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Conference: Connecting with Others at the Annual Conference
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Katie Marschilok

Katie featured in Oley's 2019 HPN

Awareness video

I am relatively new to the state of needing feeding assistance. My last real meal was August 2018. At that time, I started home enteral nutrition (HEN, or tube feeding) and completely stopped eating anything by mouth. In February 2019, during a routine J-tube change, I had a complication that caused an injury to my small intestine and required total bowel rest for a minimum of eight weeks. That began my home parenteral nutrition (HPN, or IV nutrition) experience. Since then I’ve learned that my digestive problem is dysmotility throughout the small intestine, which makes it very likely that HPN will be a long-term necessity for me.

I had a busy life with many plans prior to this new, not by choice, lifestyle. My booked travel plans included a trip West (Mt. Rushmore, Yellowstone National Park, and Montana) and a twelve-day river cruise in Egypt. When I looked online for advice, for help on how to make these trips possible despite my new challenges, I found out about Oley. Support of my health-care providers at Stratton VA Medical Center in Albany, New York, my infusion provider, and Oley Foundation made these amazing experiences possible. The trip West was made while I was on HEN and the trip to Egypt occurred after I had started HPN.

Requiring HEN or HPN should not limit us.

I feel fortunate to have been able to make a great time and travel investment in myself during the last fifteen months. I made the time to read:

  • Current and back issues of the Oley newsletters
  • Presentations, Power Points, and outlines from past Oley regional and annual conferences

The variety, quality, and usefulness of the presentations made me decide to attend the 2019 Oley national conference in Chicago, Illinois. What I got out of that conference was so much more than I had expected. The presentations were of the variety and quality that I had hoped for. And being immersed in a community of people who understand my health challenges without explanation was empowering.

I met a person who has lived a full life on HPN for over thirty-five years. That gave me hope that I can achieve long-term success with this therapy. Meeting families of children of all ages enjoying life on HEN and HPN was inspiring, too.

If you can attend a regional or the annual Oley conference, you should. And I recommend checking the Oley website regularly. I never leave it without learning something and feeling better prepared to handle my new normal.

LifelineLetter, November/December 2019

Finding the Life I Didn't Realize I was Missing

Julie M. Andolina

               This year, I attended Oley’s annual conference in Lincolnshire, Illinois. It was the first time in over a

Julie Andolina

decade that I’d been to an Oley conference, and I can honestly say that I intend not to miss any more! When I was a child living with short bowel syndrome and needing home parenteral and enteral nutrition (HPEN) to survive, my family found Oley to be a fantastic source of support and education. Growing up, I didn’t know many other children in my position, and frankly, I had been so normalized that I didn’t want to know anyone else. But, as I’ve grown up and come to understand that I will most likely be on HPEN for my entire life, I’ve come to embrace Oley and the work that they do.

Learning New Things

               With every passing minute at the Oley conference, I picked up new and useful information. From the exhibitors, I learned of a new g-tube that indicates when its balloon needs to be refilled; I saw the different types of enteral formula that are available to me, some of which may have the potential to provide me with better nutrition; I was able to speak to a Transportation Security Administration (TSA) agent about how to travel with HPEN supplies. Oley put in so much work to be able to provide me with those resources that I never even thought I could use.


               Oley’s unique conference schedule allowed for a wide range of presentations given by clinicians and consumers alike. However, even more valuable to me than the main presentation sessions were the breakout sessions. These sessions allowed for the presentation of useful tricks of the trade and covered a wide range of topics, all while keeping group size small enough to allow for an intimate experience.


               Sitting in groups of five, ten, max fifteen consumers to one or two clinicians or consumers leading the group, I could ask my own questions and receive answers from people experienced in the HPEN field. I learned of common problems consumers have with their tubes and catheters and was able to provide input with the hope of helping someone else. Looking around at the faces in those breakout sessions, I could tell every participant felt the impact of the experience in many different ways, just like I did.


Impact of Meeting Others

               The greatest part about the Oley conference for nearly everyone—consumers, caregivers, clinicians, corporate representatives, and myself—is meeting the other members of the HPEN community. Getting to share stories and relate to other people when you have a rare disease—or any affliction—is so, so important. I met someone who had been on HPEN for decades, but this was her first conference. Watching this person learn and grow over a period of four short days is an experience I will never forget. She went from thinking a life on HPEN wasn’t a life at all, to being excited for the days to come and about the bonds she’d made. This is the impact that Oley has on its members.


               Before the conference, I hadn’t communicated with another HPEN consumer in at least a decade. I didn’t think I had to—I didn’t want to become my disease. But coming to the conference and seeing all of these consumers gathered together made me realize that being a part of Oley doesn’t make me my therapies. Instead, it shows me the amazing things I can do because of it, and as a teenager, that can be an impossible thing to realize. I went from seeing my tubes and scars as something to hide, to flaunting them by the poolside and speaking about them freely in a public setting.


               From a single Oley conference, I have become empowered. I no longer accept my body, I love it. I no longer answer questions, I educate through them. I no longer see my tubes as limitations on my life, I see them as the sole reason I can live it, and Oley has shown me that there is a lot of life out there to live.

LifelineLetter, July/August 2019

Ohio Oley Conference

 Luke Vohsing with his wife, Jennifer,

and their two boys.

In September, long-time Oley member Luke Vohsing opened our Regional Conference in Columbus, Ohio, by sharing his personal story with a captive audience of home parenteral and enteral (HPEN) consumers and professionals. Luke has been on tube feeding since he was a child, as a result of injuries he sustained in a car accident.

A busy schedule followed, with presentations by Dr. Ezra Steiger on his 50 years of experience being an HPN physician; Kelly Green Corkins, with a dietitian’s take on the “ins and outs” of enteral nutrition; Gail Egan, an interventional radiologist speaking on central lines; Dr. Teresa Cutts speaking on GI motility disorders (via webinar); and Maria Karimbakas and Cassandra Pogatschnik, both dietitians, on diet for short bowel syndrome and emerging therapies in gut rehabilitation, respectively. Many thanks to our sponsors: Shire, Soleo Health, and ThriveRx.


LifelineLetter, September/October 2018


Oley Foundation: Port in a Medical Storm

Rosana Shah

This year my daughter, Parri, and I had the honor and privilege of being able to attend our very first Oley conference (it was my husband’s second Oley conference).

 Of course, there was acute apprehension regarding the travel and stay. The mum in me was worried about all the “what ifs.” What if she caught a cold! What if she caught C. diff! What if she caught HFM (hand, foot, and mouth disease)! You get the idea….My brain wouldn’t switch off.

I reached out to my friend Ann W. She tried to allay my fears somewhat, but they remained in the recesses of my mind until I let my guard down. The Oley Foundation, however, made every effort to allow caregivers to have some peace of mind. Knowing that a forgotten supply or piece of equipment could be replenished or an emergency was planned for, was extremely welcome.

Feeling Welcome and Understood

The conference evidenced what folks have been saying about it for years. It was chock-full of information, collective years of experience from many experts, and most of all people, young and old, with whom my daughter was able to identify.

Years of isolation melted away. All I could see, as people were exchanging stats and information, were nods, smiles, awareness, and insight. There was no need to waste time explaining the elemental stuff. You could say “TPN” without explaining what it was. After years of feeling like we were talking in “tongues” amongst the normals, here we were now with our tribe. No one had that dazed, trance-like expression. We felt heard and seen.

Parri with her new friend, Natalie.

