Showing posts with label Ostomy. Show all posts
Showing posts with label Ostomy. Show all posts

Wednesday, June 20, 2012

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 2nd 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.

--------------------------------------------------------------------------- 
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

----------------------------------------------------------------------------------------------------------------------------------------------------
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. 
-----------------------------------------------------------------------------------------------------------------------------------------------------

Friday, June 1, 2012

HockeyGear: StomaGuard


I had traded Rectal Cancer for a Resection and Permanent Colostomy, and 4 months later I was back playing hockey.  I was naturally concerned about herniating, and about stoma-damage by rubbing or impacts.

Hockey is a rough game.  The best hockey players are big, strong, fast, aggressive, and mean.  I only have the ‘fast’, and some players are double my weight.  I have always worn the best protective equipment to avoid injuries.  And that was before I had a colostomy and stoma. 

I first tried playing with just an unprotected pouch. As my stoma was on-line with my hockey pants belt, the rubbing was an obvious problem. I was feeling unsupported and insecure about herniating, and certainly nervous about impacts.  So I quit this experiment after 1 game.
I then tried playing with the Convatec Stoma Cap Cover and a Nu-Hope Ostomy Girdle.   I used this setup for most of 2 years, and it gave me moderate impact protection, and good hernia support.  But the girdle cost some flexibility of movement, and there was slippage of both the Stoma Cap Cover and the girdle, which stressed my flange adhesive.
I wanted superior impact protection, similar hernia support, with better flexibility.  I talked with Bob Zurowski from Stomaplex and got the answer.  

Freedom-Guard's outer shield is strong enough to take hockey impacts, but can be bent to fit the abdominal contour. The belt is comfortable on my skin, and gives good hernia protection without restricting flexibility or mobility.  The U-shaped padding holds the appliance in place, while protecting the stoma.  I wanted extreme protection for hockey, so Bob built the neoprene padding out to 5/8 inch.  I was pleasantly surprised that the Freedom-Guard stays in place, with no shifting or sliding, even with the hockey-belt right on the Freedom-Guard, and the hockey pants moving as I stretch, bend, and rotate.


With the Freedom-Guard, I feel confident the appliance will stay secure. 
I feel supported for hernia protection, and I know I am safe from impacts.


Now the real game-day testimonials. It has been mentioned that I play bigger than my size (‘he’s only 150 pounds, but plays like he’s 190). I think that is intended to be complimentary, but that style is hard on my body.  In 55 years of hockey I made a quick count of 3 concussions requiring hospitalization, 12 broken bones, 3 shoulder separations, and 1 torn knee.  A colostomy hasn’t changed that style. I have taken hits, crashed into the boards, fallen on the ice, blocked shots, and been speared with sticks.  
Sometimes I hurt.  But my stoma has never been hurt. 
It is a real testament to StomaPlex that I can continue to play that style with warranted confidence.

Read Prior posts on
I receive NO financial benefit for sharing this experience and product review

Thursday, May 24, 2012

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.


Saturday, May 19, 2012

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 !

Saturday, March 31, 2012

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.

Friday, March 30, 2012

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 !

Sunday, March 25, 2012

Nepal2011: Summit Kala Patthar

May 2011
For trekkers wanting the big-view of Everest … overnight at Gorak Shep, wake-up at 3:45am, ascend Kala Patthar in the dark, and watch the sunrise on Everest.  But, It’s not that easy. 

Acute Mountain Sickness (AMS) is caused by a combination of reduced air pressure and lower oxygen levels at high altitudes [beyond 2400m / 8000ft].  Gorak Shep is 5164m / 16942m.  Kala Patthar is 5545m / 18192ft.  By the time we reached Gorak Shep, AMS had taken its toll on our group.  Some people stayed in their warm sleeping bags, rather than face the dark, cold, windy, harshness of the climb – for days they have been hurting from AMS-induced dizziness, fatigue, lethargy, and screamer-headaches.  Some of us were fortunate to not have these symptoms, nor the rib-rattling cough, nor the loss-of-appetite that robs strength and resolve. 


