September/October 2022 LifelineLetter

SEPTEMBER/OCTOBER 2022

Tube Talk Oley Calendar

Living with home parenteral and/or enteral nutrition (HPEN)

The Redeeming Power of Art

What’s Inside: Oley Corner

LifelineLetter

How repurposing medical supply discards and other found items fostered creativity and hope for one parenteral nutrition consumer Page 2 Page 3 Page 4

Community Enrichment Programs Page 5 Rare Pediatric GI Lodging Assistance Program Page 6 Special Pullout: Feeding Tubes and Supplies Are Changing: What Consumers and Caregivers Need to Know Pages 7–10 Welcome New Oley Ambassadors Page 11 Clinical Practice Update from AGA Page 14 Donor News Pages 14–15 Important Announcement Page 16

Mica Coffin wheelchair to get around. I had been a straight A student majoring in accounting, but now I couldn’t In 1989, I was critically injured in a car accident. even multiply two-digit numbers.

The doctors lost me twice during the My biggest hobby had been cooking. first surgery but were able to revive me.

I had over two hundred cookbooks in I was only given a 5 percent chance my collection. But now I could only eat of survival and took forty-four units Jell-O and popsicles. I couldn’t even of blood the first night. I had four watch TV because seeing commercials more surgeries and ended up with with food in them caused me such grief. only eighteen inches each of small and large bowel, and a jejunostomy.

My whole life had changed, and the After five weeks in the hospital, I was future seemed hopeless. I felt I had lost finally able to go home. all the things that made up my identity.

In the weeks and months that I also felt disconnected from people. I followed, I grieved many losses. My was living in Michigan, but on vacation daughter was three months old when I in Arizona when I had the accident.

Mica Coffin had the accident, and I was no longer We moved to Arizona so that I could able to nurse her or care for her. I had been very continue with the same doctors and home infusion active—hiking, camping, playing football with my team. This meant that I had no friends. ten-year-old twin sons—but now I needed a Redeeming Power, cont. pg. 12

Oley Foundation and HPN Consumers Highlighted at the ASPEN 2022 Nutrition Science and Practice stage presentation. In addition, we celebrated Oley Conference In March, staff and members of the Oley Foundation participated in the 2022 Nutrition Science and Practice Conference of the American Society for Parenteral and Enteral Nutrition (ASPEN). The Oley Foundat i o n p r e s e n te d a pre-conference symposium about the history—and future—of home parenteral nutrition (HPN); networked with attendees at the Oley booth in the exhibit hall; hosted a book signing with three of ASPEN President Gail the winners of the Cresci presenting award Baxter-sponsored to Bettemarie Bond 4EverBold contest; and highlighted these contest winners in a center

Ambassador Bettemarie Bond, winner of the Lyn Howard Nutrition Support Consumer Advocacy Award.

Over three hundre d conference attendees joined us for the Oley-coordinated symposium “Perspectives on HPN Through Past Decades and into the Future,” sponsored

by Takada. Presented by highly respected nutrition support Janie, Olivia, and clinicians, the proTrinity at the Oley gram began with booth at ASPEN 2022 the history of HPN and moved through current practices and approaches to cover

ASPEN 2022, cont.pg. 6

Oley Corner

LifelineLetter September/October 2022 • Volume XLIII, No. 4

Publisher: The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054 (518) 262-5079, Fax: (518) 262-5528 oley.org Executive Director: Beth Gore • beth.gore@oley.org Executive Director Emeritus Joan Bishop • bishopj@amc.edu Editor, LifelineLetter; Director, Community Engagement: Lisa Crosby Metzger • metzgel@amc.edu Director, Education & Initiatives: Amy Tarpey • amy.tarpey@oley.org Administrative Assistant: Cathy Harrington • harrinc@amc.edu Member Coordinator: Mary Wootten • mary.wootten@oley.org Science & Medicine Advisor: Manpreet Mundi, MD Medical Director/Co-Founder: Lyn Howard, MB, FRCP, FACP Oley Board of Trustees: Kelly Tappenden, PhD, RD, President; Steve Atkinson; Lisa Epp, RDN, CNSC, LD; Shirley Huang, MD; Vanessa Kumpf, PharmD, BCNSP, FASPEN; John Mahalchak; David F. Mercer, MD, PhD, FRCSC, FACS; Sharon Rose, RN Oley Advisory Council: Rhonda Arends; Jane Balint, MD; Kevin Baskin, MD; Melissa Bill; Elizabeth Bond, RN; Lynda Bosworth; Phila Breeding, RN; Alan Buchman, MD, MSPH, FACN, FACP, FACG, AGAF; Marcia Denenholz; Terry Edwards; Paula Foiw-Washesky, RD, LDN, MBA; Madalyn George-Thiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN, CRNI, VABC; Joy McVey Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, MD; Sue Koprucki; Jack Leibee; Laura E. Matarese, PhD, RDN, LDN, CNSC, FADA, FASPEN; Russell J. Merritt, MD, PhD; Ann Michalek, MD; Jay M. Mirtallo, MS, RPh, BCNSP, FASHP; Laurie Reyen, RN, MN; Vicki Ross, RD, PhD, CNSC; Trish Skiendziel, RD, LD, CNSC; Michael Smith; Bob and Mary Smithers; Ezra Steiger, MD, FACS, FASPEN; and Marion Winkler, PhD, RD, LDN, CNSC Subscriptions: The LifelineLetter is a bi-monthly newsletter sent free of charge to those on home parenteral or enteral nutrition (HPEN). There is no charge for others as well if they receive the newsletter electronically. Items published are provided as an open forum for the HPEN community and should not imply endorsement by the Oley Foundation. All items/ads/suggestions should be discussed with your healthcare provider prior to actual use.

