Celebrating 40 Years With an Ileostomy

Patient Expert
Jim Mielke

I can still recall feeling like a new man almost immediately upon waking up with my ileostomy ― suddenly free from years of pain and misery with Crohn’s Disease and addictive medications from age 14. When I finally got my bag, at age 19, I thought, Why did they wait so long?

I have always had a positive attitude, and with deep appreciation for my many blessings. Over the years, since 1977, I have undergone 16 ostomy-related surgeries, like a well-used car in need of servicing ― at times getting all the repairs done while I happened to be in the shop. As some parts needed to be removed or replaced, and others have been repaired, I have eventually been rolled out onto the street again, shiny and good as new.

My most recent "tune-up" took place in Thailand, where I am semi-retired. Emergency lifesaving surgery in May 2006 for an abdominal hernia, resection of gangreneous ileum, two strangulated groin hernias, mesh implants, and a reconstructed ileostomy on the other side of my belly was a stark reminder to:

  • Guard my health, knowing that long stretches of good health can be taken for granted
  • Be thankful for all I have been given, including another chance for a normal, healthy life
  • Live life well and to the fullest.
  • Set positive examples for others: healthy lifestyle, life-affirmative approaches to personal hardships
  • Realize personal growth, wisdom: the hidden gift from dealing with pain, suffering and misery
  • Prioritize and set aside enough time each day for meditation, swimming and yoga
  • Appreciate friends and family. Sharing my up-beat, positive attitude can be an inspiration for all

How my life has been affected by my ileostomy

Through the toughest times I would remind myself that it is all making me stronger in the end. Amazingly, despite it all, I continue to live a robust, healthy, full and active life.

My biggest fear ― lifestyle limitations as a result of surgery or illness ― has also not been a major problem. I know from experience how debilitating, depressing and frustrating active IBD can be. This experience has been an important reminder to be more consciously aware and grateful for each and every day without pain ― every blessed moment of health and well being which can so easily be taken for granted when we are well.

Who or what helped me most

  • A sense of the eternal; interdependent and connected to all of existence as an integral part of a universal power at the core of life, realized through the practice of yoga and meditation.
  • My family called me from the U.S. every day, and this has brought us all closer together
  • My friends, including a loving girlfriend’s reassurance of physical acceptance and tenderness
  • My highly competent Thai medical staff at a leading private hospital in Asia, and my personal Thai physician (and long-time friend) who consulted regularly with my surgeon.
  • Yoga and swimming complement each other, gently working to strengthen the body again
  • Journaling, as a welcome release and a useful and interesting record of the experience

My takeaway advice for someone struggling with IBD

  • Take it easy ― because it ain’t easy!

  • Lighten up, laugh a bit, enjoy. Don’t be too serious, and a good sense of humor goes a long way

  • After years of suffering with Crohn’s Disease and addictive medications that only treated the symptoms, receiving an ileostomy was the best thing that happened to me. It gave me back my health, my freedom, and 40 years on, life keeps getting better all the time

  • Soon after receiving my first ileostomy, my Entero-stomal Therapist gave me a useful pamphlet entitled, “Sex and the Male Ostomate,” and I haven’t stopped to look back since! As with everything else, good health facilitates great sex, too!

  • Be accepting, flexible and learn to roll with the flow. Bumped off the track? The next adventure is about to begin! Find the silver lining that transforms negatives into positives, and new doors open.

  • Examine your lifestyle choices, habits and ambitions influenced by prevailing family or societal conditioning. Much is given to us with good intentions by our parents and teachers. But listen also to the body. Be sensitive to its unique needs and temperament. Feel free ― have the courage to make your own path to fit your priorities in life.

  • Swimming is great for overall physical and cardiovascular fitness, with no adverse strain on the body. After developing peri-stomal hernias from heavy lifting at work, I also gave up competitive sports, tennis and ice hockey (the pressure was tearing me up inside), and trumpet playing (no longer possible after abdominal surgery), and discovered even better alternatives: swimming, scuba diving, hiking, biking, yoga, guitar, banjo and piano.

  • It is surprising that after 40 years enjoying the benefits of swimming with an ileostomy in public places throughout the world, I have only rarely met other ostomate swimmers. Kids at the beach or in the pool are wonderfully innocent, and often remind me with genuine and unguarded curiosity that I have a bag hanging on my belly. But if it gets to be too much and to save time, I just wow them by telling them I survived a shark attack.

  • Learn to meditate, and let your being dissolve into it on a regular basis. Yoga is also highly beneficial, toning and relaxing the body, and is adaptable to any age or condition

My plans for the future

Fired up even more now to get fully into life ― can’t waste a minute ― I’m reminded again to live each day as if it were my last. Keenly aware of how precious good health is, how much we take for granted, and how quickly it all can change.

Swimming with sea snakes, Niue Island, South Pacific

Credit: Jim Mielke Swimming with sea snakes, Niue Island, Pacific.

One way I try to give back something for all I have been given is to be a positive example simply by the way I live my life.

I’m always looking to reach people with the message that you don’t have to be rich or a super-hero to do all this cool stuff. I’m doing it and I’m a pretty normal guy, and I also happen to have a bag. In fact, I feel as though I’ve been retired my whole life ― on one gigantic, fun-filled adventure. It certainly hasn’t seemed like work!

If you really want to do something, you can. The whole world is available to explore, to learn from and experience mind-opening and even life-changing perspectives. Perhaps this urge to get out there and do it all is just another side benefit of knowing what it is like to lose my health, and to be given it back again.