Michael Seres – The Man With Olympic Sized Guts

The morning after my first bowel resection over 21 years ago, I was lying in bed still woozy from anesthetic. A troop of white coated doctors entered the room and surrounded my bed. It was my surgical team.

The lead resident was filling me in on how successful the operation was, how much bowel was removed, when he added, “Oh, by the way, while we were in there we removed your appendix too.”

He was much too casual about taking one of my body parts. I panicked momentarily, groping myself between my legs to make sure the surgeons hadn’t got carried away “while they were in there”!

I’ve learned to live with the consequences of those missing lengths for a couple of decades. I know I’ve been lucky. There are people in far worse condition than me. Then 5 days ago I came across Michael Seres online.

Michael didn’t just have a bowel resection. After years of chronic Crohn’s disease his bowel completely collapsed. A resection wasn’t going to do the trick. He needed a whole new bowel and was slated to be one of the very first people in the UK to undergo a bowel transplant.

The transplant took place in October, 2011. It [...] continue the story

Patient Stories at The Fringe

Two weeks ago we shared news on two patient storytelling events that will take place during this year’s Toronto Fringe Festival.

After a more thorough review of the festival’s listings, we’re pleased to announce that we found three (3) more. With the Fringe opening it’s doors tomorrow we felt it was an appropriate time to list all of the patient performances, whether chronic illness plays a starring role or is simply an undercurrent to the performance’s plot. Healing Through Theatre Host: Brian G. Smith (Second City Alumni) Panel: Zal Press (Patient Commando),  Dr. Jeremy Rezmovitz (Sunnybrook Hospital), Daniel Stolfi (Cancer Can’t Dance Like This)

Eat Poo Love  By: Paul Clement, Evan Mackay, Dan Mackay Cast: Dan Mackay, Evan Mackay, Paul Clement

Paul Clement survived Stage 2 Colon Cancer and went on to blog about it (selected blogs available here), and eventually co-wrote a stage version of the blog which will be performed at the 2012 Toronto Fringe Festival as “Eat, Poo, Love”.  He recently appeared on the RogersTV program ‘daytime Peel’ to discuss his journey through the illness, and his fundraising work with Colon Cancer Canada.

Mum And The Big C By: Lynne Kamm

Stamped: A Story About Daniel, Who Happens to Have Autism By: Sarah Magni

21 Days By: Tabia Lau, Music by Mary Lougheed

If you know of patient performances that we have [...] continue the story

Pumping up the volume on patient voices | Health Council of Canada

Originally posted on the Health Council of Canada Blog.

Patient Commando Executive Director Zal Press writes a guest column for the Health Council of Canada blog as part of the release of the Health Council of Canada report  “How do Sicker Canadians with Chronic Disease Rate the Health Care System? ” Get the report here and watch their patient story video – a familiar face included.

 

I’m taking a biologic for Crohn’s disease. And I’m a lucky guy – my $30,000 annual tab is picked up by my wife’s benefit plan. But in five years, when I hit 65, we’ll be off her plan and I’ll be transferred to the Ontario Drug Benefit Plan.

I’m already fretting over what that future will bring. Will the continued financial strain on the health system foreclose on my access to this medication, and instead force a body-altering operation because it will cost the system less in the short run?

And will this decision be made by a cost-benefit analyst rather than by a collaborative agreement between me and my doctors?

US insurance companies have required multiple step therapies before approving many biologics, resulting in multi-year delays. In Ontario, the Exceptional Access Program has fallen behind in processing applications. The population [...] continue the story