Correspondence can be sent to the Editor at the address above. Medical/ scientific content contained herein has been peer reviewed by an Oley advisor or trustee.

2 — LifelineLetter • (518) 262-5079

Our Mission ...is to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

The Oley Foundation provides its 27,000+ members with critical information on topics such as medical advances, research, and health insurance. The foundation is also a source of support, helping consumers on home IV nutrition and tube feeding overcome challenges, such as their inability to eat and altered body image. All Oley programs are offered FREE of CHARGE to consumers and their families.

Oley Foundation Programs • LifelineLetter • Peer to Peer Support • Conferences and Webinars • Resources to Promote Living Well on Tube Feeding and IV Nutrition • Equipment Supply Exchange • Advocacy and Awareness Resource Spotlight: Oley Kidz Klub virtual meetings are back!

Oley Kidz Klub is a safe virtual meeting space where kids can get together to have fun and not worry about explaining their lines, tubes, pumps, or backpacks. Siblings are invited to participate, as well as children who have family members on medical nutrition or are touched by medical nutrition in any way.

Starting in 2023, the virtual Oley Kidz Klub will meet quarterly, with Oley Ambassador Amber Cox as host.

Watch your email and the Oley website for information.

At the last meeting, held shortly before Thanksgiving, participants made a fun craft.

Other typical activities include a scavenger hunt, show and tell, and, if there is enough time, sharing seasonally themed jokes.

For more information, email Oley staff member Mary Wootten mary.wootten@oley.org

Last year’s Thanksgiving craft, Colton’s Thankful Tree

September/October 2022

Tube Feeding Tips

Tube Talk

Send your tips, questions, and thoughts about home tube feeding (home enteral nutrition, or HEN) to metzgel@ amc.edu. Information shared in this column represents the experience of the individual and, while medical information is reviewed by an advisor, should not imply endorsement by the Oley Foundation. The foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.

On-the-go with Biotene Spray

Steve L.

I have found many solutions that allow me to continue my active life since I had my feeding tube placed. I run several times a week, I swim in the ocean, I bike, I lift weights. When I have an issue, I find a solution. For example, I cannot drink water when I exercise. My mouth gets quite dry and uncomfortable.

So a few months back I had a brainstorm: carry Biotene spray in a small bottle. Now when I run or bike, every fifteen minutes or so I hydrate my dry mouth with a few sprays of Biotene. . . . Another problem solved.

—Steve L.

Low-Profile G-tube Loosening

Valinda, whose son is on tube feeding, wrote in to ask, “Why does a low-profile G-tube become looser and leak when my son is sick or on antibiotics?”

Oley’s clinical advisors weighed in with possible causes, and tips for what to do when a low-profile G-tube leaks.

Often changes in the abdominal area mass are the culprit when a low-profile tube is leaking. The stem length of the tube is measured exactly for the individual.

Because of this, constipation, vomiting, diarrhea, weight loss, “bloating,” or fluid retention can change the thickness of the abdomen, and thus make the G-tube tighter or looser.

Another potential cause, although less common, is antibiotic or anti-inflammatory medication use. Some antibiotics have an anti-inflammatory nature to them, and it is possible that this could impact any normally present swelling in the visceral area of the stoma.

Try adding additional water to the balloon to adjust the fit Of the button, keeping the volume in the balloon within manufacturer guidelines. Make sure to discuss the issue with your care team if this solution doesn’t work.