My daughter had the opportunity to forge friendships with kids her age. The conference proved priceless for that reason alone. She had a magnificent time at all the kids’ activities. Kids can be so exhausting and it was a welcome break for us parents! Hats off to Ann, Marjorie, Andrea, Mary, and all of the other volunteers. You are saints!

I was able to meet Facebook friends I’ve been interacting with for years. What a treat! The warmth, understanding, and kinship that you gain in person is not easily expressed online. The investment in the friendship increases exponentially once you meet in person.

It would be remiss of me if I did not mention how beneficial the robust discussions at the breakout sessions were. The interactive format allowed us to get to know one another better and benefit from each other’s experience with our different teams. My only complaint: if only they were longer!

Transforming Lives

As for my fears, we did return home worse for wear. We did not catch anything on my “what if” list. Instead, we caught Oley fever: a yearning to see and interact more with the friends we made. My daughter is already planning her attendance at next year’s conference!

Thank you to the Oley Foundation, donors, corporate partners, and volunteers who make it possible for medically dependent families to have a platform to forge meaningful and transformative relationships. Quality of life and quality of care is positively impacted.

Rosana Shah is an Oley Ambassador volunteer, and would be happy to hear from you, or to tell you more about her experience at the conference or raising Parri. More about Rosana, including her contact information, on our Oley Ambassador pages.

LifelineLetter, July/August 2018 

Being Me

by Tiffany Dodd


Wondering what an Oley conference is like? Tiffany, a new Oley Ambassador, wrote this blog post about the 2013 Oley conference, where she felt she could be herself (May 2015, www.tiffadpositivity.blogspot.com, adapted with permission).


Tiffany with the stuffed dog she got at an Oley Auction

            In 2013, Javier and I went to Cape Cod on a “vacation” to a medical conference put on by the Oley Foundation. I was really hesitant at first because “medical conference” and “vacation” in my books did not correlate well. But it turned out to be one of the best decisions we have made. I could be me. I could walk around and not have to be so focused on whether any of my “problems” would occur. I did not have to act different to fit in. I walked around in my pajamas, my mask and my gloves, not feeling like I stuck out. I didn’t have to be self-conscious that one of my tubes may peek out. And I spent less time worrying about whether or not I was being stared at or if one of my tubes leaked or whether that smell was coming from me. Being me and leaving my insecurities on the back burner allowed me the time and confidence to make connections and get the most out of the conference.


               We saw people with IV fluids hanging on hangers and people with backpacks with lines showing. There were people of all ages and from all over the United States, and even abroad. For some, like us, it was the first conference and others had been to multiple Oley events.


               Because we did not find out about Oley until a short time before the conference, we were not able to stay at the hotel where the conference was taking place. There were a lot of times when we wished we could jump on an elevator, go to our room to deal with a problem, and come right back. That was not possible, but we made it work.


               Once we checked in to the conference, we collected our name tags, t-shirts, and bags. Everyone could put color-coded stickers on their name tags. Each one stood for something, like care taker or loved one, HEN or HPN patient, and so on. It was good, because you could see the sticker and know upon approaching where they fit into the dynamic. At check-in we got the itinerary. I was exhausted, so we decided to skip the welcome event. I’m pretty sure we went back to the hotel and passed out. When we saw the event posted on the Oley website this year [2015], we knew we should act promptly. I am happy that we do have a room at the hotel where the conference will be [in 2015], and we cannot wait.


               Everybody learns in different ways, and that is one of the reasons I found this conference to be successful. In the mornings they had a little continental breakfast outside the conference room and then everybody came together for the “main session.” There was one each morning for two days, and each had multiple speakers. I have a hard time focusing, and sitting in the same spot for a long time causes a great deal of pain. However, I know that seminar-like learning is the best way of learning for others. After the main session there was a break, during which lunch was served and the exhibit hall was open.


               In the afternoon, you had a choice of which “breakout sessions” you wanted to attend. Some of the topics were caring for your tubes, nutrition, clinical trials, swimming and bathing with catheters, and dating. The groups were much smaller than the morning sessions and very interactive. I found out that other people had a lot of the same questions I had. For example, I wear pajama pants most of the time. Due to my venting G-tube, I cannot wear pants that hug close to my skin. I also tend to wear tops that are dark and baggy, self-conscious my tube will show. In one of the sessions we went to, they touched on that topic, and a lot of people had the same concern. In this specific group, there were a lot of people that have been sick a lot longer than me. They have had more time for trial and error.


               For this trip, I had packed my normal apparel of pajama pants, but I had also packed a wildcard—a purple skirt, just in case. That evening we were attending a special dinner, and I wore the purple skirt and was glad I did. When we went home, I resorted back to pajamas but I started to include some long, loose-fitting skirts and dresses. Last year I even wore a bathing suit. On our trip this year, my suitcase will include a good balance of sleepwear and classier wear.


               Also going on at the conference during lunch time and early afternoon was something similar to a job or college fair, with vendors from different companies. We got a really nice bag and by the end of the conference it was full of brochures, samples, and fun memories. Companies made sure they got to engage with you.


               There were people from different home care agencies, others that had new products for HEN and HPN, and even the TSA was there, giving tips on how to get through security check points. Exhibitors caught your attention by having something fun to do or giving away little things. At my home care company booth, you got to use props to look like a pirate and have pictures taken in front of a cardboard pirate ship. We actually framed them and still have them. There also was a man making really good caricatures. I recently came across ours, and it still makes me laugh.


               The evenings were a time for meet and greets and exchanging stories. One of the nights was a cookout. We were sitting alone and a family—a mom, dad, grandma, and two kids—joined us. Making connections like that is the best part.


               Another evening was the silent auction. There was everything from handmade jewelry to gift baskets, and there were raffles. I bid on a large stuffed dog. At first it was a joke, but we ended up winning him. At the end of the auction, a little boy suggested I name the dog Hugo. So I did. The auction raised money for the Oley Foundation, so it was for a good cause. Javi and I are already talking about this year’s auction and what our budget is.


               Checkout day they held a brunch. We sat at an empty table and Javi went to get food. By the time he came back the table was full. A woman from Israel sat by us. She had come by herself because of the cost and because her child cannot travel well because of illness. She came to see what products might be available. She said companies will not deliver to Israel.


               I now know that people want to be approached and want to make connections. I never like to tell my story because I don’t like when people say, “Oh, I’m so sorry” and feel emotional for me. But I am hoping I will make more connections this year.


               I wanted to include briefly some very inspiring statistics of the big picture: This Oley conference welcomed over 500 people to Cape Cod, including 87 children, and 150 of the total were new attendees. There were people from Massachusetts to California, to Ireland, England, and Israel. There were close to forty exhibitors showing and teaching about new products and services. And the silent auction raised over four grand.

Lifeline Letter, January/February 2018

Roller Coaster Ride Leads Eventually to Oley

By Brian McCall

Brian feeding for the first time in public in the exhibit hall at the 2016 Oley conference.


My name is Brian McCall. I’m fifty-five years old, and I’m from Long Island, New York. My tale, as it relates to Oley, began in August 2005, when I took my family on a tour of Pennsylvania. We were going to visit a couple of amusements parks and had planned on stopping by a couple of companies that my company does business with. 


The Ride Begins

It was a wonderful trip. My daughter and I rode the big roller coasters and I got to meet several business colleagues. On the last day of our trip, I didn’t feel right when I awoke, but I drove home according to plan. Late in the afternoon, after unpacking, I really felt bad. I was over shape and out of weight (reverse that), so I thought I might be having a heart attack. I went to take aspirin.

