Sunday, September 15, 2013

Get Involved... Make a Difference!

Happy Football Sunday!!! 

I am super excited for today's post, because it is my very first guest post and the cause is extremely important! I really hope you all take a minute to sit, read and really absorb the magnitude of this cause! I greatly appreciate your time here as always and I will be back tomorrow! I am off to watch football and not drink beer... ya I said it. Anyways I am pleased to introduce Stephen who has the immense courage and strength to share his very personal story in hopes of finding a cure of this terrible disease with which he suffers. 

What you didn't want to know about PSC,( Primary Sclerosing Cholangitis.), but learned anyway. 

As if you didn't have enough already in your life to worry about, here I come along wanting to tell you about a rare, incurable disease that affects me and a very tiny percentage of the population. Why bother ? Two reasons. First, you may know someone who has Ulcerative Colitis or Crohn's disease . These two diseases are more common . You might ask, well so what ? Well, hold on for a moment and I will tell you why this is important. This blog is about an area of the body that has some uncomfortable side affects, so if you are currently eating a nice bowl of chili or something tasty, you might want to put it aside to eat later. 

Second reason, if you find yourself interested in this devastating disease , you can CONTRIBUTE to some fundraising. Hah, I can hear you now, "I knew it, this bastard is looking for money". Ugh, ya I am but I want more people to know about this disease and the fact is, drug companies develop drugs based on perceived demand. So today we have  an ample supply of drugs for erectile dysfunction and next to nothing for PSC. According to drug companies, man's need for a good, hard and lengthy erection is more important than saving a few lives every year. Welcome to 2013. 

PSC affects a very small percentage of the population, so small in fact that I bet you have never heard of this disease. PSC is an auto immune disease, which means the body attacks itself. Nobody knows why. What they do know is, if you have or had Ulcerative Colitis, you have a greater chance of developing PSC in your life. The odds are still low but greater than the average person with no history of bowel issues. PSC attacks the liver and the bile ducts, corroding both and wreaking havoc. Currently there is no cure. The most common form of treatment for serious cases is a liver transplant. Regretfully , this is not a cure but it can provide the patient with renewed energy. After the transplant, PSC is not gone. It still lives in the body and can and will attack the new liver. 

Here are a few pictures to give you a visual of the area of the body that I am discussing and how it is affected. 

I personally know a few PSC patients that have had 3 liver transplants. They don't usually do a fourth. It sounds simple, a liver transplant, just lift the lid and pop one in. Well, going through this is horrific, dangerous and very painful. If you haven't signed up for your organs to go to someone if something should happen to you, I encourage you to do so.

If you currently have Ulcerative Colitis or Crohn's disease, I would encourage you to talk to your G.I. specialist about your risks of PSC. It sometimes happens that you have the disease and don't even know it as it lays dormant for years, causing problems that you might chalk up to something like the flu, food poisoning or just some weird bug. You never know.

So here is a basic review of my medical story. I will try to keep it short.

When I was 15, I started to get sick. I had pain in my gut, bad diarrhea, bloody diarrhea some days  rapid weight loss and fatigue. My GP at the time thought I had the flu, so this was the diagnosis we went with. Off I went to summer church camp where I spent the summer working various jobs. I kept getting sicker. I got so bad that if I drank a glass of water, I would head straight to the washroom , sit down and it would come out the other end. All in 60 seconds. I kept on working, not telling anyone but I got so weak I couldn't perform my job. I recall the camp manager getting pissed off at me as he thought I was just lazy. By mid summer I had to go home. My parents were not alive so I lived with my brother and I went back to my GP. He then suspected I had Ulcerative Colitis and booked an appointment with a UC Guru connected with Dalhousie University. He examined me and yes I had the same disease my Father had. By this time I knew it anyway from watching my Father deal with it for decades. So I went on steroids to bring the inflammation in check, (a horrible but necessary treatment sometimes) plus 2 other pills that I took daily. I was sometimes OK  other times, I would have flare ups. I had some lovely tests,  hoses and cameras up my rear end along with other assorted delights. I was 16, in my prime and going to get these tests was humiliating . I had this one test every 6 months where they laid you on a table, on your side, inserted a hose in your anus, shot dye up your colon then they filmed it, all the while trying to hold the liquid in. When I was done, they told me to get off the table and run to the bathroom and let it out. I made it to the little bathroom. As I was vacating the liquid dye, a nurse walks in, looks at me and says, " oh Stephen you forgot your gown" . Could she not have hung on it on the door and knocked without walking right in on me ? This kind of humiliation only got worse over the years. So I lived like this for the next 15 years, 20-30 pills a day, constant monitoring, colonoscopies every 6 months, then every 3 months, then every month or so. During this period, going through high school, I had more than a few bowel incidents, essentially being caught too far away from a washroom and loading my pants. I cringe whenever I look back on those days.

After 15 years or so your odds of getting colon cancer increase, specially since my Father died of it when I was 15. I started to show signs of pre-cancer, then early cancer, so I ended up having a full Colectomy, where they remove the colon, a piece of the small bowel, the rectum, the entire plumbing system ripped out and started wearing an ileostomy bag at age 30. I had 3 major surgeries in 11 months during my 30th year, so there was no celebration on my birthday, that I recall .