Properly fit low profile j-tube, bottom left, with g-tube above.

Volume XLIII, No. 4

Coram® is here for you.

At Coram, our dedicated team of clinicians and pharmacy staff provide personalized support and ongoing care to our home parenteral and enteral consumers.

• Timely updates on product availability and substitution options.

• Dedicated travel liaison to help make traveling and airport screening smoother.

• Enteral consumers can choose to receive digital refill reminders and refill orders online.

Visit CoramHC.com to learn about other ways we can support you.

Want to get started with Coram? Talk to your doctor or call us at 1-800-423-1411.

Coram® CVS Specialty® Infusion Services (Coram) ©2022 Coram LLC. All rights reserved.

75-58117A 101422

(518) 262-5079 • LifelineLetter — 3

Oley News

2022–2023 Oley Calendar Oley2022: A “Fantastic Way” to Please check and oley.org or other appropriate websites for the Connect Learn

most up-to-date information the events listed below.

Oley2022, “Alive, Well, and Evenon Better!, ” was hosted virtually in

pioneering novel gi solutions with a one tract mind At 9 Meters, we go further to create innovative treatments, building a brighter future for patients with short bowel syndrome (sbs).

August. Over the three days, participants heard from fellow enteral Ongoing: being accepted for siblings, Oley Tim and parenteralApplications nutrition consumers, caregivers and as well Weaver Camp Scholarship.

Note: scholarships as experts in the field of nutrition support. If you missedwill anybe of the honored at atoo later in the event of a coronavirus content, it’s not late date to watch. complication (i.e., camp closures, illness, self of Here’s what a couple of people who COVID-19 attended several sessions Oley2022 thoughtquarantines, of the experience: or mandatory etc.).

“I loved the virtual Oley conference. Having a choice between December 1 (and then failure, the first of every parenteral nutrition, intestinal andThursday enteral nutrition [tracks] month): Nutrition Group 4 like All hearing Feeding was an excellent idea. Now I really Dr.Tube/TPN Kishore and all the advances in intestinal care, but splitting theAmbassador conference into Support Group (virtual), hosted

by Oley separate was wonderful.

Crystalthemes Killian* “I loved the ‘show and tell’ aspect of the virtual topics in the home tube feeding/enteral The extended questionThursday and answerof periods December 8track. (and then the second everywere especially great.

Judging by the questions asked, there’s definite need month): Tube Feeding/TPN Support Group fora Patients forand that.Caregivers* (virtual), hosted by Oley Ambassador “I would Rudzin like to see more virtual events. For me, it’s very easy to Barbara schedule my attendance and choose which topic I’d like to join.

“Overall, I thought thethen 2022 second virtual conference wasofexcellent.

December 14 (and Wednesday every It reflected a lot of hard work from the Oley staff.

I hope others had a month): Young adult (ages 18–35) support group* (virsimilar positive experience. ” tual), hosted by Oley Ambassador Darla Burr

December 22 (and then the fourth Thursday of every month): TPN Support Group for Consumers and Caregivers (virtual), hosted by Amber Gates* February 6–10, 2023: Feeding Tube Awareness Week February 7, 2023: Oley Webinar, "Managing Tube Feeding at School and Work" February 28, 2023: Oley Mini-Meeting, “Listen to Your Gut and the Experts: HPEN Advice and Updates”

www.9METERS.com

April 20-23, 2023: Oley exhibiting at American Society for Parenteral & Enteral Nutrition (ASPEN) conference, Las Vegas, NV, and virtual March 25–29, 2023: Oley exhibiting at National Home Infusion Association (NHIA) conference, Washington, DC April 1–4, 2023: Oley exhibiting at Infusion Nurses Society (INS) conference, Boston, MA

© 2022 | 9 Meters Biopharma, Inc. All Rights Reserved NMB-US-0005-21 v2

4 — LifelineLetter • (518) 262-5079

*For more information on support groups and Kidz Klub meetings, go to oley.org/SupportGroups; for other meetings, email harrinc@amc.edu or call (518) 262-5079.

September/October 2022

Oley News

Community Enrichment Programs Education, Connection, and Hope through MiniMeetings and Webinars Oley’s Community Enrichment programs offer a variety of opportunities to learn and engage with other members virtually. Oley webinars cover a singular topic in one hour, often featuring an expert clinician. Mini-meetings are a longer format, in which several topics are covered over three to four hours, and may include educational topics, consumer stories, sponsor-coordinated sessions, and interactive breakouts or Q&A sessions.