Behold and lo, I could not swallow the tablets nor the water. It was off to the emergency room. After a night in the ER, it was determined I had had a stroke. They transferred me to a hospital in New York City for treatment. I had a procedure done, aspirated a few hours later, and was intubated and moved to a neuro intensive care unit.

After a couple of days, I had a feeding tube placed. I really thought nothing of it. I just wanted to get out of the hospital. With a hole in my throat for a trach and a tube sticking out of my stomach, I was transferred back to my local hospital, where I spent four more weeks going through physical, occupational, and speech therapy. The neurologist said my stroke was probably caused by whiplash from a roller coaster ride. Imagine that. I had so much fun I had a stroke!

Downs and Ups, Ups and Downs

I was discharged and sent home. Because I was put on Coumadin, a nurse came to my house once a week to check my levels. The doc adjusted my dosage accordingly. I attended outpatient therapy three times a week. The emphasis was on getting to walk again, and the speech therapist concentrated on therapy to get my swallow back.

The feeding tube was sort of “just there.” I hadn’t been given any tube care guidelines or anything. Sound familiar? My speech therapist had mentioned the Oley Foundation to me while I was in hospital, but I didn’t pursue anything at that time.

Anyway, for several months after my stroke, I was lucky if I put in 750 calories a day, and I lost about 120 pounds. My primary care doctor told me enough was enough, that I needed to get more calories and more water into me. I got on with developing my tube feeding routine. I upped my intake from three cans a day to about eight, and added more water. 

My first tube was a long, dangling tube with a mushroom-type bolster. I was told I would have to go a doctor to have it changed, and that I would need to be under anesthesia when the tube was removed. That was of no particular interest me, so I kept putting it off. That first tube had a heavy y-port, with a toll-free number on the side. After the caps got brittle and worn out, I called the number looking for a replacement port. 

The company told me they could not sell to the end user, and they did not offer any suggestions, except for me to contact my supply company. Well, I did not have a supply company, so I purchased a couple replacement ports off the internet. The ports have barbed fittings to push into the tube, so changing them was difficult. I would just cut the tube below the port and push in a new one. I did this several times, until my dangling tube got to be this little stub of tube sticking out. (See note at end of article on page 5)* It was time for a change. The doc I went to said he would place a tube with a balloon-style bolster, and future changes could be done in his office, with no need for the anesthesia. 

During that time, my sister who lives in Salt Lake City, Utah, said the Oley conference was being held there, and Rick Davis, who was an associate of my brother-law’s, was going to be there. Like me, Rick had had a stroke that knocked out the ability to swallow. My sister went to the conference for a day and told me all about it. That’s when I really started looking into Oley for support. I discovered they held an annual conference in places all over the country. I wanted to go.

I work for a swimming pool company here in New York, and the conference dates were always the week before the Fourth of July. Not a good time for me to take off. Conferences were held in Saratoga Springs, New York, and Cape Cod, Massachusetts—both within easy driving distance for me—but the timing was bad. I would check out the photos from the conferences and kick myself for not going.

Exciting Twists and Turns

To my supreme delight, the dates for the 2016 conference were July 5–July 9. I could go! The 2016 conference was being held across the country in Newport Beach, California, but I was determined to attend. I made plans to bookend the conference with a visit to my sister in Salt Lake. I booked my journey. Of course, nothing was direct. I was on eight planes in eight days.

I flew into Salt Lake on Monday July Fourth, and headed to Newport on Tuesday the fifth. I kept thinking of the line at the end of the movie The Shawshank Redemption, when Morgan Freeman says, “I’m so excited, I can barely sit still or hold a thought in my head.” That was for sure. I had never seen the Pacific, and I was hoping to maybe get a chance to dip my toes in someday. 

On the cab ride from the airport I stopped at the supermarket to get a case of water, and then it was onward to the Marriott. Not only had I not seen the Pacific, but I had never been to California. All the sights were wonderful and new.

I got myself situated and then I went to the welcome reception which was being held outdoors. I immediately met some acquaintances. However, I had only packed shorts and short-sleeve shirts (it was Southern California in July after all), and it got chilly once the sun set. I didn’t stay for the entire party.

The next day was seminar day, with a variety of topics, all of which I found fascinating. Then the exhibits and lunch began. I went back to my room and retrieved the Sanford Stand I had gotten from Master Chief Flach, got back to the exhibit hall, and sat at a table and poured in lunch. It was my first time ever feeding in public. I know some Oley members don’t have a problem with that. I’m just not able to overcome my modesty. But it was all very “normal” while in that big ballroom.

I got to meet and talk to several exhibitors and other Oley members. I met members that had testified in Congress, and when I got back to New York, I wrote the first letters I had ever written to my congressman. It was such a feeling of community.

That night, I went across the street to the big mall to buy an extra bag to carry all the goodies I had picked up.

The second day, I attended the morning seminars, and sat with Dr. Lyn Howard (an Oley Foundation co-founder). We chatted like good friends. She is a truly amazing lady.

One of the morning presentations was called “To Swim or Not to Swim.” I was particularly interested in this topic, because I love swimming in my own pool and, being in the business, I was very interested as to what the medical field had to say about swimming. I had read about swimming with tubes on the Oley site, but this was firsthand information. My ignorance arose when folks talked about “central lines” for parenteral (IV) nutrition. I have no concept or experience with such lines. I just know the tube into my stomach.

I attended the breakout session in the afternoon about swimming to add my two cents of knowledge regarding swimming pool sanitation. I felt that I contributed a little, which is a pretty rewarding feeling. Then it was off to the airport and two planes back to Salt Lake. I spent a few days in Salt Lake doing the tourist thing, and then two planes back to Long Island. I never did get the chance to get my tootsies in the Pacific.

Back Home

When I got home, I had the time to process my experience. I thought it was absolutely wonderful. One of the things that had been on my mind before the conference was the new ENFit® connectors that are being discussed for feeding tubes. Talking with the feeding tube manufacturers in the exhibit hall, who assured me they will still manufacture the current, “legacy” tubes, was very comforting. I have a Mic-Key button, and I like the catheter-end extension tube. 

I was delighted to hear that the 2017 conference will be held after the Fourth of July, and it’s in Old Greenwich, Connecticut. I know some folks had long, long drives to past conferences, but Greenwich is really sort of in my backyard. I look forward to hearing from and meeting some amazing people again that are doing wonderful work. I don’t think anyone wants life support from a tube, but thank goodness for the tremendous support the Oley Foundation offers. Help along way. Perfect. See you in Greenwich! 

*Editor’s Note: The Oley Foundation does not sanction the practice Brian describes, and cautions against buying tube parts from unknown sources off the internet. As Brian would agree, it is always important to get proper information and support.

LifelineLetter, March/April 2017

Friendships Grow at 2015 Oley Conference

Lynn Wolfson, Oley Ambassador

The knowledge, friendships, and support I received by attending the Oley annual conference was absolutely wonderful! I traveled to the meeting in Saratoga Springs, New York, with my nurse and service dog, Zev, from Fort Lauderdale, Florida.


At the conference, I met Rose Wu, a woman with whom I have spoken on the phone and have been Facebook friends with for years, but had never met. We both have the same disease and found much comfort and excitement in finally getting to meet each other.


In addition, I met another woman on enteral feeding from Atlanta, Georgia, who I continue to keep in touch with and to see a few times a year through lobbying together for digestive diseases in Washington, D.C.


