Fishing with Christian

Many of us live with an Ostomy or Intestinal Disease, and sometimes feel we have been unfairly short-changed with our lives.  I am inspired by a young boy who lives with Diabetes and shows an unwavering positive attitude toward his own life. 

I spent 5 days with my great-nephew Christian, and am amazed at his maturity, acceptance, and attitude.  Christian is just 11 years old.  He was diagnosed with Type 1 Diabetes at age 7, and will live with that disease for the rest of his life (barring a miracle cure).

Five times every day, Christian will prick his finger to draw blood, then test his blood on an electronic device to measure his insulin level, then determine how many grams of carbohydrates he will eat, then calculate his insulin requirements, then self-inject the insulin.  At 3am every night, Christian must wake to test his insulin levels. Christian listens to his own body, and recognizes, understands, and deals with his body’s reactions to ‘going low’ and ‘going high’.  Going low (on insulin levels) means confusion, lack of coordination, unconsciousness, and vomiting.  Going high (on insulin levels) means shakiness, anxiety, and nausea.   Going really low or really high can cause blindness, coma, or death.  Christian is so fortunate to have very supportive parents, and 3 very understanding brothers. 

This a lot to deal with, especially for an 11 year old boy.

Christian carries some heavy baggage.  He never goes anywhere without his regular and emergency diabetic kit.  Mid-stream in activities, between hockey periods, football half-times, or during a school exam everything is put on hold while Christian tests and adjusts his insulin levels, consumes some sugar, then the activities resume.  Sometimes Dad and 3 brothers go together to an event, and Christian stays at home.  At birthday parties, Christian forgoes treats.   Yet Christian doesn’t complain … he just accepts it, and lives with it.

Christian is a gifted athlete, and excels at soccer, hockey, and downhill skiing.    He is a leader (QuarterBack on his football team) and popular at school.  Extreme activity drives insulin levels high, and a side-effect is involuntarily urination to dispose of the excess insulin – somewhat inconvenient while playing hockey or carving moguls on the ski hill.  But Christian lives with it, and remains aggressively active.

Spending 5 days at our remote northern lake cabin carries some risks for Christian, as nearest emergency medical services is a long boat-ride and several hours away.  But the rewards for this young boy to catch a lot of fish, was so worth it.

[ No fish were hurt –all were ‘catch and release’ ]

I understand that diabetes is off-topic for many readers focused on an ostomy or an intestinal disease.  But I saw a remarkable and consistent demonstration of character and enthusiasm by a young boy, just 11 years old.  Perhaps we can all learn something from Christian.

Christian will be watching for comments.  You can post your comment below.

1938: Mabel’s Ostomy

My Grandma Mabel had ostomy surgery in 1938, and was sent home with no ostomy equipment.  

How did she cope?  How did she live with her ostomy?    I have tried to re-create her experience.

Grandma Mabel, 2 years after ostomy surgery

Living Contently, Without Ostomy equipment

Lets try to imagine 1938,

… and imagine living with an ostomy in 1938.

This was before the internet, before cellphones, before microwaves, before TV, before plastics.  The stock market had crashed in 1929, followed by a decade named the Great Depression. In parallel, there was a decade of drought and crop-failure in the entire Midwest of North America, aptly named the Dirty 30s.  This was before the 2^nd World War!  

It was a challenging time to live.

  

This was also before Flanges and Pouches

and any other Ostomy gear was invented. 

Ostomy patients were sent home after surgery, 

with no collection device.

       No collection device !?!!

 How did Mabel live with an ostomy, without ostomy equipment?

Mabel lived on the prairies in Western Canada, where summer temperatures rose to +40 degrees C (+104 F) and winter temperatures dropped to -40 degrees C (-40 F).  The only heat in the house was the stove, which burned coal when they had money, wood when they could scrounge, and buffalo-chips (dried cow manure) when there was nothing else.

There was no cold running water.  Water was pumped from a well – winter and summer.

There was no hot running water.  They heated water in a large pot on the stove.

Outhouse

There was no shower.

There was no bathtub.

There was no bathroom in the house.  There was just an outhouse – a seat perched over a pit, in a small building 50 yards from the house.  This outhouse experience, in winter when it was -40 degrees, was the origination of the expression “so cold it would freeze your ass off!”

With no collection device supplied, available, or even invented yet, Mabel made do with rags and towels [try to imagine her angst].  

Mabel’s husband Walter was a practical and inventive man, and soon devised a tin-can with a belt-strap, to contain the stool.  This was leaky and stinky, but a big improvement over the very messy rags.  

Personal ostomy cleanup was in the outhouse, 

probably with a pail of cold water.  Summer and winter.

