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Newsletters: Clouds and Their Silver Linings
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Clouds and Their Silver Linings

Norman Benway

  Norman Benway

Several years ago I had been diagnosed with an esophageal motility disorder where I could not eat or swallow. A PEG tube was placed and that became my source of nutrition.

At that time, and at 92 pounds, I met Marcia, a dietitian, who taught me how to use the PEG tube to become healthy and strong again. After two years, my weight increased to 117 pounds. But I began having bleeding problems that would not stop. I could no longer tolerate tube feedings. I went from eight plus cans of formula a day to maybe one. My weight dropped.

 

A Hospital Visit

One day at work I had several episodes of bleeding and I called my GI doctor. The doctor tried to encourage me to keep the appointment I had coming up in a month, but I didn’t think I could wait that long. I am a persistent man and he wouldn’t listen to my concerns, so I went to the emergency room.

They admitted me, and after some tests diagnosed me with ulcerative colitis. I was put on bowel rest and parenteral nutrition (PN). I was hospitalized for several weeks in order to give my digestive tract a rest and to formulate a plan.

        Norman relaxing with his grandson.

During the hospital stay, it was suggested I have a swallow study to determine my current swallow function. The doctor ordered it.

I was able to watch the procedure on the screen and—miracle of miracles—I PASSED! An oral diet was ordered for me. I started out slowly, for this was the first time in years I was able to swallow. My esophageal motility disorder had prohibited that luxury for over two years.

The tearful thrill for my wife and me was unbelievable. We had conversations revolving around what she was going to cook for me when I got out. Thanksgiving and Christmas were coming and I had dreams of what I could eat. Yet I still had bleeding issues.

The doctors wanted me to have surgery to correct the problem but I was advised to try Remicade, an IV infusion that I needed to get every two months.

 

Trouble Healing

As my weight came back—and my eating improved—the next step was to remove my PEG tube, my dining buddy for greater than two years. I made an appointment and the doctor removed it, but unfortunately the insertion site did not close up as the doctor had stated it would. The acid from my stomach continued to leak and cause redness, burning, and irritation on the surrounding skin. What had started out as a small insertion site for a PEG tube grew into an uncontrollable seeping, painful problem that lasted for weeks.

I continued to contact the GI physician about these complications, however he had no answers for me, no solution. He responded, “That is not my expertise.” Now what do I do, I thought.

In an effort to get some help I again went to the emergency room. A surgeon was consulted and Anne, the enterostomal nurse specialist, came into my room. Using an ostomy bag, Anne devised a way to collect the drainage and protect my skin. Surgery was then scheduled in two weeks to surgically close the wound.

Prior to surgery, I saw Anne every day to change my dressing. After surgery, visiting nurses came to the house two times a day to change my dressing for four weeks.

 

The Good in the Bad

Sometimes when we are tube fed or PN patients we think everything goes wrong. I thought that myself and I seemed to have the experiences to prove it. However, there are wonders and miracles along the way.

My original hospitalization for bleeding cradled the miracle of a swallow study and allowed me to eat again. The PEG tube removal couched the miracle of allowing me to meet Anne and the enterostomal group, and understand their medical needs and talents.

We must meet our challenges and setbacks with persistence and optimism. We all are who we are because of the way we handle these problems. I continue to remain persistent in my medical care, and I am better for the experiences of the past year [written April 23, 2009].

This is the Norman that I am today. I trust that from my experience I can give you hope and encouragement that miracles can happen for you, too.

LifelineLetter, November/December 2010

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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