The conference sessions were very informative. I learned how to better take care of myself and how to advocate better. In addition, there were roundtable sessions where we were able to share instances with other patients who have also encountered similar situations. It was so nice to find other people who truly understand what it is like not to be able to eat.


The social activities were very enjoyable. They provided another opportunity to meet other people from around the country with chronic illnesses and to discuss our successes.


These friendships have helped me become the strong and confident woman I am today. I no longer feel victimized as a patient. I have friends who truly understand the difficulties of having a chronic disease and not to be able to eat. We are able to support each other in good and bad times.


I am proud to say that I am now an Oley Ambassador, encouraging other patients on tube feeding to take care of their medical needs and to live life to the fullest.


LifelineLetter, March/April 2016

A Regular Guy: My First Oley Conference

Stephen Alan Boyar


     Steve and Melba relax between conference sessions.

On board the plane from JFK Airport to Orlando with my wife, Melba, waiting to take off for my first Oley conference, I sigh. I will never overcome my anxiety about getting through Security. I remember the scene from two hours ago.


There’s Something Wrong with Me

I’m certain I will be thrown in jail as a suspected terrorist. To defuse the tension I know I should announce to the TSA (Transportation Security Administration) agent ordering me to step into the body scanner that I have a feeding tube. I don’t want to. But I do—even though it’s none of his or anyone else’s business that I have a hole in my stomach and a tube hanging out of it.


Again the agent barks, Step into the scanner.”


Either he didn’t hear me or chose to ignore me. I tell him I have a letter from my doctor. He takes it but doesn’t read it, doesn’t even look at it.


Move into the scanner.”


They’re going to freak out when they see the tube looped and secured by a tube holder taped to my chest. This will look to them—as it would to me—like a bomb.


 Outside the scanner, the same agent demands I identify my bags exiting the conveyor-belt scanner. One bag has not come out, the one with my valuables. I tell him I want to wait for it, but he orders me to follow him, now. He needs to see the feeding tube, and so, he tells me, he’s taking me to a private room. How thoughtful.


 He walks ahead of me, fast, slowing down to kibbutz with a coworker. He’s not paying attention to me. I could run back, grab my wife, and flee to the safety of home. She’s overseeing the testing of each and every medicine bottle, can of food, bottle of water, syringe, and plastic cup in my medicine wheely. She is practiced at remaining calm and checking that every item is returned intact so I won’t go crazy on the flight from hunger, thirst, or the lack of pain medicine.


I was ambivalent about going to an Oley conference anyhow because I don’t want to be identified with people who I see as disabled. I didn’t want to see myself—or allow anyone else to see me—as anything less than perfect. A gift of my upbringing.


 But this year I had a change of heart. I’d been to another organization’s conference, also focused on illness, and one of the presenters has since been instrumental in changing my life for the better. I believe in education.


So, back at the airport, scratch the escape plan. I really want to go to the Oley conference—see what I’ve been missing. I say to the agent’s back, Do I really need to be without shoes?”


He stops, looks at my feet, and says, I didn’t know you left them behind.” It’s my fault. “Go back and put your shoes on.” What am I, his kid?


In the private room, I feel like the next step is a cell. Another agent joins us. I guess he’s the witness who will make sure the first agent behaves according to the rules. Or the two of them are in cahoots, happy for the opportunity to steal . . . what? They wouldn’t want to yank the tube out of my stomach. I doubt they could find a fence interested in hot feeding tubes.


I tell No. 2 I have a letter from my doctor. He’s less interested in reading it than the first.


Show me the feeding tube,” says No. 1.


This is it. The moment of truth. I understand why they want to see the tube. They need to confirm I’m not wired to blow up myself and everyone else on the flight. I do appreciate their diligence. However, if they only knew how I’ve fought for my life over the past fifteen years, they’d escort Melba and me to our gate with an honor guard.


I was treated in 1999 for squamous cell carcinoma of the left base of tongue, with metastasis to at least one lymph node in the left neck. Beam radiation, a neck dissection, and temporary radioactive pellets on the primary tumor site defeated the cancer. My team had saved my life but, unbeknownst to them or to me, they planted a time bomb that would destroy my quality of life. Eight years after treatment, I was diagnosed with late-stage, radiation-related dysphagia and dysarthria. I could no longer eat or drink safely or speak clearly. In 2007, aspiration pneumonia nearly did me in. My reward for surviving this second brush with death: a PEG feeding tube and ban on swallowing.


These TSA agents are just doing their job, and they don’t care about me, my double-survival story, or how their blasé attitude makes me feel. Like Peeping Toms, their eyes are glommed on to the shirt buttons I’m undoing. I lift my undershirt and show them my tube. They’re satisfied. I feel violated.


Melba and I allow an hour at the airport for this ignominy. Surely everyone going to the conference with a tube or intravenous port has had similar experiences. I wonder how they cope.


Alone No More

At the conference on Monday I join a focus group conducted by representatives of a company that makes nutritional products, including my formula. The reward is immediate. I meet a dozen or so fellow tube-feeders, as well as some of their caregivers, in a more intimate setting than the big conference meetings. I no longer feel like an outsider.


We focus-group participants are diverse—in ethnicity, age, hometown, type of tube and formula, and diagnosis that necessitates a tube. Most face significant challenges to get sufficient nutrition and hydration to survive, as well as to find healthcare providers with the skills and knowledge to help. The majority are hooked up to a feeding pump, many for the entire day. Most cannot take in enough formula the way I do, by bolus feeding,” infusing food a few times a day quickly, using a funnel and gravity. I have to carry a can or two of food and supplies when I go out; I have pain intermittently around the tube entry site; I endure day surgery every year or so for a tube replacement. In the future, however, when I am sad about having a tube, I will remind myself of this. If I think I’ve got it bad, most of my new tube colleagues have it worse.

So Many Children

People for whom this is their first Oley conference gather Monday evening for fun and games and tips on how to get the most out of the conference. The atmosphere feels like a birthday party for one of the many children of all ages running around for an hour free of the ever watchful eye of a parent. There are soda and chips, pretzels and candy for those who can swallow safely and for caregivers. Balloons kiss the low ceiling, with ribbons that invite a child to claim ownership.


Three toddlers capture my attention. One, a little girl, maybe three or four, scurries under a table and then around the legs of adults. She’s playing with a boy a little older than she. Wherever she moves, so goes her feeding tube, as if it were the wire of an old-fashioned microphone following a performer. She never trips on it. It’s long enough to go where she goes and somehow stay connected. I want to find her mother and father and tell them I think it’s wonderful they don’t overprotect their daughter, and let her be a child.


The boy wanders near the table where I’m sitting with my two adult partners in a silly but effective game devised to facilitate connections among strangers. The boy tells the woman next to me how old he is, and then asks how old she is. She answers, Fifty-three,” and he remarks how high this number is. I want to tell him I’m seventy-one—really surprise him—but he only has time to honor me with a hello and smile as welcoming as I’ve ever received. A person with a feeding tube is the same person he or she would be without it.


 The third child who captures my attention is a boy in a wheelchair, or maybe it’s a customized stroller. His eyes are big and drink in all that’s happening. I wonder if he’s able to talk because I don’t hear him say anything. His mother treats him as she’d treat any child. She’s to deliver a speech the next morning in which she will share the harrowing journey she and this beautiful boy have been on to keep him in this world.


These children will probably never have the years of pleasure I had before cancer treatment—eating my wife’s glorious cooking, quenching my thirst from a water bottle, bingeing on my mother’s maple walnut cake with thick chocolate icing at every one of my birthdays, even as an adult, until the advent of the tube.

