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.

England!

I've been a little silent recently.  There have been major technological issue in my life, my faithful laptop may have died completely this time. it's been chugging along for over years and may have finally given up the ghost.  Then my router died, then my blackberry died. Both router and BB have since bee replaced, however I'm reduced to using my netbook, writing stuff was the reason that I bought it, but It was better when I was using it by choice.

Anyway.

In January I am off to England, specifically London.  Now this moderately ties in with this project due to the reason I am going, it's not my colon's last meal, but it ties in with the blog. I get to that later..

I was there once in 2003,and fell in love with the city.  Two things that always bring back strong and specific memories have been music and food, both very related topics. For me there are very specific memories triggered by tied to that trip. Some things trigger those memories and some memories trigger longing.  I spent an evening celebrating a mid-summer festival with a bunch of Swedish people drinking heavily and eating strawberries on the porch of the hostel I was staying at.  Whenever I hear the song Moving by Supergrass, I'm reminded this one night where one of the guys* staying at the hostel played the song over and over again as we sat drinking with a bunch of people. And every so often  think of how I would go to Marks and Spencer, buy a pint of milk, a bag of salt and pepper crisps and a roast chicken and stuffing sandwich, then find a park somewhere and eat lunch.  It was a good sandwich, not the best sandwich I have ever eaten**, but I would kill for one.  I've tried to recreate it, but it's never the same. Perhaps the location I was in made it taste different, maybe the fact it is completely inaccessible fuels the desire***.  It's hard to say, but if I get there and for whatever reason they are no longer selling them, I'm going to be super pissed.  I'll find a pub and drown my sorrows.

When I started this the first person that I wrote to was Isabel Monteiro of the band Drugstore.  I have long been a fan, and in my musical hierarchy they are in the second tier alongside Radiohead and The Magnetic Fields.  Below Tom Waits, but above Supergrass.

They are heading into the studio to record in January. I'll spare you the details, but for reasons unrelated to this blog or medical conditions, I get to spend  a day at the studio while they record the new album. And that is why I'm heading to London.

*That guy was named "Snoop", because he looked a little bit like the rapper Snoop Dogg, he lived at the hostel and made a living selling pot to American backpackers.

**For the record the best sandwich that I have ever eaten in my life (that I did not personally make), was in June of 2004 when I visited a friend in Kentucky. It is the sausage sub sold by the American east coast based sandwich chain Penn Station. 

***This is most likely the reason why whenever I get back into Canada after being away for  more than a week, I have an unholy desire to eat back bacon+ and consume maple walnut ice cream++.

+this is not entirely true I desire to eat back bacon on a fairly regular basis.

++ The only time I that ever eaten maple walnut ice cream (at least in the past decade) has been in the first 2 days in Canada after getting back from a trip#.

#Does any one know how to create proper footnotes using Blogger? I'm tried of using random symbols.

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

In excellent shape for a man in his fifties

Yesterday I got the results from my physical last month.  I was half expecting to be told I was in excellent condition for man 20 years my senior.  I was pleasently suprised to find out that aside from the UC, I'm in fairly good condition.  Blood pressure is normal, no sign of diabetes , cholesterol is a bit on the high side, but you can't win them all.   Now I was expecting the worst, but for a tubby 30 year old smoker who lives a fairly sedentary lifestyle, I really got the best outcome possible.

Between the end of May and the end of August, I was in really rough shape.  I was admitted to the hospital once a month, each stay for roughly a week. All related to my colon in some way.  In that period of time, I've had my medication upped twice, blood clots in both legs, 3 blood transfusions, a massive flare-up and serum sickness from a new medication they tried me on (every major joint in my body seized up)*.  Anyway work grew paranoid, and decided that over the summer I was placing my job before my health and they thought I was going to die on them (presumably sitting at my desk running a report on market share).  So my first day back after the last hospital stay, I was pulled aside by my director and told me that he, the VP and President of the company talked and were placing me on reduced hours for the next 3 months.  So effective immediately I was only allowed to come into the office two days a week, and was not allowed to log in from home.  That was the beginning of September, at the end of this month I go back to work full time.