Both webinars and mini-meetings are coordinated for consumers and family members/caregivers, but everyone is encouraged to attend and learn!

Home nutrition support tailored to your needs

Feeding Tube Awareness Week Webinar

Save the date: February 7, 2023 | 1:00–2:00 p.m. EST Managing Tube Feeding at School and Work Sponsored by

Mini-Meeting

Listen to Your Gut and the Experts: HPEN Advice and Updates February 28, 2023 | 11:00 a.m.–2:30 pm EST Agenda coming soon!

Sponsored by

Did you miss the HPN Awareness Week webinar?

Watch and listen to “Collaborating with Your Care Team to Successfully Reduce or Wean TPN,” featuring gastroenterologist Dr. Carolyn Newberry, dietitian Jessica Younkman, and consumer Alan Segal.

Find it on oley.org/webinars.

Oley 2023 Annual Conference

Be on the lookout for conference dates and location!

Our plan is to offer an on-site, in-person conference, as well as continue to offer virtual, online options for our members who cannot attend in person.

Watch oley.org for updates on next year’s annual conference, as well as news about upcoming webinars and mini-meetings.

Volume XLIII, No. 4

• Nutrition, nursing and pharmacy expertise • Support for you and your caregivers • Optum Intestinal Rehab program at home Our award-winning nutrition team is here for you.

Visit infusion.optum.com Email hpninfo@optum.com

© 2022 Optum, Inc. All rights reserved. OPT7785945_221025

(518) 262-5079 • LifelineLetter — 5

Community News ASPEN 2022, cont. from pg. 1

Avery’s Hope: Rare Pediatric GI Lodging Assistance Program NORD’s Rare Pediatric GI Lodging Assistance Program, which opened thanks to a donation from Avery’s Hope, seeks to lessen the financial burden for the rare pediatric GI patient community by providing up to $1,000 in lodging assistance to enable rare GI–specific consults, care, and treatment.

To be eligible, you must have a confirmed rare GI diagnosis in a pediatric-aged individual; be a US citizen or resident of six months or greater; and meet the program’s financial eligibility criteria. Verification of a confirmed rare GI diagnosis and of a scheduled rare disease–specific consult/appointment are also required. Patients (or their parent/guardian) may be referred to the program by their healthcare provider or their case managers, or they may self-refer. A NORD representative will guide the parent/guardian through the application process.

Awards are offered to eligible individuals on a first come, first served basis, and are subject to funding availability.

For more details, visit the NORD website at rarediseases. org/for-patients-and-families/help-access-medications/ patient-assistance-programs-2 or contact NORD T&L Assistance Program at (203) 896-7261 or rarepedgi-travel@ rarediseases.org.

transplantation, innovative devices, and pharmacologic strategies for weaning from HPN. The symposium also covered living with HPN, clinician education, access to care, availability of specialists, and a summary discussion of what’s next in the management of HPN. The book signing and center stage presentation allowed clinicians attending the conference to interact with HPN consumers in a casual setting, away from doctor’s offices or hospitals. These contest winners were our stars! The exhibit booth buzzed as people stopped by to meet these talented HPN consumers. Oley gave away over 150 signed copies of the 4EverBold comic strip book, featuring comic strips by and short biographies of the eleven contest winners. (If you’d like a copy of the book or notecards with the winning comic strips, contact the Oley office!).

During the center stage presentation, the three contest winners in attendance, Janie, Olivia, and Trinity, answered questions about their comic strips, life on HPN, and self-advocacy. We are grateful for these three young women, their contribution, and the great impression they left on so many other attendees.

Near the end of the conference, before all 2000+ virtual and in-person conference attendees, Bettemarie Bond was presented with the nutrition support consumer advocacy award named in honor of Oley co-founder Dr. Lyn Howard. Bettemarie, who was receiving the award for the second time, serves as a consumer voice on the ASPEN Public Policy Committee. In addition, she is very active with Oley advocacy efforts and is in frequent communication with her elected state representatives. She pays close attention to the needs of the home nutrition support community and looks for ways to get those needs met. Our congratulations, and our thanks, to Bettemarie.

Needed: Your Email Address If Oley doesn’t have your email address, you’re missing conference news, event invitations, HPEN FDA Alerts, and other timely updates.

Remedy this today: email harrinc@amc.edu.

Special Pullout Resource for Those on Tube Feeding, to help answer questions and prepare you for possible changes in your supplies. The more you know, the better equipped you will be. Questions or comments? Contact us at oleyfoundation@gmail.com.