How can I ever feel badly for myself again knowing there are so many children who rely on feeding tubes for sustenance? If they adapt with acceptance and grace, so can I.


Eye Openers

I think I know all I need to know about my tube and its accessories. But I don’t. I learn a great deal from the talks beginning on Tuesday at the main sessions, at a tube feeding workshop, and during conversations with the people in the Exhibit Hall booths. Read more..

LifelineLetter, September/October 2014

Oley Conference Enriches Our Lives

Pam Winter, Oley Ambassador


Every year I am amazed at how much this conference enriches our life. Not only do we make new friends and reconnect with friends from previous years, we receive life changing advice and help others along their journey. It’s not just about having fun (although we do have fun). During this conference alone, I was able to consult with three pediatric surgeons who specialize in short bowel and two dietitians. The advice they provided may keep our daughter, Ally, from a big surgery that would likely land her back on IVs.


Another big plus is learning about the newest research and innovations. I learned previously about research on growing your own intestine with stem cells and we heard this year how that is moving forward. But there are other new technologies as well! These things will take years to perfect but are likely to be available during our daughter’s lifetime. Doctors that are not in this field are still telling families that their short gut children will only live five years. This is what we were told and I hear this all the time…it’s still the standard line for many families new to this disease. The Oley conference gives us the true story and offers hope for our children’s future.


LifelineLetter, July/August 2014

Connecting with Others Helped Me…See Life’s Promise Once More

Lynda Bosworth


I have been on home parenteral nutrition (HPN) and hydration for almost two and a half years due to a serious accident. My husband and I were in the desert for four days without food or water. Very, very near death, we were saved…by human and divine miracles. Later I was saved by medical miracles at the hands of University of Arizona doctors, the miracle of HPN and hydration, and the emotional miracles of family, friends, home health care, and the Oley Foundation.


Help from My Friends

    Lynda Bosworth

My fabulous sister Bonnie and two very old girlfriends of mine attended the Oley Annual Consumer/Clinician Conference in Minneapolis, June 2011. Notes were taken—but better yet, Bonnie met Mary P., Dr. Darlene Kelly, Oley staff members, and many consumers who shared their stories of life after HPN. All the information Bonnie brought to me from the conference—and my talking to other consumers by phone during the Minneapolis conference—was the kick in the butt” I needed to put on my big girl panties and strive to be as normal as I could once again.


    I learned to do the HPN with hydration on my own. (I had been very fearful of bubbles in the tubing.) I decided my home health nurse could stop coming (love her as I do), and—wow—I was driving again and going to Pilates. I took my first overnight. I didn’t go alone, but I was doing it. In 2012, I was feeling confident enough to drive with my sister from Tucson to Redondo Beach, California, for the 2012 Oley Consumer/Clinician Conference.


The conference offers a chance to interact with a group of people who know, care, and want to help. The knowledge gleaned from consumers, staff, and medical connections is up-to-date, and they understand what a change of life we all experience. I like to say, being part of Oley is like being in a soft hammock or a bunting.


In My Own Time

I was told about Oley by the coordinator for the nutrition support team at the University of Arizona Medical Center in 2010. I didn’t want to, care to, or have the energy to get involved at that time, but when I was ready—about one and a half years after my major, major surgery—I was ready to be helped, and to help myself. My husband Tom and I, as well as my sister Bonnie and the friends who have always been there for me, are grateful for Oley’s existence.

LifelineLetter, March/April 2013

Connecting with Others Helped Me…Build a Support Network

Arthur Adler


Esther Ann Brown Adler

What could be bad about a weekend in Boston? That’s how I rationalized my late wife Esther Ann’s suggestion that we attend something called an Oley Conference. I personally had no desire to spend a summer weekend at a convention talking about ostomy and J-tube products. Much to my surprise, the convention was a wonderful experience!


Many of the seminars and products did not apply to our situation, but the camaraderie was overwhelming for Esther Ann and me. Here were people that truly knew what she dealt with on a daily basis.


Other than a particularly rough boating excursion to Provincetown, my strongest memory of our first Oley Conference was a sense of relief that there were thousands of good people handling issues like ours and working on solutions.


Esther Ann and I both were very happy that we had made the decision to attend an Oley conference and I would strongly urge others in our position to do the same.


Arthur’s wife, Esther Ann Brown Adler, passed away in 2010 from a motility disorder.

LifelineLetter, March/April 2013

Connecting with Others Helped Me…Find Myself Again

Amanda Singer


Amanda Singer with Michael Medwar at the picnic, 2012 Oley Conference.

It seems not so long ago that I first heard of Oley. With time, I discovered the many wonderful benefits of being a member. I had support through the Internet, newsletters, referrals, research studies, and more. In a time that seemed so dark for me, learning to accept the new challenges I faced each day, I was able to turn to Oley and its many members for advice—or just an ear to listen.


When I heard about the yearly conference, it seemed like the perfect opportunity for me to find myself again. I could finally meet so many of the individuals that had helped me in online forums; I could be in a place where everyone knew what it” was like, and for a few days, I could feel like it was okay to ask questions, stop hiding, and feel the love of a community that was overwhelmingly accepting.


Open Doors, Open Arms

My biggest obstacle was getting from Boston to Los Angeles, where the conference was going to be held. With generous donations from my local Kiwanis Club, and an open door from my cousin, who lived not far from the hotel where the conference was held, I made my way to Oley for the first time.


 From the very first steps I took into the hotel lobby, up until the Farewell Picnic on the last day, I was flooded with hugs and lots of love. I had left Boston with some extremely difficult medical decisions to make, and after returning home from the conference, I had figured out—with the help of new friends—what was right for me when it came to taking charge of my health care.


Becoming Involved

Without a doubt, I knew I would be returning to the annual conference. When I discovered it was going to be held practically in my back yard, I wanted even more, and to be as involved with the planning process as possible. A combination of what I had learned the previous year, along with various things I saw that could use a little sprucing up,” parts of my experience that I couldn’t wait to re-live, and ideas I had of my own that I wanted to contribute, I jumped on board, going from just an Oley member to an active one.


 It has been an incredible year for me, with plenty of ups and downs. This coming June, I am looking forward to an even better experience than the last conference. Oley is truly the face of HPEN, comprised of the most wonderfully spirited people that make it so special. I look forward to seeing familiar faces, as well as welcoming new, as we once again share laughs and stories, and attend great classes, events, and all the fantastic things Oley has to offer!

LifelineLetter, March/April 2013

Refreshed, Renewed by Oley Conference

Malik Saunders


Journal Entry: Thursday, Redondo Beach, CA

So today my three-day journey ends. I leave the conference refreshed, with new confidence, a new attitude, and new friends. Honestly, I didn’t know how I was going to fit in. To my surprise, I felt at home—actually, better than at home. I felt this is where I was supposed to be. I felt safe, safe in the arms of experienced people who had stories like mine, if not worse. I wasn’t the only one running to the bathroom…


A Look Back: Sunday

Mariyah (my fiancée /caregiver), her beautiful, spirited daughter Annie, and I got in Sunday evening, June 25. The hotel was beautiful. Our room was a little far, but worth the walk. We checked in and hit the beach. We found a fresh seafood restaurant, Captain Kidds. You can pick out your own seafood and they will cook it right there for you. As we ate dinner, I gazed out the window and thought, Wow, the Oley Foundation picked a beautiful place.” The weather was perfect, and I was surrounded by fresh seafood. Mmmm. We turned in early so we could be up and ready for registration.


