Being a fan of the "Eco Challenge" of days gone by, I have always wanted to do an adventure race. My main motivation was wanting to be fit and healthy enough to do something that physically challenging. While not of the same scope as "Eco Challenge" when the opportunity to take part in the 2009 series of MOMAR - the Mind Over Mountain Adventure Race - I took it.
I started my journey towards MOMAR Cumberland - September 26, 2009 - in early May with an opportunity through my employer Coast Mountain Sports. CMS was the title sponsor for the 2009 series and gave 18 employees the chance to do a race. I signed up and was accepted - then the search for a race partner and the start of a training regime began.
First, some background to bring you up to speed.
I am not an athlete. With the exception of sports days I participated in back in the late 1800's when I was in elementary school and phys ed classes in senior high school, I was not an athlete. I was never a runner, didn't play team sports in school. My thing was horses so if the sport didn't have equines involved it did not exist in my universe.
I was a "heavy" kid - you know that "big boned" kid who wasn't obese but wasn't slim either, well, that was me. I didn't trim down until after high school and that was more through luck and dietary changes than through any massive exercise regimen - did I mention I am not an athlete?
A diagnosis of Ulcerative Colitis and then a diagnosis of Ankylosing Spondylitis at the ripe old age of 27ish meant my primary means of exercise was running to the toilet, worrying about colorectal cancer and sitting in doctor's offices, going to physiotherapists, occupational therapists...you get the point. I fought UC for 10 years - it never really went into remission so I was always symptomatic and always losing blood. In February 2001 this nearly ended it all for me as I was admitted to hospital with a hemoglobin count of 57 - it was supposed to be somewhere between 130 and 160 and mine was 57. Severe anemia caused by blood loss caused by UC.
I was hospitalized in an attempt to stabilize the UC and then "scoped" to determine how bad it really was. It was really bad - my entire large intestine was involved, a term called "pancolitis" and it had to come out in order to save me. To make matters worse, the IV I was given during the "scoping" procedure possibly caused a blood clot to form in my right arm - brachial vein thrombosis - from my elbow to my shoulder and about to break off to my lungs by the time I was evaluated by a specialist. While rare, it can happen after an IV if a patient is severely anemic, very dehydrated and very very sick with UC. Like I was.
Problem. I was bleeding out of one end of my anatomy and clotting at another. In order to treat the clot, doctors normally give patients medications that thin the blood, that "bust up" the clot. Problem. I was bleeding out of one end of my anatomy and any treatments for the clot would have me bleed out and die. My large intestine had to go in order to give me meds to treat the clot.
After 10 years of fighting UC I was so ready to be over and done with it I was relieved when the surgeon said they were going to remove my large intestine. Finally, I thought, I'd be "healthy" and get strong and be able to be active and not be chained to toilet facilities and be rid of the pain of UC. It is a very painful disease.
In April 2001 I became an ileostomate. Several weeks after surgery I experienced a life-threatening post-operative complication called a volvulus which killed off approximately a foot of my small intestine and resulted in emergency surgery to save my life. In January 2002 I had another round of surgery to make me a permanent ileostomate, revise the stoma created during the surgery to deal with the volvulus and to remove an internal abscess. Between those two surgeries I dealt with recurring abscesses, sepsis, early stage renal failure, issues from being on a "blood thinner" to heal the clot, post-traumatic stress disorder, and on and on and on.
I will wear an ostomy appliance for the rest of my life.
In November 2006 I had another round of surgery to excise an abscess that formed in my pelvic cavity possibly due to an internal stitch from the 2002 surgery becoming infected and forming a sinus (a cavity). I'll spare you the details of where but will tell you it was so painful I could not sit and was on the maximum dose of T3's and still in pain. Four days in hospital post op on morphine and T3's and then three months with a surgical drain to clear the abscess and finally life goes on.
So, what does it mean to be an ileostomate, you may ask? Well, it means I am alive, which is the most important fact of all. It means I no longer deal with the pain of UC, which is great. It means I have to be very careful to avoid dehydration and have to be very careful to make sure I am maintaining my electrolytes. Why? Well, most people think the large intestine has only one real job. While that may be it's main job, it also is responsible for reabsorbing water/fluids from "waste" materials and for reabsorbing electrolytes. While your small intestine does adapt to a certain extent, it does not replace the full function of the colon so fluid and electrolyte loss is a key concern. This is even more critical in patients like myself who have had a blood clot and who have been through early stage kidney failure - get dehydrated enough and either or both of those could happen again.
What else does it mean to be an ileostomate? It means I have to be careful and conscious about what I eat. I have a different waste removal system than you do. My "waste" is collected in a bag stuck to my abdomen and everything that goes into that bag does so through a small hole in my abdominal wall. So if I don't chew my food thoroughly it can get stuck. If I eat really high fiber foods the undigested fiber can get stuck. If I eat popcorn the kernels can get stuck. Getting stuck means small bowel obstruction which means trip to the ER and a LOT of pain. I experienced this due to post-op swelling and it is absolutely painful and frightening. I tend to avoid this. If I don't drink enough water to help food move through my small intestine it can get stuck.
There is a whole new food chemistry one learns as an ileostomate. Some foods cause watery output (output being the technical ileostomate term for "waste") some foods thicken output, some foods cause odor, some foods cause gas and make your appliance balloon like a life preserver, and each ileostomate has to experiment and see what does what.
And then there is the whole appliance issue. It's a bag attached to my abdomen. Fear number one, the bag falls off and I end up covered in "output"/"waste"/crap. Fear number two, I am not able to empty the bag often enough or soon enough and the seal blows and I end up covered in "output"/"waste"/crap. Fear number three, people can tell I wear an appliance (which is unrealistic but one does develop body image issues when one has been subjected to ostomy surgery and every ostomate must work through these issues at some point or another.) Fear number four, I will never find a soul mate (again unrealistic but I'm allowed those fears.) Fear number five, after several years, many manufacturers and a lot of trial and error, the type of pouching system that I use that works and that gives me good wear time will be discontinued.
So, you ask, does being an ileostomate mean you can't camp/hike/run/race/bike ride/ horseback ride/trek/travel/kayak/canoe/portage/play/insert your favourite activity here? Absolutely not! I have to be careful lifting heavy items - 25 pounds is a rough limit due to the number of times my abdominal muscles have been cut and the risk of hernia that causes - but otherwise I can do whatever I want. I just have to make sure to drink clean water, eat clean food and maintain my electrolytes.
The world is mine.
And the way I look at it, I "lost" close to 15 years dealing with UC and issues related to UC. It's time to catch up on those 15 years. This is why I'm an adventure racer - because I can be one.
This is also why I created this blog. Having an ileostomy is a life-long learning experience. Food, activities, particularly if you factor in training and competing in things like adventure races. How do I eat for a race? How do I eat during a race? How do I eat after a race? How do I keep my appliance on during a long exertion like an adventure race? These things I will learn, and many more, and I will share that learning so somewhere out there another ileostomate doesn't have to start from scratch like I did.
Next post, a wrap up of my MOMAR Cumberland 2009 experience.
See you on the trails,
Barb
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