The climb is long, slow, and relentless.  The air has 50% of the oxygen that we expect at sea-level.  Lungs work harder to compensate.  Heartrate rises to force more blood to the big muscles. Muscles resist and retaliate when being pushed on half-rations of oxygen.  We each
struggle to find the strength and drive
to continue moving upward.  
Few words are spoken.  People stop for their own reasons - maybe only a rest, or to clear their foggy brain, or to question the pain vs the reward of this summit, or to deal with the nausea & pending vomiting, or from their body’s refusal to continue.  It’s not predictable who will be stopped by AMS.

Kala Patthur with Pumori in the background
I could see the prayer flags ripping on the wind swept summit.  How hard could it be to climb those last 100 meters?  I was amazed at how slowly I progressed.  Focusing mindlessly on my feet, it occurred to me that 
Each step was less
than the length of my boots! 

I was pushing myself, mentally and physically, and 
All I had left was 6 inch strides!  


My thoughts were simple.
Keep moving ... just one step at a time. 

  


2 Cancer Survivors and our guide Ganesh at Kala Patthur summit
Six of our team, ages 57 to 62 summitted Kala Patthar.  Summiting was worth the pain.The clouds cleared and the sun rose, showing  Everest with its perennial plume of snow blowing over its summit.

We spent 45 minutes on top of Kala Patthar, celebrating our accomplishment, hanging prayer flags, and taking pictures, yet regretting the absence of fellow-trekkers with whom we had shared the last 20 days.  The walk down had less physical exertion, but we remained focused, well aware of the perils of fatigue while descending.


Everest as seen from summit of Kala Patthur
Why did elders summit, when younger people didn’t?  
Maybe the elders were attuned to their aging bodies and avoided AMS by methodically moving ‘mountain-slow’.  Maybe the elders knew this was a once-in-a-lifetime shot, and they wouldn’t quit until they had nothing left.


Living Bigger with Colostomy on Kala Patthar summit 



Rob Hill climbed the SevenSummits
I climbed Kala Patthar
We all have our own mountains to climb.


Yes we can.  Ostomates can climb mountains.





For another perspective of this event, read what trip leader Tami wrote:

Thursday, March 15, 2012

Ostomy Gear for BackPacking

Hiking and Trekking can take us to some spectacular places, explore our planet, connect with the natural world, and engage interesting people and cultures.  But BackPacking is hard work. 
BackPacking can be tough on ostomates. 
BackPacking means we carry the gear we need for the duration of the trip (maybe a day, a week, or a month). I keep pack-weight to an absolute minimum, knowing enjoyment is inversely proportional to the weight of my pack. BackPacking for DayHikes means small loads of about 15 pounds.  Trekking requires all the gear needed to be self-contained, and packs can be 40 pounds. 

West Coast Trail - Canada

Mount Everest BaseCamp - Nepal



The most efficient way to carry a pack all day long, is by relying on the HipBelt to move the weight from shoulders to hips. 

Great idea, but the HipBelt rides directly on my stoma, and can peel the flange.  







  

     My experience adapting
Stoma Cup
Spandex Shorts


So ... I use a Stoma Cup to protect my stoma,
and prevent rubbing that could peel the flange. 

Then I keep it all together and avoid
‘the pendulum swing’ with spandex shorts.



 StomaGuard
But the compression, and pressure, and rubbing by the HipBelt was still uncomfortable and a flange-peeling-risk.  So I custom-built a StomaGuard to keep a gap between the HipBelt and my stoma.  It’s a piece of aluminum bar, bent to follow the shape of my abdomen, with a bump-out to avoid my stoma.  Pressure from the pack weight and tightening the belt, is spread over my abs, but leaves a gap over my stoma. 

StomaGuard Top-View

Custom-Built StomaGuard


StomaGuard with 'bump-out' to prevent stoma-rubs
I have been BackPacking for over 60 days. 
Never had any damage to my stoma. 
Never had a leak or explosion.
Never had an ostomy-related problem. 
Never missed an opportunity for a BackPacking trip.

Yes we can.  Ostomates can go Hiking, BackPacking, and Trekking