The next morning I meet Cathy Harrington at the registration table. She greets me with a smile and says, “We have been waiting for you. Glad you could make it.” Lisa Metzger greets me with a warm smile, too, and makes me feel comfortable instantly. I receive my name badge with my green ribbon for first-time attendees and a brown ribbon for being an award nominee. Now you can see who is actually here for the conference by show of the name tags. I take a minute to look over the schedule, and I am overwhelmed by all the information. Mariyah tells me to take a deep breath and relax—we made it! Everything will be OK.


And everything is better than OK. I have met some amazing people who are Living, living Life to the fullest. In the past seven years, on more than a few occasions, I was told of the five-year mark—meaning statistically, after five years of HPN my mortality rate goes down. I didn’t really listen to that too much because I believe when God calls, He calls! Meeting people who have been on TPN over twenty years with very few blood infections and normal liver numbers inspired me to live each day with passion. I met people like the beautiful Lynda Bosworth, who has that movie star quality about her. Lynda and I met after an inspiring breakout session and and we instantly made a connection. Her sister was with her, and you could see and feel the love they share. Her sister said, She is a movie star,” pointing at Lynda. To myself I said, I knew it.” Lynda began to tell me her story. Lynda and her husband were on a picnic in the Arizona desert mountains when their jeep hit a rock and flipped over. They were stuck in the desert for four days. Theirs is a story of perseverance and true love. It was featured on a reality show called I Shouldn’t Be Alive” (Animal Planet). The title of the show was Till Death Do Us Part.”


Thank you, Oley Foundation for a wonderful time. And a special thank you to the sponsors and the people who donate to the Oley Foundation. We might not have been able to make this trip without an Oley travel grant. I appreciate you and I thank you. We are patiently waiting for next year…

LifelineLetter July/August 2012

Conference Benefits

Peter S. Lee


Peter & Donna Lee


If I was someone who had never attended an Oley conference (as I was last year), the biggest question I would have for a conference veteran would be, Was it worth the trip?” The 2011 conference was being held seven hundred miles away and would require almost twelve hours of driving one-way. Just like with everyone else, money is a concern, as well as getting the time off of work, etc.


Today, if anyone asked me if it was worth the trip, I would answer, Yes, it was worth the trip, and here’s why.” Alone, any one of the following things would have made it worth the trip.



By attending the conference, my wife Donna was able to spend several days with people who TRULY understand the challenges in her life that are a consequence of enteral (EN) feeding. Those who surround her at home love and support her, but it is entirely different to be around people who know from experience what you go through on a daily basis.


For those days, Donna didn’t have to put on a happy face and pretend her condition didn’t exist. The empathy and compassion shown both by the attendees and the staff was a lesson straight out of the scriptures. The people who worked the conference were clearly there out of compassion and a desire to support and assist the attendees.



The sessions we attended taught us things we did not know about tube feeding and other related topics. The question-and-answer portion of each session was invaluable. Many times it was a springboard to other topics, other sessions, and friendships.


Problem Solving

By a stroke of good fortune, the company that makes Donna’s EN pump was one of the exhibitors at the conference. Donna had had problems trying to get the pump to work when she put it in the carrying bag they had graciously supplied to her. Calls to their customer support did not get us past the problem as we could not figure out from their description on the phone what needed to be done (though they tried very hard to help us).


In five minutes, the company reps at the conference demonstrated what we needed to do to make the system work in the carrying bag. As a consequence, Donna is no longer confined by having to drag around her IV pole. She can use her pump in its small carrying bag to move around the house, go outside, go places with others, etc.



We made some wonderful new friends at the conference. Not people to commiserate with or to bemoan our lot with...I saw none of that at the conference. We met people who were inspiring and uplifting, and whom we could even joke with regarding the day-to-day details of EN and related issues. A special thanks to Oley President Rick Davis, and newsletter editor Lisa Metzger, both of whom went well out of their way to make us feel at home and to link us up with people who could speak with Donna knowledgeably regarding her specific health issues (which go beyond just the need for EN).



Donna was able to share her experiences to the benefit of several others at the conference. She was able to see that despite the health matters she must contend with on a daily basis, she still has much to offer others. Of course she has many other talents and personality traits that are a blessing to others, but this objective confirmation that she has much to give was an incredible lift to her spirits and her self-esteem.


Access to Specialists

We were able to speak one-on-one with doctors who have specialized in the types of health issues Donna suffers from (one of which requires her to tube feed). We have been through countless doctors and specialists who have done their best to help, but have not found anyone who is knowledgeable about the entire spectrum of issues Donna has to contend with. In an impromptu twenty-five–minute discussion at lunch, one doctor pointed us in a direction regarding Donna’s health that has not been thoroughly explored in the past. He explained why he feels this body system could be involved with the types of issues she has had and is consistent with the manner in which her issues have manifested themselves.


 Of course this new line of investigation may not turn up anything, and even if it does, we know that her condition is most likely not curable. But the hope he has given us is that we haven’t explored all of the options available to us yet, and further investigation might indicate treatment that could improve her quality of life. We were both at our wits’ end prior to the conference because we believed there was still more to look into regarding her health, but we could not determine a useful direction. Based upon the discussion we had with this doctor—who very graciously spent part of his lunch time with us—we now have another direction to investigate, and renewed hope as well.



As a primary caregiver, you tend to spend a lot of time worrying about your loved one. Sometimes you go long stretches without getting a chance to unwind and decompress from it all. I foolishly thought when these problems first arose that I would be able to rest when Donna was in the hospital, but experience has shown me that she tends to be more in danger in a hospital than when she is at home due to the fact that her problems are complex and the hospital staff is trying to care for so many different people at one time. One unexpected benefit of attending the conference was that when Donna was with other people at the conference, I found myself relaxing.


I knew that the people she was with both understood what she was going through and had the knowledge to know what do if a problem arose when I wasn’t with her. In short, I knew she was in good hands.


Definitely Worth the Trip

By the time the conference had ended, I was amazed at the number of times over those few days I had said to myself that this thing” or that person” alone would have made the trip worthwhile. I am so grateful we had the opportunity to attend.

The Oley Conference: The Benefits of Meeting Others

Cynthia Merriam


I have a partner who has been on parenteral nutrition (PN) for sixteen years. He has never had the opportunity to meet anyone, or share what his life is like, living on PN. He had never heard of the Oley Foundation or even considered sharing his experience with anyone or asking any questions other than to his medical providers.

Cynthia and Ronnie enjoyed meeting others who understand
their challenges, and learning different viewpoints.


At the Oley conference in Saratoga last year, he was in awe... sitting and listening to others who live as he does. Listening to the issues that only someone with this alternative nutritional need could understand was almost overwhelming for him. He was very interested in the information that he hoped to share with his providers regarding the new research being done in this area.


I cannot tell you how nice it was to know that when you discussed things like PICC lines, the need for access to bathrooms, and infections, people understood. The networking was wonderful. Ronnie and I met a couple who were also from Canada. I believe any person of any age should experience what Oley has to offer. They need to have the opportunity to attend a conference, to be exposed to different viewpoints.


I found that a couple of the sessions were not appropriate for first timers, due to the amount of information being shared. If you had never been exposed to the material before, it was difficult to relate to it. But the conference was well put together... if that is the correct term... or well done!


The scholarship for first time attendees is an excellent program. It gives a person who might hesitate to go due to the expense of attending a chance to check it out.” I know Ronnie and I both hope to be able to attend the next conference that is on the East Coast.