The tin-can had to be strapped tightly around her waist to reduce the leakage. (not prevent leakage … just reduce leakage).  The edge of the tin-can bit harshly into Mabel’s skin, and left a nasty red compression ring on her skin.  Walter was a horseman who made his own horse-harnesses, so he built a leather collar to cover the tin-can edging.  This was certainly more comfortable and leaked less.  But it was difficult to clean the leather collar, and the device was still stinky.  

Mabel considered a glass container which would be easier to clean than the tin-can.  But adding a leather collar and attaching a belt would be difficult.  And the risk of glass breakage and serious cuts to her stoma would be a big concern.  The tin-can with leather-collar, strapped around her waist, was Mabel's best-and-only ostomy equipment.

The 4 inch circle around her stoma was constantly covered with stool, and I expect she had many rashes, breakdowns, infections, and damages to her skin.  The salves used for harness-burns on horses would have been Mabel’s only relief from these skin problems. 

There was no real ostomy equipment for Mabel.

There was no ‘support group’ for Mabel. 

Mabel never talked about her ostomy.  My father, who lived at home for the first 6 years of Mabel’s ostomy, was never told about her ostomy, never saw anything that would indicate an ostomy, never saw a bulge on her dress.  While her husband designed and built her ostomy-gear, that would be the last time he participated and the last time they would talk about it. It just wasn’t ever discussed. 

For 15 years, Mabel lived silently

with the inconveniences of an ostomy without ostomy-gear

with no-one to talk to.

Mabel was the sole steward of a 1-acre vegetable garden.  She dug the entire garden with a shovel, planted seeds, and hoed weeds.  In the fall, she dug out the potatoes and carrots, harvested and preserved corn and peas and beans for each cold winter ahead.  For 15 years, from age 52 to age 67, she worked that garden, and she lived with an ostomy.  And she lived without ostomy equipment as we know it today.

How did Mabel keep herself physically clean, mentally content, and spiritually thankful, 

with such crude ostomy equipment, and under such harsh conditions?

My grandma Mabel was one tough lady. 

Mabel was British, Victorian, stoic, and content ... and she never complained.

And she was so thankful that her ostomy gifted her 15 years of good living.

There have been days I have complained about my colostomy.

With the imagination to re-live Mabel’s ostomy experience,

I will not complain again.  Ever.

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Mabel’s Timeline

1886       -                    Born in England          126 years ago

1904    Age 18             Married Walter            108 years ago

1912    Age 26             Emigrated to Canada  100 years ago

1938    Age 52             Ostomy Surgery           74 years ago

1953    Age 67             Died                               59 years ago

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Updated 28June2012   >>>  Mabel's Medical History

I did considerable sleuthing to locate Mabel's medical records.  Not surprisingly, these 74-year-old records have been destroyed.  BUT, there was an index card, with handwritten notes, saying

Mabel was diagnosed with Acute Ulcerative Colitis

and hospitalized from December 18 through to February 13. 

There was no written record of her type of ostomy.  I have so many more questions, but the answers may now be lost in history. 

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Penalties for Not Listening

Hockey player Paul Riome didn’t listen to his body or his doctor.  

Minor Penalty was undetected cancer.  Major Penalty was a permanent colostomy.  

Riome tells of his experiences, attitude adjustments, and comeback to hockey. 

The story is about overcoming colorectal cancer 

and showing other hockey “tough-guys” the importance of prevention.

Even with daily rectal bleeding for over 2 years, I refused tests and examinations.

“You got Cancer ...  Life-expectancy is uncertain”.  Reminiscent of nasty and unexpected hockey hits, I asked myself  “what the hell was that for?”  Of course there was no answer, but I adjusted quickly and vowed that after surgery, I would do everything that I could do before surgery, and I would play hockey again. 

Surgery day arrived.  A nurse fussed to be sure the hospital gown covered my backside.  I joked at the silly gesture, as a dozen people would see everything I had, from the outside and the inside. 

After 6 hours of surgery, “I am back and I am alive!”

During recovery at the hospital, I set my sights on completing what I named a sprint, a half-marathon, and a full-marathon (actually … a shuffle to the doorway, to the nursing station, then a full loop around the ward). 

The rehab routine was similar to hockey injuries, but the outcome would be drastically different, as the surgery damages could never be restored.  With trepidation, I started Public Skating, surrounded by grandparents teaching pre-school kids to skate.

Exactly four months after surgery, I was back playing hockey.  I was amazed at how many players made a point of acknowledgement, usually with the back-handed male style

‘… Nice you’re back, looking dangerous as ever’

‘… I always hated going into the corner with you, but now I’m really afraid of the sh*t flying’

‘… I thought with your butt sewn shut, that your stride would be shorter’  

After an aggressive altercation around the net, a large and hostile defenseman pummeled me with a verbal tirade of hockey-trash-talk.  I said ‘you can’t really call me that, because I don’t even have one’.  Instantly he went silent, smiled, put his arm around my shoulder, and said in amazement “you’re the one”. 

