epiphany in a drunken haze and figured out what it will be#*.


*With that said it is for a cancer patient, but I need to assume that there are other patients who aren't as prepared as me.
** I cant make lists, I blank out every morning when I buy my standard breakfast of poptarts milk and cigarettes and the variety store#.
#Because I care about nutrition
#*As opposed to the last time I was in a drunken haze a long time ago^ and had a conversation with my mother, she called the following week and I had no recollection of the conversation ever taking place.
^By "a long time ago" I mean last week.

To reattach or not to reattach?

I have the day off, normally I'd head out and grab breakfast, but not today. Today is prep day.  Tomorrow I have an unpleasant procedure scheduled that involves cameras, I won't go any further that than that in the description.  The key issue is I'm not allowed to eat, in fact I've not eaten since Monday night.  I've been on a clear fluid diet for all of yesterday and today.  It's no so bad, as long as you keep drinking you don't really get hungry.  The issue is really about the energy level.  There is no protein, no fat. So while there is a fire going, it's as if I'm just dumping piles of hay on it.  It doesn't last, it just burns really quick.

Now whenever I find myself in situations where I am not allowed eating, I tend to think about food.  Not so much "oh I'm hungry, I wish I could eat", but more along the lines of  "Man, when this is over, I'm getting chicken fried steak*". But quite frankly what I'm going to have for dinner tomorrow after the scope is not the topic at hand.

I've started thinking about what I will do after the surgery**.  More specifically, I've been thinking about the reconnection.

Now this surgery might be the first of upwards of 3surgeries. Specifically only the first one is required, the one where they remove my dying colon.  The following surgery(s) are for the sole purpose of reconstructing the the remaining segments of the digestive tract to create an internal reservoir to negate the need for an external pouch.  I've decided that I'll already delay the second surgery for at least a year. In theory I can get everything done in the span of a year.

I've been sick for awhile, not nearly as long as some people, but enough to really reflect on all of this.  It started in the summer of  2008.  I spent several months suffering from pneumonia and bronchitis.  that caused me to quit smoking. Apparently the smoking was the only thing keeping the Colitis at bay. The summer 2009, I was flaring they tried new medication which gave me pancreatitis.  Last year was the summer of hospitals.  this year will be the summer of surgery. I don't want to do another year of surgery.

Now from what I've read, stories of people who have an ostomy. Dealing with it becomes second nature, changing the bag, emptying it etc.  Whereas with the reconnection I will have to go to the washroom 10 times a day. It is basically like being in a flare, except no pain, and I'm not limited in what I can eat. There are also a great deal of stories about people that have had surgery to get the bag reattached because they couldn't handle the changes.

I'm undecided. I'll give it at least a year.  I might even wait two so that I can have at least one summer where I don't visit the hospital.  Maybe go back to Cuba.

I don't know yet.

*I've decided to make the "chicken fried steak" a recurring theme.
**I've also been thinking about how I can gain access to baby goats, so that I can lay with them and feed them tin cans.

Good Night Sweet Prince

For the remainder of this post, please play the song "The Final Countdown" by Europe

So the date has been set.  June 24th 2011.  I'm not sure how I feel about it. On one hand it was inevitable, I've know it was coming for some time now.  But it was always sometime in the future, it was intangible, but now it's defined.  The there is a definitive point in my life where I will no longer have a colon.

In addition to searching for my colon's "last meal", I plan on eating en masse, not particularly mass amounts of food, but with friends, large groups of them. Food by itself is just something to eat, to doesn't become a meal unless you enjoy it with others***.

Last Saturday I was at a bar with a couple of friends, and after I told them the date one of them said something along the lines of "There it is, you have five months of feasting".  As I write this* I'm currently sitting in an airport lounge drinking free alcohol and eating mediocre food.** And it's true there is five months left for my colon to experience all that it can.

*I had planned on writing this post a couple of days ago, when it would have actually been 5 months of feasting, but technical difficulties have plagued my connection, i think it's my router.
**While technically not free, I paid $30 to get in, I have 3 hours to kill as my flight to England was delayed, I figured it's either pay a lot of money for okay food, or pay slightly more for okay food and an open bar#.
***By "enjoy it with others" I mean a massive party which will be considered a failure unless some get alcohol poisoning. Everyone is in invited##
#I know for a fact I can drink $30 in 3 hours.
## Everyone except Scott+ (that guys' a dick)
+ Specifically Scott Campbell of Mississauga^
^A group of us were at the Artful Dodger@ for my birthday party 4 years ago, while I was out smoking that asshole made some racists comments, almost got into a fight, and then left leaving me with his bar tab.
@I really recommend the Artful Dodger as a location for a birthday gathering.