Who should attend? In my opinion, the conference can meet the needs of both those new to PN and those who have been on it for a while. I definitely believe the Oley conference would be a great help to someone who is new, just to help with the emotional changes that occur with having to live an alternative nutritional lifestyle. They would be able to establish a network and contacts. But I found it nice to watch the people who come often reconnect with the friends they have made. I think that every year it is helpful for you to get recharged” and keep up with the changes in the field. So, even Ronnie, on PN for sixteen years, felt that he benefited from it.


We also enjoyed the exhibitors. It is interesting to see the new products and services that are available.

LifelineLetter, May/June 2011

Oley in Vancouver 2011: A Regional Conference Experience

Kathie Douglas


Since I live in Edmonton, Alberta, and my parents live about an hour outside of Vancouver, the one-day Oley conference I read about in the newsletter seemed like an exciting chance to meet people who had the same, or similar, health issues as me and spend some time with my family. I didn’t know anyone on parenteral nutrition (PN)! I also knew it would be a great opportunity to meet some of the specialists who were scheduled to talk at the event.

Katie exchanging ideas at the meeting.


The information presented at the conference was incredible. The patients who’ve spent years on home tube and IV feeding spoke clearly and enthusiastically about their experiences. They had all gone through some horrific times and conquered in the end. They gave me so much to be thankful for, such a deep understanding of why this new way of life wasn’t a curse...but a gift. I was in awe of our speakers.


Then there were the roundtable discussions, where I learned more than I could possibly have imagined. I was a little confused about one of the discussions at a roundtable, because people described a procedure that differed from the one I followed. They explained it to me, and when I got home I spoke with my nurses. The next delivery from my home care company came with a note saying that due to changes in protocol, PN patients were to follow the procedure I had learned about in that discussion. What a great thing to learn! I also found the discussions lively and stimulating.


There was happiness in the meeting room and I could see lots of joyful reunions between people who had met at previous conferences. The organizers of the event were warm and welcoming. I can’t say enough about how they made me feel. There was also a small trade show” type display, where I found many items that were intriguing. I’m investigating a few in regards to my own PN.


I want to take this time to thank the Oley Foundation for presenting all of this, including breakfast and lunch at no cost to patients and their family members. It was an unbelievable day for me. I came away excited to go to the next conference. I will go a little better prepared with ideas and questions.


I’ve made a great friend, found some tremendous information resources, and have come home with a whole new attitude towards my life with PN. As my doctor said to me the first day of PN when I was a little touchy, It has given you back your life, now you need to put it into perspective.” It wasn’t until the Oley conference that her words clicked and my attitude changed from pitying myself to being ever so thankful at being given this second chance” at life.


LifelineLetter, March/April 2011

At Home at the Annual Oley Conference, A Parent’s Perspective

Jennifer Rath


     Austin met Ellie (left) and other friends with bags and lines at the meeting.

Last year was our first Oley conference. The decision to attend the conference was not necessarily an easy one. I LOVED the idea of meeting other families with kids who were HPN and G-tube dependent; of learning about the latest research and information about how to maximize my son’s health; and of meeting some of the people in person who had educated, supported, and inspired me after Austin was born with Short Gut. But truthfully, the first thoughts that popped into my head were, Can I deal with airport security and flying with him? How will I manage getting all his supplies to the conference and trying to do his care while attending a conference? What if he has a medical emergency while we’re out of state? And, can I really trust someone else to watch him in childcare while I attend some of the seminars?” I think I forgot that I would be surrounded by people who have lived in our world, and who could help us get through any challenges.

       Austin (right) meeting long-time consumer Don Young at the 2010 Oley Conference.


I knew I had to get Austin’s input on attending the conference to help make the decision. I explained to Austin, who was almost four at the time, that there was a special conference where people who have ostomy bags, G-tubes, and central lines like him all get together to make friends and learn about how to stay healthy. Did he want to go? He was initially in disbelief. There will be a lot of people with bags and lines like me?” he asked. He then started shouting, Yes, I want to go to the ‘Bag, Line, and G-tube Conference’!” And so, in a leap of faith that everything would work out, we made our reservations and started planning. As the conference approached, Austin told me, Mom, you’re not going to fit in there, but I will.” I realized how important it is, even at this young age, to be surrounded by people who are just like you.


Most everything went smoothly, from flying to shipping our supplies directly to the hotel to the childcare, which Austin loved! There were a few challenges—a middle-of-the-night ostomy explosion and forgetting to have formula shipped—but they were solvable problems. I learned so much and met so many great people that my expectations were exceeded, and I was so thankful we made the trip. For me, the most amazing moment was meeting Don Young (who had been on TPN for thirty-five years!) and getting a picture of Austin and Don together.


Within a week of last year’s conference ending, Austin began asking when we could go to the next ‘Bag, Line, and G-tube Conference.’ We’re planning on going, and we hope to see you in Bloomington, Minnesota!

LifelineLetter, March/April 2011

Wouldn’t Miss an Oley Conference

Terry Edwards


One of the true bonuses of having Oley as a resource for me and other tube and IV feeders is the annual conference. I had attended two smaller regional conferences before, but the annual conference was both a chance to relax and an opportunity to learn. Last year we all met in sunny San Diego and it was terrific!


Terry’s Story

     Terry chatting with Dr. Howard at the conference.

Due to a tumor surgery about four years ago I am 100 percent reliant on home enteral nutrition (HEN) for both nutrition and hydration. I stumbled across the Oley Foundation on a Google search and credit Oley and the mini-conference I first attended three years ago in Phoenix in helping me get my act together to deal with my challenges.


My first full summer conference was last year, and, like the mini-conference, it went far beyond my expectations. I was failing to thrive on my HEN formula and losing weight despite pumping in 4,000 calories a day. The next step was going back on home parenteral nutrition (HPN).


After discussions with both speakers and product representatives at the Oley conference, I went home with a new list of suggestions for my doctor. The suggestions resulted in a change and the tables have turned in my favor. The knowledge collective” of the group is outstanding!


Worth the Effort

For those of you who are considering attending this year for the first time, my advice is simply, Do not miss it!” Yes, it can be a logistical nightmare traveling with all our HEN or HPN stuff,” but the hassles are well worth it. With all that is going on in our lives that revolves around dealing with our feeding issues in an eating world,” it is a true gift to spend time with a group of people who are in the same situation. 


Last year’s program hosted speakers on research, coping, care giving, and special issues.” If you had told me four years ago that I would be at a seminar on diarrhea, I would have told you were nuts. But now such topics are of special interest to me. No where will you have the opportunity to surround yourself and your family with this level of expertise and support—and have a really great holiday at the same time.


For those of you with children, either as consumers or part of a consumer’s family, the experience has got to be a priority. I think being around fellow attendees would help children realize that there are ways to lead a very normal life and to perhaps make some new friends. There are special events for the kids, and judging by the stories and smiling faces last year, they had a blast!


And Worth Returning

For those who have attended before, I am sure you will move mountains to be there. The fellowship and tips are invaluable, and as we know, working through a life that involves tube or IV feeding is a continual learning experience. There is no better forum to soak up some sun and support at the same time.


Last year at the conference my G-tube cracked just below the fitting and I sprung a leak! I was making plans to get to the hospital when someone recommended just applying some Krazy Glue® over the hole as a patch. That got me from San Diego to Vancouver without a problem. Now I carry a tube in my briefcase!


Chance to Soak It Up

The program is always a great collection of information, but it is the chat time” and dinner table talk that allow us all to compare war stories and just be among fellow consumers.”