Having to wear an ileostmy bag is a huge shock. I recall watching the movie, Dances with Wolves and my wife at the time looks at me and says, " hey hon, your Indian name could be , "He who shits in a bag". In those days we didn't use the current term Native Canadian or whatever we are supposed to say now. During those times, nobody ever ,ever mentioned PSC. It existed but I doubt the Doctors knew anything about it. Just as well, I would have obsessed on it and drove myself crazy.

When I was 50 or so, I started to get sick, specially when I traveled for business. I would get belly pain, I would vomit, fatigue but it would only last a day then I would be fine. I always chalked it up to the flu, bad food, whatever but I never told my Doctor. This went on for years and the episodes got worse. Finally in May of 2012 I was travelling on business in Western Canada and I had the worst episode yet. This time I got severely jaundiced, I mean I was yellow, my pea turned dark, my stools turned grey and I could barely move. This was a full blown Cholangitis attack. As it turned out, my common Liver bile duct was blocked and so bile started leaking out into my skin and the body tried to compensate by excreting bile through the bladder and intestine. I was admitted to the hospital, diagnosed with PSC and had an ERCP, where they put a camera down your throat, into my abdomen and the Doctor can actually enter the bile duct, place a stint and open the blocked duct. The procedure set off a bout of Pancreatitis, a horrible thing to go through but ERCP's can sometimes can cause this too happen . I spent 17 days in the hospital, went home after that and rested up for a week and then I returned to work. In July I had to go for another ERCP, which as it turned out was a bit of a nightmare experience. The patient is always sedated, not totally knocked out but enough that you don't know what's going on. This time for some unknown reason, the sedative didn't work and I lay awake through the entire procedure. Yikes.

So after this second ERCP, the results are sent to a lab to get tested for cancer. The Doctor takes scrapings from the bile ducts. It's routine. A few weeks later I received a call from my G.I. telling me on the phone they found a tumor in my bile duct and it was positive for cancer. Talk about shock ! So after multiple visits, tests, discussions I was scheduled for "Whipple surgery", which is the most complex surgery one can get in the abdomen area. The surgeon opens you up, I mean he cuts you open from side to the other and exposes the gut, then he removes the cancerous bile duct, piece of the liver, stomach, intestine, pancreas, then reconnects you back up where your body literally has to start over and relearn to function normally. I had the surgery in the fall of 2012 and here it is the fall of 2013 and I am still messed up inside. Thank you PSC!

Today I am exhausted most days, am in constant pain, (partly due to adhesion's from multiple surgeries in the same area but that's another story). I can't work. I can't travel. I am afraid to leave the house for more than a few hours. My sweet wife has endured a lot, as a matter of fact at the age of 49, this past February she had a serious heart attack and then a small stroke a month later. It's been one hell of a year!

If you want to go on line and read more about PSC, then I would suggest looking at the Mayo Clinic. Check out this link.

I trust this site for the most accurate information on PSC. The scary part of this disease is cancer, specifically bile duct cancer. It's very hard to detect and if not found early, it's usually a death sentence. I was a very lucky person, mine was found early but I live in fear that it will return.

If you would like to contribute a few dollars, I am currently raising funds for a PSC research group that I belong too. Anything will help. Research dollars are desperately needed. Just click on this link. 

Once you open the site, look to the top left side and click on the link: find a team/ participant. Then type in my name in the little window, Stephen Cox, then search, then click on my name and then you can click on make a donation and go from there. I will get a copy. You cab do it anonymously if you like. No need to give your name. Any and all help will be deeply appreciated.

If I can answer any questions, let Nicole know and we can get in touch.

Thanks so much for taking a few minutes of your day to read about a somewhat depressing subject.

Blessings !


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  1. Thank you for opening my eyes to this condition, thank you for the honesty of what you are going through and wanting to help not only yourself but all who are suffering through this .

    But the biggest thanks is for sharing the video what a moving and beautiful thing . I know from working in charity how hard it is for donations and we are looking for money for totally different causes . But if you gave up one coffee a day you can make a difference . In order to get they say you have to give.


    1. Thanks Wendy. The video is truly moving and powerful. I keep watching it over and over. Thank you too for your positive example of giving, not just with money and material things but with your time and involvement in other people's lives who have needed your help.


  2. Thank you so much for sharing your story! Being so open with your heart and your struggles can be tough, but it truly does help people in the fact they are inspired to share their own stories, and they are motivated to be brave in their own stories as well.

    I'm living with an ultra rare disease as well. I had a kidney transplant 18 years ago. Fundraising is a huge passion of mine. Kudos to you for putting yourself out there and raising funds.

    Much love and many blessings.

    1. Hello happy girl,
      Your comments are much appreciated, specially since you yourself are dealing with a very rare disease. You have a great attitude. Any chronic disease is hard to deal with on a daily basis but rare disease where others are not aware can be even more so. I find it is isolating, so sharing, staying connected with family and friends is so very important.

      I wish you joy in your journey and much success in your fundraising efforts.

      Take care