Hockey team-mates were curious, so I volunteered to answer any questions they had, and show them anything they wanted to see.  They all related to the red-neck attitude that prevents us from having rectal examinations and colonoscopies, even while knowing that these procedures are effective lifesavers.  

Earlier tests, with earlier detection, probably would have ‘saved my ass’ 

and I may have avoided the surgery and permanent colostomy  

Several wives (mostly with tears) told me it was my experience 

that convinced their husband to get a colonoscopy. 

I am humbly pleased that others have benefitted from my experiences

An ostomy is not as good as the original equipment 

but I get to live

Two years ago my doctor told me I could have a perfectly normal life with a colostomy. 

     I didn’t believe him then.  

     I do believe him now.

CLICK HERE to Read the full story published by The Phoenix magazine

Greg Doesn’t Golf anymore

Greg was the spark that started this Living Bigger With Colostomy blog. 

Greg golfed 6 days a week for 30 summers, then was diagnosed with T3 colon cancer, which resulted in surgery for a colostomy, as well as chemo and radiation.  

Greg quit golfing, fearing the embarrassment of changing a pouch while his golf-buddies waited, or the horrors of a pouch explosion.

Greg also quit driving and riding in a car, for fear of the seatbelt rubbing on his stoma.

Greg declined to lift grocery bags, for fear of a hernia.

Greg stayed in his house, intentionally remaining inactive, and gained enough weight that his pants didn’t fit.  So he started wearing his pouch outside his pants.  With this new humiliation, he refused to leave his house … so both Greg and his wife became reclusive.  This soon dragged both of them into a depression which brought apathy, and lowered confidence and motivation.  Soon Greg’s wife was changing his appliances for him, and they spiraled down together.

Greg and I talked a lot.  Cautiously, I shared many of my positive and active experiences living a normal life with a colostomy – wanting to show that he and his wife could live bigger, yet not wanting to intimidate with my adventures that would be unbelievable and unrealistic for him.  We had a few successes:

• Seatbelts – I drive, and carried a backpack with a hipbelt for 40 days.  Its OK for Greg to drive and ride.
• Pouch on the Outside – Buy pants 2 inches bigger, wear suspenders, and get the pouch back inside your pants!
• Pouch Explosions Golfing – I have golfed for 2 years and played over 100 hockey games (taking hits and blocking shots) and have never had an explosion. Greg is safe to golf ... and no reason to be embarrassed changing pouches on the golf-course, being much more environmentally sensitive than his buddies that relieve beer-overloads in the bushes.

 These small incremental successes are positive and encouraging.

Golfing with Greg is now on my bucket list !

Nepal2011: We are SO Fortunate

May 2011

We are unimaginably wealthy, compared to Nepalese standards …

Nepal is the poorest country in South Asia, and the 12th poorest country in the world

Average ANNUAL income is $450

57% of Nepalese live for under $60 per month -  30% live for under $12 per month

50% of Nepalese children under 5 years of age, are malnourished

Life expectancy for men is 63 years, and for women is 64 years.  Less in the countryside

Child mortality is the highest in Asia.  Maternal mortality is the highest in the world

Education, HealthCare and Drinking Water are NOT available to all

To travel in Nepal is to step into the bottom of the Third World. 

We have so much – they have so little.  

Yet it seems most countryside Nepalese are happier than we are.

Public Transportation means you walk

There are few roads.  Everything is hauled on someone’s back

Housing standards are not the same as ours

Stone buildings means every ‘brick’ is hand carved

In the countryside, there are no flush toilets

These woman in these kitchens will prepare meals for 20 guests

Nepalese People work hard

Yet Nepalese people seem genuinely happy

Sometimes we may think life is treating us badly so we feel justified to complain

But our hardships are insignificant in comparison with the life struggles of most Nepalese people. 

I found no Ostomy Supplies in Nepal. 

Our Nepalese guide was shocked by my Colostomy,

having never even heard about ostomies.  

It occurred to me that there are few (if any) ostomates in Nepal. 

People in Nepal don’t have ostomies – they just die

Considering this alternative ...

We are all so very fortunate to be alive

We should not complain. Ever.

Nepal2011: Colostomy Got Me Here

May 2011

Trekking to Everest Base Camp was an absolutely awesome trek! 

I can honestly say there was not a single minute when I thought I would rather be somewhere else.  Really!

I couldn’t dream for more … 

Spectacular Nepalese landscape

Happy & friendly Nepalese people

A varied but like-minded team from Canada

Physically & mentally challenging trek



Trekking to Everest Base Camp

was on my ‘bucket list’ for decades.

