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.

The demon's egg

Most people have some sort of a love/hate relationship with certain foods.  With IBD those relationships come frequently and often.  For me I've had some long standing ones, some that developed long before developing Ulcerative Colitis.

For me they are few and far between. I love orange soda*, however they are very few I can drink, and even then it's just Fanta that I can drink.  Avocados are similar, except there is no love, only hate.

I've always found avocados inherently creepy.  Visually it looks like a large black leathery egg, if a demon were to hatch from an egg , that egg would look like an avocado. Aside from the visual displeasing nature of its external features,when cut opens it continues to look like an egg.  The seed is presented in a manner that looks like a yolk, and the albumin is represented the squishy green interior. It is basically an egg of demonic standards.

Beyond the appearance they allegedly contain other worldly supernatural culinary abilities.  It is widely believed that if you make guacamole and then place the seed back in the bowl of guac it will magically extend the life of it and it will remain green for an extended period of time**.

That was my reasoning for not eating avocado.  When I was still cooking I joked about it, and even now years later I continue to.

At first I would jokingly not eat avocado, and then I committed to the bit.  It when from passively not eating it to actively avoiding it.  It was no longer about not wanting to eat it, but it became a matter of principle.  Not eating avocado became a lifestyle choice#.

Now here I am approaching surgery, my colon is dying and has never tasted avocado.  I am beginning to reconsider my choices, it's not necessarily that I want to avocado.  I could happily go my life never eating it.  But perhaps that is a selfish choice?

It's a tough decision to make.

Are there recommendations on which form to have it in? A certain dish?

 If I eat it it will be once and only once. Even if I like it will never eat it again.

*I'm also a fan of cherry coke, which is another beverage I can't drink, it gives me wicked heartburn.
**I don't actually believe this any more, although there are legions of chefs and laymen who do.  If anything it's probably because most guacamole recipes contain lime juice or some sort of citrus.  The ascorbic acid is what is probably delaying the oxidation.
#Very similar to not owning an umbrella*# or using heroin##.
*# I also don't own an umbrella, too much of a hassle.
##However I do not use heroin#*
#*Yet^.
^When I say "Yet", I mean eventually I'm going to have to try it^*.
^*I mean when I'm super old and close to death^^.
^^Seriously what else am I going to when I'm 55.
^#There is no reference for this foot note. But the song Prices of the Universe by Queen starts of awesome and half way through it really turns to shit.%
% I'm currently watching season 5 of the Highlander tv series on Netflix, they use the good part of the song for the theme music.

England (at least what I remember).

As you all know my last post was announcing my surgery date, written in an airport lounge a few hours before leaving for England*. The flight was uneventful with the exception of the Indian family who owned the loudly unruly child that refused to stay in her seat during take off.

Now as much as England was a trip to visit the band Drugstore in the recording studio it was also my big trip before my surgery. The secondary purpose was devoted to my colon and liver**.

 On  the first day I wandered around the N1 area, found a SIM, located a pub with wi-fi and made it my base of operations. Eventually after my friend got off of work we went back to her place, I was able to wash up and change and we headed out to meet up with her friends from work.  There was drinking and then headed out for Indian food afterwards. By the time I went to bed on the first night I had been awake for 38 and a half hours.  Once you've been awake for 24 hours you hit a second wind, if you power through it until bed time there is no jet lag the next day.

The next day was spent with a friend that flew in from Dublin, we wandered around the city drinking.

Sunday was my the first day I was able to knock off one of my suggested meals, a couple of entries back  posted a various suggestions from other people with IBD, one of which was a proper English roast.  My friend from Dublin was heading back on the Sunday so while we initially tried to find a pub for breakfast, we ended up getting Sunday Roast.  It was amazing,  My meal was a tiny whole roast chicken, roasted potatoes, vegetables, kale and bread sauce.  It was the greatest meal that I had eaten in awhile.

There is something very different about food products in the UK. I've heard Brits complain about how long it takes for food to get to them because of the EU and how it's trucked in from across Europe, but it always seems to be better quality than here. The one thing I can never get over is how much I love their dairy products.  The milk is better, the cheese is better, even the yoghurt.  I spent the week indulging myself with dairy products##.

