Opening Doors

Adjusting to the new changes after ostomy surgery

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Trekking in Patagonia (2015)
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Author’s Note: An ileostomy is a surgically created opening in the abdominal wall for the ‘stoma’ which is constructed by bringing the end of the small intestine out onto the surface of the skin, and with an external abdominal pouch fitted to collect intestinal (fecal) output).

Originally published in The Phoenix ostomy magazine – www.phoenixuoaa.org 

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By Jim Mielke

Soon after receiving my first ileostomy (at age 19), I tore out a peri-stomal hernia while working in a physically demanding parks maintenance job. After years of poor health struggling with Inflammatory Bowel Disease, I loved the feeling of renewed strength and a toned, tanned physique from the heavy outdoor work as my muscles swelled from tossing 55-gallon steel drums filled with trash into the garbage truck. Until then, I hadn’t considered safer alternatives to building and maintaining my physical fitness. But after getting the hernia repaired, my surgeon lowered the boom: No more heavy lifting – EVER!  I was devastated.

Tough Limitations

Coming to grips with post-operative limitations on activities we are passionate about can be tough – especially when it’s clear there is no going back to the way things were before surgery. You may have been a runner all your life, or a top tennis player – it was your very identity! How can you just let it go?

Fortunately, many people not only bounce back from these challenges, but experience personal growth. Psychologists call this “post-traumatic growth” – referring to the positive psychological changes that result from adversity or other challenges that can lead to a new and more meaningful life. Trying to hang on to the way things were before will only aggravate the situation and make it worse. But with acceptance and a touch of optimism, you can become more resilient and open to new ways of living.

Parks maintenance, Colorado, USA (1978)

The hernia and weakened abdominal muscles eventually forced me to give up tennis and ice hockey, which were my top competitive sports during high school and college, and I was also an accomplished trumpet player, headed for a possible career in performing arts. But that all ended abruptly as my weakened and herniated abs made it hard to blow my nose, let alone a brass horn. Soon after graduation I moved to the tropics, and with no ice in sight I hung up my ice skates anyway, and took up scuba diving! I had also given up wilderness backpacking trips – until recently, when I completed a four-day, 50-mile trek through the mountains of Patagonia in southern Chile with a small day-pack and a roller suitcase for my heavier items, and divided the overall trek into four separate day hikes. 

A particularly interesting and humorous transition occurred when I was suffering with rectal abscesses during the final months leading up to receiving my first ileostomy. It was my sophomore year in college. I was living in a student dormitory and taking only predigested liquids – no solid foods. The university health services surgeon had made 10 incisions in my rectum and buttocks to drain the abscesses, and I had to soak in hot ‘sitz baths’ three times a day while these wounds were healing.

My sitz bath consisted of a portable plastic tub that I filled each time with warm water and Epsom salts and placed over a toilet bowl in the men’s washroom. It was pretty dark in the toilet stalls, so instead of trying to read during these lengthy sitz baths, I used the time to teach myself the banjo – much to the amusement and curiosity of men’s room patrons and passers-by, as Foggy Mountain Breakdown emanated from my toilet stall – with great acoustics as well! As it turned out, we had another trumpet player in our dorm’s band, so when I could no longer play trumpet, I became the group’s banjo player!

Entertaining guests from church at our home in Buffalo, New York (1976)

Sixteen Major Surgeries

Another set-back came several years ago while packing for a trip to visit friends and family in the USA. I noticed a slight bulge in my abdominal incision and headed instead to Bangkok for surgery. It was my 16th major ostomy related surgery since receiving my first ileostomy at the Cleveland Clinic in 1977. Emerging from the unexpected surgery, I was almost relieved to have to cancel my visit to the USA, as if some underlying intuitive awareness was trying to alert me to avoid this potentially disastrous trip. Apparently, I was literally coming apart at the seams. The longitudinal incision that runs along my abdomen from stem to sternum (and had been opened on multiple previous surgeries) was ripping apart and the muscles were separating, which meant that I was a walking time bomb. It would not have been pleasant if my guts had spilled out while on the plane or somewhere away from home.

With practiced precision, the nurse located one of my elusive veins to start the IV, the anesthesiologist wished me a pleasant snooze, and after 90 minutes on the table my surgeon had successfully inserted a large mesh across my entire abdomen. It was like getting a new set of surgically implanted ‘six-pack’ abs! And my cost-conscious Thai surgeon gave me (for free) the remaining portion of the high-tech mesh that another patient had purchased but didn’t use. Once again, I could not believe my good fortune, having avoided another possible disaster, but also to be given what now seems like a gift – such a wonderful gift of enhanced quality of health and blessed freedom to continue enjoying my life!

There was a down side however, as my surgeon imposed further restrictions on my most cherished activities. It was a tough blow, and extremely hard to take. I broke down in tears in the hospital lobby. 

Peak Health

Since receiving my ileostomy 30 years earlier, I had been enjoying peak health, and placed a high value on maintaining my fitness. I was also hooked on the endorphin highs from physical exercise. But once again, I was forced to modify my activities – in particular, some of my favorite yoga postures (e.g. headstands and pelvic stretches) were now relegated to the past. But fortunately, yoga offers plenty of postures to choose from, many of which can be modified for any physical condition or level of fitness. And now, as a yoga teacher, instead of feeling regret for this loss to my own practice, I take pleasure observing someone in a perfect headstand, and enjoy sharing in that person’s sense of achievement.  I also continue to draw on my skills and experience to help others learn the art and science of yoga.

By accepting each new situation, I have been able to adjust to new, and even more fulfilling activities – and in the process discovered something that has radically changed my life: I abandoned the high pressure of competitive sports – which was tearing me up inside, and instead took up non-competitive swimming, cycling, hiking and yoga – all of which promote the fitness, toned physique, and overall sense of well-being that I crave, and with no need to compete against anyone – not even myself. Yoga and swimming also gently and safely tone the abdominal area, while the non-competitive nature of yoga acts as a powerful liberating counterbalance to the pressures of our highly competitive society.

It’s Not Over

A post-surgery restriction or just symptoms of normal aging, it’s not easy to give up a life-long passion, especially when it has become a symbol of self-identity – one’s pride and joy. Indeed, many of us are so attached to the past, to the familiar, we tend to miss the opportunities that are right in front of us.

Teaching classical yoga and meditation at Silver Bay YMCA of the Adirondacks, Lake George, New York (2011)

So, when the time comes to hang up your beloved tennis racquet (and finally ditch the knee brace!) consider tapering off to golf. Or how about replacing your running shoes with a pair of swim trunks? Just stop for a moment and take a breath. Recognize and accept what your body is trying to tell you. Re-evaluate your priorities and allow yourself to become open to the unexpected. Discover the new possibilities that were not there before – and before long, the next amazing thing will be waiting for you behind the next door! As the popular song goes: “You’re a fool if you think it’s over, it’s just begun.” 

For over four decades, Jim Mielke, who has a doctorate in Public Health, has had the privilege of living and working in some of the poorest, most remote and under-served countries throughout the Asia-Pacific region, where he has assisted governments, international aid agencies and communities to strengthen local and national health systems. Since receiving his ileostomy when he was 19, life after recovery felt as thrilling as being shot from a cannon.  Following years of depression, pain and suffering with IBD, Jim is still flying high with renewed health and freedom.

You can read more about Jim’s overseas experiences here or connect with Jim on his Facebook page. Jim has been living a full and active life with an ileostomy for over 45 years. Jim lives in a quiet seaside island setting in southern Thailand.

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