So as I write this I am sitting in a dive bar eating breakfast**.  It's actually closer to 1pm, so you could call it lunch.  The place is called Sneaky Dee's.  It's a dank, grungey Tex-Mex bar. The tables and walls are covered in graffitti, the booths have skeletons painted on the seats where people would sit.  The food isn't great, it's decent but it's cheap and plentiful.  I live about 2 blocks from this place and it is my favourite bar in the city.  The place is always packed and I dare you to find a bar where you can get a massive nacho platter and 3 pitchers for less than $45.

For years I have passed by this place and there is a sign on the window advertising a breakfast special. Two eggs, bacon, potatoes and toast for $3.25, Monday to Friday 11am to 4pm.  Now I have been passing myself off as a productive member of society for quite some time now, as such managed to find a big boy job that I still don't think I'm qualified for. So I've never been able to partake.  Today (being one of my many days that I don't work) I rolled out of bed at the crack of noon, and after looking in the fridge and finding only beverages, condiments  and the building blocks of food, I decided today would be the day that I take advantage of the special (with a coffee and tax it's less than $5.50).
With Ulcerative Colitis and Crohn's Disease everyone has certain foods that cause flare ups and massive pain when they eat them.  Why do I bring this up?  Well this place is referred to by many names, one of them is Sneaky Disease.  One of reasons why I love this place is the same reason  that some people hate it.  It's dank, dark, grungey and really it looks like you could get food poisioning by walking past  the bar.  I have a senstive digestive tract for obvious reasons.  There are some brands of soda that I can't drink without it causing massive pain***, but I know that no matter what I order here it will not cause issues.  For me it's a safe place.

* Did you know that there are drugs stonger than morphine, but weaker than heroin?  Well there are, and I was on them (it was wonderful).
** Using WordPad and lamenting the fact that people now know how to make their WiFi password protected.
***Oh Tahiti Treat, I miss you  so much.

Why I'm doing this

I realised that this blog will take some time to get rolling, and I'm going to need to do something to keep everyone interested until the suggestions start rolling in. So I decided that I should write a bit more about the motivations behind this project.  And forgive me as it may get a bit long winded.
I turned 30 last week (Thursday to be exact) and last night was the party for it, thankfully I was not hungover this morning.  Now when talking with a friend of mine I found out that he thought that what I was searching for was going to be my last proper meal ever.  This is not the case,  this search is for the "last meal" that will go through my colon. I'll have the surgery, they'll take out the colon, and in return I'll have bag on the outside of my body doing most of what the colon was supposed to. It'll take some time, but in theory within a few months after the surgery I will be able to properly eat a meal. There will be a period where I will be going through a liquid only diet, a bland diet, a low fibre/low impact diet and in time I'll go back to solid foods and proper meals. I'll still have a bag attached to my stomach for when my body is done with said meal (there is no real delicate way to put it).

So if the change to what I can eat is only temporary, then why am I doing this?

 For me Ulcerative Colitis has been a disease of "whens" not "ifs".  I've been on two drugs almost the entire time, Salofalk and Prednisone. We have tried other courses of action. Last year I was on a drug called Imuran, which put me in the hospital as the drug caused me to develop Pancreatitis.  A  couple of months ago I was on Remicade, the first dose of this drug gave me Serum Sickness, when we tried it again I went in anaphylaxis. With the failure of both medications it leaves me with Prednisone.  And Prednisone is not a pretty drug.
 Let's say I attempt to stay on Prednisone and I manage to keep the disease under control and my colon lasts another 10-15 years, I will develop diabetes and osteoporosis from the long term use of Prednisone. During this period the risk of me developing colon cancer shoots up dramatically, and my colon would get removed due to cancer. If I stay the course I'm on now, and continue with my medication regime.  My medical life become a series of "whens".  "When will I develop diabetes?". "When will I develop osteoporosis?".  "When will I develop cancer?".  And after all of that I will still each the inevitable "When will they remove my colon?".  Ultimately this is my choice in the end.

There is a difference between knowing something is going to happen and being ready for it, and quite simply I'm not ready for it.  Which is why this blog and my search for this "Last Meal" exists, it's a form of therapy to help get me to that point.

 When I was a kid I wanted to be a chef. And in the end I got there, I worked in restaurants, I graduated from culinary school. But I realised it wasn't the being a chef that I was in love with it was food and cooking. In fact working in a kitchen made me miserable. Except for the first restaurant that I got a job at.