Cancer & Colostomy motivated me to

Just do it !

Nepal2011: Everest Base Camp

It is a cold, desolate, hilly climb along the Khumbu Glacier from Gorek Shep (5164m / 16942ft) to Everest Base Camp (5364m / 17598ft). The air has 50% less oxygen than at sea level.  Our lungs struggle to fuel our bodies, and our muscles retaliate as we push them relentlessly on half-rations of oxygen.  The rocky moraine and the aging glacier ensure there is no sustainable vegetation or animal life here.   



The massive faces of Everest, Nuptse, and Lhotse tower above us.  It seems natural to feel very small in this place.  The big mountains seem intimidating, and certainly not inviting.  

It is customary and respectful to hang Prayer Flags

We all felt honoured and privileged to be here. Everest Base Camp is a special place.  For some, it is a lifetime bucket-list highlight.  For others it is the destination at the end of a long trekk. 

But for the 5 cancer survivors there was a special connecting bond.

We spontaneously joined in a circular huddle with eyes closed and heads bowed.  To us, it seemed the wind and snow stopped, and the 5 of us were alone. We each experienced our personal flashback - from the cancer, through treatment, through recovery, to standing together at Everest Basecamp.  As if controlled by a single mind, we simultaneously raised our heads and met the eyes of our fellow survivors. 

One survivor said 

'We are alive, and We are here on Everest’

Emotions were shown by some, felt by all

Thankful, Joyful, Peaceful, Proud, Hopeful

The huddle split into a line, Ashok joined us, and someone took this picture. 

Living is hard.  Life is a struggle.  Enjoy it.   

This same event is told with more insightful, eloquent, and artistic flair by our Trip Leader Tami.

Prevention

Many men will find reasons to decline a colonoscopy, 
even knowing it is a simple procedure and a proven lifesaver. 

A Colonoscopy could save your ass – maybe your life!

I sat in our hockey dressing room with 15 men, all over the age of 50.  There were subtle questions about ‘what caused it?’ with each hockey player quietly and cautiously wanting to avoid or prevent the same from happening to him.  

To a man, they all related to the red-neck attitude that prevents us from having rectal examinations and colonoscopies, even while knowing that these procedures are effective lifesavers. 

Even with daily rectal bleeding, I had refused any tests and examinations for 2 years.  

Earlier tests, with earlier detection, 

probably would have ‘saved my ass’ 

and I may have avoided the surgery 

and permanent colostomy

  

I watched the somber faces as I talked.  Over the next two years, I had more than 25 hockey players discretely tell me they had ‘that procedure’ done.  Several wives (mostly with tears) told me they had unsuccessfully ‘encouraged’ their husbands for years, but it was my experience that had convinced their husband to have the colonoscopy procedure done.  I am humbly pleased that others have benefited from my experience.

Read the full story of my 

Comeback to Hockey

Comeback to Hockey

December2009 [4 months after surgery]

I had Traded Cancer for a Colostomy 

then  Recovered with Rehab 

                              from Colostomy&Resection Surgery

Exactly 4 months after surgery, I was back playing hockey.

This was the first big test of my conviction that 

After surgery

I will do everything I could do before surgery

The first milestone was to earn confidence that I could block shots and take the hits … without an explosion!  

Hockey Talk

Hockey team-mates were curious about what had happened to me, so I volunteered to answer any questions they had, and show them anything they wanted to see … and that had a way of dispensing with what could have been an uncomfortable situation.  Players aged 50-65 parade around the dressing room and shower together after games – and we jokingly concluded that even with an ostomy, my body would not be the worst among the variety of sizes and shapes!     

News of my cancer and surgery somehow travelled around the league of about 250 hockey players.  As I played ‘first game back’ with each team, I was amazed at how many players made a point of acknowledgement, usually with the back-handed male style ... 

'Didn't slow you down a bit'

'Nice you're back, looking dangerous as ever'

‘I always hated going into the corner with you, 

but now I’m really afraid of the shit flying’

‘I thought with your butt sewn shut, 

that your stride would be shorter’ 

It was all sincere and heartfelt, but the presentation

was the just the best that men that age can do.  

You're the one

After an aggressive altercation around the net, a large and hostile defenseman pummeled me with a verbal tirade of hockey-trash-talk including “…#@*& ass-hole …”.    I sniped back ‘you can’t really call me that, because I don’t even have one’.  Instantly he went silent, smiled, put his arm around my shoulder, and said in amazement “you’re the one”, knowing only that someone in the league had been hurt by cancer and surgery, but had recovered.

Read the full story of  my 
Comeback to Hockey

  

Yes we  can.  
Ostomates can play Hockey.