Basic, Simple and Healthy . . . Mike McCready from Pearl Jam

So when I came up with the idea for this blog, one of the people who I wanted to get in contact with is Mike McCready, the lead guitarist for Pearl Jam.  I've always like Pearl Jam, I guess it's ingrained guys who grew up in the 90's.
In 1993 I would have been in grade 7 or 8, and one day I found a grey unmarked cassette tape.  It was mix tape that someone had made, and dropped in the school, and being curious I kept it and played it when I got home. From what I recall there were only two songs that stood out*, Cannonball by the Breeders and Daughter by Pearl Jam. I'm not sure if it's the song itself or because that song was my first taste, but to this day it is my favourite song by Pearl Jam.

Now beyond being in Pearl Jam, there is a specific reason that I wanted to hear from Mike, and that is because he has Crohn's Disease, the meaner brother of Ulcerative Colitis. The main difference between the two is UC is specifically contained in the colon, whereas Crohn's can attack anywhere in the digestive tract.

Mike has been using a couple of methods to control Crohn's, through medication and by following the Specific Carb Diet. Unfortunately SCD didn't really do much for me, but there are lots of people that has helped, (there is a chance that I didn't give it long enough).  The diet is very strict in terms of what you can eat, take a look at the legal/illegal list.

So I sent an e-mail to his management company and ask them to pass it on, which they did and the next day I had a response.

Mike wrote:
"Jason,  First of all have you tried Humira? It might be something to look into before surgery. I am obviously not a doctor, but there are many options out there. I would suggest something that will make you feel good about your body. Maybe fish with rice and a vegetable? Take care, Mike

Yes it's short, but I've noticed a trend when I've asked people for suggestions. They seem to fall into three groups**.
The first recommends that generally have the term "the hottest you can find" attached to the description.  The idea behind that has been to make my colon "pay" for the last couple of years.
The second very often recommends something extravagant.  either it's decadent, complicated or very unhealthy.
The third group seems to recommend  something that is healthy in some way, either physically nourishing or nourishing to the soul.

The majority of people I've talked to with Crohn's give suggestions that fall into the third category.  I'm not sure if it's because of the strained relationship that Crohn's patients have with food, but it seems very likely.  Most of those suggestions involve some sort of food that they themselves can't eat.  Having a salad comes up a lot.  Salads as healthy as they may seem are big no no for a lot of people with IBD.  There will be another post in the near future where I share those suggestions.

Now Humira,  the medication Mike is on, was something that I was looking into, but like Remicade it is an expensive medication.  To get on Remicade I had to apply for Gov't assistance to help pay for it.  Unfortunately in Ontario, the provincial gov't thinks that surgery is a far better option than Humira, as such they will not help pay for Humira for people with Ulcerative Colitis, so unless I win the lottery I'm out of luck.

Normally I'd try to give a set of links on how you can cyberstalk the person who helped out with a suggestion, but I can't seem to find much of an online presence for Mike.  So in addition to the link for the Pearl Jam site, I'm providing links to a few other sites that you should look into supporting.

The official Pearl Jam site is here.

I also recommend checking out the following links:
Advocacy For Patients With Chronic Illness
The Crohn's and Colitis Foundation of Canada
The Crohn's & Colitis Foundation of America
The National Association for Crohn's and Colitis (UK)

 *The reason can say only two stood out, is because here we are 17 years later, and I can only remember those two songs.
**There is actually a fourth group, and they are people who have had the same surgery I'm going to have. That response seems to be "It doesn't matter, once you have the surgery you'll be able to eat whatever you want".

Jason

By This Time Next Year. . .

By this time next year I will no longer have a colon.

My name is Jason, and I'm 30 in a couple of days.  I suffer from a disease called Ulcerative Colitis which is a form of IBD.  I will spare you all the details of the disease (they aren't pretty), but if you want to know more check Wikipedia.

I was diagnosed in November of 2008 and in the past two years I have exhausted all medical options.  The next step is surgery to remove my colon. Now despite the fact my colon doesn't exactly work all that well I have grown attached to it.  As such I have decided that I want to give it a "last meal" of sorts, however I have no clue what that will be.

I've decided to seek the advice of others, which is the point of this blog.  I will be writing to people that I think are awesome (musicians, chefs, authors etc.) and ask them for suggestions.  I'm hoping that over the coming weeks and months I will be able to fill this with suggestions, stories, picture and hopefully recipes.

Thanks

Jason