I remember being in high school and working as a dishwasher in a small restaurant. And at the end of the night I had to sweep and mop the kitchen.  But at the end of the night there was a specific smell, it was a mix of all of the herbs and spices that the Chef used that would accumulate on the floor, and in sweeping them up they would mix together and fill the air. That would have been 13-14 years ago. A couple of years ago I went into small grocery store and I can't explain it but as I was walking through the store there was the exact same smell in the air, and I was flooded with memories. The wait staff that was there, specific CDs that the chef would play when it got busy. The restaurant doesn't exist anymore, and that makes me a little sad, as they were like family and not only did it mark a period in my life, but it helped me define who I am today. There are dishes and sauces that I learned there that I still make from time to time, and when I do that it's the same rush of memories and feelings.
What I'm trying to say is that with food there are memories, the two are forever linked.  This blog is as much about the emotions and stories that are tied with food, as it is about the food itself. So I don't just want to know what I should have, but I want to know why I should have it.  And it doesn't necessarily need to be realistic.  If you were on road trip and you stopped at a diner in Kentucky and ordered a burger, and that the burger was the greatest burger you had ever eaten. I want to know where it was, I want to know what made that burger awesome, but most of all I want to know the story that lead you to that burger, and why you think I should go track that burger down.

Write me, tell me what I should eat and why.
And if any of you know Belle & Sebastian, I sent them a request through their website, tell them to check their mail.
Thanks
Jason
TheLastSupperProject@gmail.com

So another glass And a cigarette . . . Isabel Monteiro from Drugstore

Drugstore is a band I fell in love with. I bought their second album "White Magic For Lovers", based solely on a 3 second clip of music that I had heard in a commercial for HMV.  That album stayed in heavy rotation until Songs For The Jet Set came out. From there I tracked down a copy of the then out of print self titled first album.  

Drugstore, who took their name from the film Drugstore Cowboy, is a London based band with a multinational cast of characters led by the wonderfully talented Brazilian born Isabel Monteiro.  After their third album Songs For The Jet Set, and much to my disappointment, they went on a hiatus of sorts and seemed to disappear from the musical landscape. 

Things were quiet for 7 years, and then in 2009 there were rumblings from The Cave, and Isabel popped her head out.    That year saw a reunion in the form of a sell out gig at Dingwalls in London.  That reunion wasn't enough for the fans or Isabel.  The start of 2010 saw a search for new "Cowboys" to join Drugstore, and shortly after that another sell out gig at the ICA . 

As of right now Isabel and her crew are in the midst of recording a new album.  Which I and many other fans are eagerly awaiting.  I personally recommend the songs "I Wanna Love You Like A Man" and "I Know I Could" (from which the title of this post is taken from).

Isabel is not only the first contributor to my quest, but happens to also be the first person I wrote to.  Which seemed like a very good sign, so far I'm batting 1000.  Isabel keeps an online presence through Facebook, Twitter and her blog, Drugstore Anatomy. Visit them all.

The recipe is called Brigadeiro, it's a Brazilian dessert and just looking at the ingredients make me want it. Once I have pictures of the process and the final product I'll post them.

Isabel wrote:
"Sending you a super-basic recipe for a traditional brazilian sweet treat.
It's prob the 1st thing you learn as a kid, but it stays w/ you forever.
Every now and again, when I'm feeling cold and grey, I get a tin of condensed
milk and make a batch of 'Brigadeiro' - takes me right back to my childhood.
Hope you'll enjoy it. Maybe serve after meal, w/ coffee and liquors?
Recipe attached.
Hope everything's gonna be cool w/ you.
keep me posted.
love
x
isabel"

The closest thing I have to a liqueur in my house is a bottle of Jameson's, that should work. The recipe is as follows.

‘Brigadeiro’ (brigadier)

Recipe

Ingredients:

1 tin sweetened condensed milk

100g of dark chocolate

25 of butter (2 tablespoons )

Chocolate sprinkles or granulated sugar

Tiny paper candy cups

Method:

Combine first three ingredients in a heavy pot and stir constantly

over medium heat, bringing to a boil.

Continue stirring until mixture thickens enough to coat the bottom

of the pan.

Remove from heat and carefully scoop hot mixture out of pot into a

separate bowl to cool.

Cool completely.

Coat hands with butter and scoop out a tablespoon sized amount

into the palm of your hand. Roll into a small ball, roll the ball in

sprinkles or sugar and let rest in paper cup.

Makes about 40. 

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