There is something for each and every one at these conferences. I urge you to surround yourselves and your families with a week of sun, fun, and a chance to learn something all in one. I look forward to seeing you there!

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 heros and look forward to renewing friendships in Salt Lake City.


Kinship, Courage Found at Oley Conference

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.

2010 Conference Exceeds Expectations

Gerald L.


What can you expect from an Oley annual conference? In a nutshell, learning opportunities—formal and informal—and a chance to meet and share stories with other home parenteral and enteral (HPEN) consumers and families. The presentations offered at the conference (and there are many!) are coordinated to bring HPEN consumers and their families information on topics as diverse as basic care to the latest research and coping to pain management, while the social activities bring attendees together in easy, comfortable, fun settings.

One attendee’s story:

I started on home parenteral nutrition (HPN) about seven years ago, initially as a temporary measure to obtain bowel rest. Over the years it evolved into a more permanent form of nutrition. I discussed the pros and cons of HPN with my family and I remember feeling a little lonely, as if I were the only one in this situation.


After I’d been on HPN about two years, my aunt found out about the Oley Foundation and told me about the Web site. I started reading about all the programs Oley has to offer and the profiles of other people who live on HPN, including some who’d been on for thirty plus years! I shared this information with my wife, who was also excited, and we both decided we wanted to meet other Oley members at the annual conference. For one reason or another we were unable to attend until the 2010 conference in Saratoga Springs. This was indeed an amazing opportunity for us.


The conference was unique and multi-faceted, and it addressed the various needs of the consumers—whether the needs were emotional, physical, or medical based. Upon arriving at the conference we found the Oley members to be friendly and inviting. They made us feel very welcome.


It was an amazing opportunity to meet and interact with other people in similar circumstances. It was the first time we were able to socialize and not feel confined or restricted by my condition. In addition to the wonderful consumers, the medical faculty was truly remarkable. From their care and compassion to their expertise, it was a great opportunity to learn about the latest medical advancements in the world of HPEN.


My wife and I both felt very comfortable discussing our concerns and asking our questions to medical staff and consumers alike, as they appeared to genuinely care about our well-being and were able to relate well to our situation. The interaction between faculty and consumers appeared to be based on a partnership; consumers contributed valuably and played an active role in their care.


Upon the conclusion of the conference we felt more empowered to cope with the situation we have been dealt. It taught us what is required to balance my HPN needs while leading a normal and fulfilling lifestyle. It was truly encouraging for us to meet people who live rich and rewarding lives while dealing with similar health issues. We were able to learn many valuable tips from consumers and faculty and staff alike, and have made several life-long friends. I hope that one day soon I am able to share some of this information with other new HPEN consumers. My wife and I now understand that we are truly not alone.

Thoughts from a First-Time Conference-Goer

Jodee Reid


Packing up for four days in Florida is no easy feat with a parenteral nutrition–dependent child. The only consolation was that we were heading to the Oley conference and, if we forgot essential medical supplies, someone else was bound to have what we needed.

Matisse and Jodee at the Oley Conference.

From New Zealand to Florida

Matisse had been born with chronic idiopathic intestinal pseudo obstruction and her only chance of survival was to be put on 24/7 parenteral nutrition (PN). We lived in New Zealand, a country of just four million people and very few on home PN, and were very isolated. I, of course, found Oley on the Web. I was envious of those who could meet to discuss and share experiences in person! It was a dream of mine to attend an Oley conference.


About four years ago my husband and I made the difficult decision to come to the United States so Matisse could be put on a waiting list for a small bowel transplant. So here we were in Pittsburgh, waiting for organs and just a short flight from Florida, the location of the 2009 Oley Consumer/Clinician Conference.


Not sure that I was really willing to make the trip on my own with my chronically ill child, I applied to Oley for a first-time conference-goer travel scholarship. I didn’t really expect to win. A few weeks later I received a phone call from Cathy Harrington in the Oley offices, telling me that we had won a scholarship—wow! No more excuses!


Warm Welcome

When Lesley, a Florida native and regular Oley conference-goer, heard that we would be attending the conference, she offered to collect Matisse and me from the airport. This was wonderful. I did not have to worry about trying to lug PN, supplies, and luggage into a taxi—plus Lesley has a daughter a little older than Matisse and they immediately became great friends. This is what the conference is about.


Matisse was so excited that she would finally meet others like her, she could hardly contain herself. Being a child on PN is very isolating, and she is now at an age where she realizes she is a little different.


PN Down Under

On arrival we checked into the Trade Winds Island Resort in St. Petersburg, dumped our bags, put the PN and medication in the fridge, and headed to our first meeting. It was for Oley Regional Coordinators (RCs). I attended on behalf of Brenda Dunn and Parenteral Nutrition Down Under (PNDU), representing New Zealand and Australia.


Matisse and I were a little late and quietly entered the room, trying to remain anonymous; after all, I was not entirely sure we belonged here as New Zealand and Australia were unofficial territories for me. I whispered to Joan Bishop, Oley Foundation Executive Director, that I was Jodee from New Zealand. Joan loudly announced, And this is who I was telling you about!” Everyone in the group turned and welcomed Matisse and me. It turned out that Joan had just been telling the attendees about a small group down under (PNDU) who wanted to join Oley as an international alliance. We were warmly welcomed, and from that moment on I realized we were among friends.


Minority Are Majority

Matisse Reid

Those of us without tubes, lines, and bags were the minority at the conference, and this was great for Matisse. For me the friendships formed with other parents and the information shared by adult PNers was priceless.


I cannot believe I had debated with myself about attending the conference. I am a seasoned HPN mom now, with nine years under my belt; I am pretty confident with all things IV and was not sure there would be much at the conference that would interest me. Boy was I wrong! Although we don’t often feel it, the world of parenteral and enteral nutrition is changing; new information is regularly coming to light and the Oley Foundation keeps up with these changes. The conference offers great speakers and round table events to address current issues and practices.


Matisse spent much of each day having a blast in childcare provided by Oley volunteers, which allowed me to attend these speaking events. At night we partied, with the silent auction being a highlight, as well as the Beach Party. There was never a dull moment. We came home exhausted, but totally fulfilled with knowledge and friendship.


Ready to Go Again

I realize that for many, attending an Oley conference is out of the question. However, if you are putting it off because you think it is just too hard, think again. I have already booked for this year. Matisse has been looking forward to the conference since she arrived home last year. We cannot wait!

2010 Regional Conference in LA Very Helpful

Susan Plumer


This was the first time I had attended any conference since I became sick and needed to go on PN (parenteral nutrition) permanently in 2002. I was very pleased and appreciative of every aspect of the conference. Drs. Ament, Farmer, and Ngo made excellent presentations that were very informative. The information on new trends and future possibilities in treatment—such as the omega 3 lipids to help avoid liver failure, especially in children, and possible surgical interventions—was all new to me.


The breakout sessions were also very good, and I picked up helpful tips from Marianne Opilla’s program on catheter care which I put to use right away. I’d been having trouble with irritation and itching under my dressing, and she suggested I get a different kind. I talked it over with my supplier and now have one that is much better!


Most of all, the conference provided the opportunity to talk with other patients. It gave me a broader perspective on how people deal with their need for parenteral nutrition, whether adults or parents caring for their children, and it was very heartening and helpful to be able to talk about day-to-day issues with others in my situation. 


Thank you also for all the care shown to the children attending the conference. Thank you to all who made this conference possible, and I hope there will be other conferences in S. California in the future.”

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.


Updated 11/15/17


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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