The roast I had there did renew my love for kale. I've not had kale in years. I'm not sure how much the mild paranoia of food that surrounds people with IBD has affected my eating habits. Over the past couple of years my diet has become very meat based.; low fibre and very few vegetables. When we went for Indian food, I studied the menu searching for the mildest thing on the menu I fully understand the dietician's concern when I saw her last month. I tend to shy away from roughage, I've never had major issues with it, but I know so many people that do, so I tended to shy away. I still haven't fully resolved where I stand regarding vegetables.  But soon t won't be an issue

When I was writing this entry I was torn about what to write, on one hand I wanted to write about every aspect of the trip.  Instead I'll just leave a list of things.

Pubs (that I recall):
The Famous Cock
The Barrowboy and Banker
The Eagle
The Spread Eagle
The Shakespeare (this place was terrible)

Beers:
All of them, I drank all the beers.

*I was also drinking my weight in gin.
**Mostly the liver in retrospect
#The only place I could find proper coffee was at Starbucks*#
## and copious amounts of alcohol**#
*# The first time I tried to order from Starbucks the guy behind the counter thought I was retarded, the do not have the same selection
**# as well as my beloved chicken and stuffing sandwiches from Marks and Spencer

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.

Suggestions from other people with dodgy tums

About 6 months ago during one of my hospitals stays* this year I decided to join a forum for people with IBD.  doctor's can only answer so much and only from a specific point of view, whereas the people here have lived through and give tips and provide support that medical practitioners can't.

The people on the board have become friends in addition to being a valuable resource. There are people with Crohn's, Colitis, others who have had the same surgery I'm going to have, people how have had the reversal, some people who went back to the bag after the reversal. The experiences shared have been more than helpful.

Some time ago I asked them for their suggestions, I mentioned in my post about Mike McCready that there are a great deal of people with IBD who suggest very simple things. I received suggestions ranging from vague and depending on the mood at the time to very, very specific. I can't share all of them, I won't post those that have suggested seafood**, I was never going to consider those to begin with.

Kelly suggested the hottest wings at Bernie & The Boys in Drumheller, Alberta. Her reasoning is "If the colon's coming out, you might as well push it to its max first".
I've received this from a few people usually with the phrase "make it pay" attached to it.***
TMos in the same vein gave the suggestion of  "Dude, WRECK IT!!! KFC!", this idea was seconded by 2thFairy with a solid "YES!!"#. 




Lucy stated I "should add a good salad along with it... There are so many of us who miss salad and may never eat it again." ##


There are two that stood out the most.


Astra101 had planned an entire evening for me based around my meal, "for your last supper it should be something British traditional like Roast Beef and Yorkshire Puddings, all the veg, gravy, followed by Apple Pie and Custard and a glass of red wine, followed by cheese and crackers, then After Eight mints, then a lie down in front of the telly!"
I can get behind that meal, I might switch out the roast beef for a turkey breast but she's on the right track.


The other one who had a stand out meal was semicolon306. He has gone through pretty much everything and has a permanent ostomy.  What he share wasn't so much a suggestion for me, but what his colon's last meal was. He had people running all around the town for him.
"as soon as I found out I sent the family to all the places I wanted food from

McDonalds fries
Dairy Queen Hamburger, milk shake, and ice cream
Taco Bell chick burrito x 2
KFC for mash potatoes
Burger King for onion rings"

I sympathise with this. During my third hospital stay I started a list in my head of everything I was going to eat.  I had been in the hospital for a week on a liquid diet (my friend Pollie referred to this as my "kill list").  It was very specific.

It was: pierogies  with cheddar cheese, cabbage rolls, red beans and rice from Popeye's and a chicken fried steak.

I rarely eat any of those things, in fact I've only ever eaten chicken fried steak once###.  But for some reason after spending a week living on only boost and gingerale it seemed like the most perfect food in the world.

I still have yet to finish my kill list.

*I now find hospitals to be rather restful, like a mini vacation. Except it doesn't cost me money, and I'm given morphine (over the course of the summer I was able to watch Top Chef Masters, I highly recommend it)
**Sorry Dusty
**A friend suggested that I take my entire "do not eat list" and have that as my final meal to punish it for the last couple of years.
#I was actually in Kentucky about 6 years ago, the KFC does not taste any better there.  And they have all you can eat KFC buffets.  As it turns out all I can eat is not a whole lot of KFC. 
## I went to a dietician yesterday, as it turns out my avoidance of insoluble fibre has lead to an meat heavy diet lacking almost entirely of proper vegetables.
### Specifically the chicken friend steak was from Shanghai Cowgirl

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