My First Oley Conference

Thoughts by Jane Lindsay

My first impression of an Oley Conference was of an atmosphere of friendship that filled the room. Newcomers were warmly welcomed and deftly guided through the conference day.

Valuable, relevant information and insights were conveyed in many ways:

  • Presentations by qualified, dedicated medical teams.
  • Contributions in group discussions by those who have digestive disorders, as well as their caregivers and family members.
  • Suggestions from exhibitors who truly care about conference attendees, as well as about the quality of their products and services.
  • Conversations with all who come by and mingle during the wonderful meals, picnic, silent auction, reception and bus rides.

Such a spirit of fun meshes with education and new understandings. I left with a whole new definition of hero's and look forward to renewing friendships in Salt Lake City. I sincerely hope you’ll join us too.         

Kinship, Courage Found at Oley Conference

By Gail Brenenstuhl

Two and one-half years ago, the unthinkable happened to me. Twelve hours after being admitted to Glens Falls Hospital in an emergency status, I was rushed into surgery where they removed almost all of my small intestine. Two prior colectomies had already left me with no colon. I now had only 160 centimeters of intestine left. Barely out of the effects of the anesthetic, I was being told I would need home IV therapy  called TPN. I was bewildered and didn’t really know what they were talking about. The next day I was sent by ambulance to Albany Medical Center and put under the care of Dr. Lee (my former surgeon) and Dr. Howard (a pioneer in HTPN).

I went into a severe sepsis and spent the next two months in the hospital on TPN and numerous IV antibiotic drugs. Fighting the nausea, pain, and confusion was an everyday occurrence with me. Finally, Dr. Lee was forced to operate on me again to clean up the infection. It resulted in a jejunostomy and short bowel syndrome. I had to face coping with HPEN therapy and caring for a stoma for the rest of my life. I was devastated and did not want to believe what had happened to me. I had the support of friends and family, but with the exception of my husband, Chuck, who was my caregiver, no one really understood my situation.

Dr. Howard told me about the Oley Foundation, but I didn’t want to listen. I was much too ill to care about what other people had gone through. After I got somewhat better, my husband talked me into going to a local Oley event: Don Young, a former Oley president, was celebrating 30 years on HPN. There I began to meet people like me. Their openness and friendliness encouraged us to attend the Oley Annual Conference in Saratoga Springs this past summer.

At the conference I met so many people willing to talk about their situation and share their experiences, I began to see I was not alone. People who aren’t going through this don’t really have a clue, but here were people up close and personal who knew, as homePEN consumers and caregivers do, what we are going through.

My husband and I found the breakout sessions very informative. We were even fortunate enough to join a session with Dr. Howard and Dr. Jeppesen from Denmark, who is in charge of the drug study I am participating in. That experience was the highlight of the conference for us.

We, as newcomers, were paired up with an experienced conference goers to help us; and the conference was so well run, we never felt “lost in the shuffle.” We thoroughly enjoyed ourselves and are even getting the courage to fly to Utah to join in next year’s conference in Salt Lake City. We figure, what better way to test our travel wings with than with a support group of such experienced people? After all, my own doctor will be with me. And even if she wasn’t, there are many of the most experienced HPEN clinicians and homecare companies attending the meeting, staying in the same hotel. What better support can there be than that?

Chuck and I would urge all newcomers to HPEN therapy to get involved with Oley and attend the conferences and other events. We can’t begin to explain what a help it is to have the support of all these people. You have to find out for yourselves what it means to know you are not alone. Perhaps even I could help as an “experienced” conference attendee, that is after I have mastered the seemingly daunting task of travel with all the homePEN requirements. There too, Oley has many “tricks of the trade” to pass on to us and we are certainly going to enlist their expertise.

For tips on traveling with HPEN, go to Travel tips or contact the Oley office (800-776-OLEY or Harrinc@mail.amc.edu) and ask for the collection of travel articles and the travel/hospitalization packet you should carry with you whenever you leave home.