6 — LifelineLetter • (518) 262-5079

September/October 2022

FEEDING TUBES AND SUPPLIES ARE CHANGING

What Consumers & Caregivers Need to Know UNDERSTAND THE CHANGE "Connectors" are used on all types of medical tubing. A new connector, with the tradename ENFit®, has been introduced for use in the tube feeding (enteral nutrition) system—as part of the feeding tube itself, and as the connector on extension sets, syringes, feeding bags, and different accessories. ENFit is a dedicated connector that is not used in other medical applications. The change is in the piece that connects one part of the feeding (enteral) system to another.

KNOW WHAT YOU HAVE There are now primarily two styles of longer G-tubes, J-tubes, and G/J tubes: those with a funnel (legacy) feeding port and those with an ENFit feeding port. The port is part of the feeding tube itself, so these are called “legacy feeding tubes” and “ENFit feeding tubes.” Sometimes the longer tubes are called “dangler” tubes.

Types of low-profile devices

Legacy “dangler”

ENFit “dangler”

Below: With right-angle extension sets, the change is in the end that connects to the bag or syringe.

Low-profile (skin-level) feeding tubes are themselves neither legacy nor ENFit. It is the low-profile extension set (right-angle or bolus) that determines if you have a legacy or ENFit connection.

1

TRANSITION CONNECTORS Transition connectors have been created to ease the transition from legacy to ENFit. These transition, or “stepped,” connectors have been present on the end of pump and gravity feeding bags for several years now, in order to make the bags, which are already ENFit compatible, work with legacy feeding tubes. In the summer of 2022, several manufacturers stopped automatically attaching the transition connectors to the feeding bag.

In order to connect a legacy tube or extension set to an ENFit feeding bag or an ENFit syringe, you will need a transition connector. These are available as stand-alone items. You can discuss the option of having an ENFit feeding tube placed during your next in-person appointment with your healthcare provider.

Top photo: Feeding bags, with transition connector (left) and without transition connector (right). Bottom photo: Transition connectors.

MAKE SURE YOU RECEIVE SUPPLIES COMPATIBLE WITH YOUR FEEDING TUBE • Confirm that any tube feeding supplies ordered for you will connect to your feeding tube port, including the type of extension sets you will receive for low-profile tubes and the medication and feeding syringes, drainage bags, extension adaptors, and Y port adaptors—anything that has to connect to your tube for feeding, flushing, or draining.

• Confirm with your homecare company or DME (the company that provides your supplies) which type of feeding tube you have—legacy or ENFit—as determined by the type of feeding tube port.

• Take pictures of your feeding tube port and share with your homecare company so they can identify the compatible and appropriate supply needs you have.

• Confirm or obtain the part number for your feeding tube. It will help identify whether it is legacy or ENFit. Also, ask a dietitian or someone in the GI lab or interventional radiology (IR) department at your local hospital what type of supplies are available in the hospital, including in the emergency department. If needed, you can have backup adaptors and supplies ready to go in case of an urgent hospital visit.

WHAT TO DO ABOUT INCOMPATIBLE SUPPLIES What do you do when one part of your feeding tube system does not connect to another part?

• Use your emergency backup hospital supply, which you know is compatible with your tube, until compatible supplies are delivered. (See page 3.)

• Use the transition connectors or adaptors you have been saving as needed until you have the compatible supplies for your tube.

2

Various adaptors for connecting legacy tubes with ENFit supplies and ENFit tubes with legacy supplies

Tips & Tricks for Success with ENFit Medical Update

WHEN GETTING A NEW ENFIT TUBE PLACED • If the tube is placed while you are inpatient, ask to keep supplies that are used with your tube (i.e., feeding, flushing, and medication syringes).

• Any adaptors or syringes used with your feeding tube to feed, flush, and drain while you are in the hospital should be taken home with you. These may allow you to use up legacy supplies that you have at home with your new ENFit feeding tube, and may also serve as an emergency backup supply.

CLEANING AN ENFIT CONNECTOR • See the Global Enteral Device Supplier Association (GEDSA) resource on cleaning ENFit connectors at stayconnected.org/ENFit-cleaning-procedures-alltubes.

Legacy syringe to ENFit tube adaptors

• While in the hospital, ask how to draw up medications. Bring home any supplies used to do this.

• While in the hospital, ask how to clean the new connector. Bring home any supplies used to do this.

• Do not overtighten the ENFit connector. It usually needs just a quarter-turn to be secure. If you overtighten the syringe or extension set when you are attaching them to the feeding tube and they become stuck together, the connector on the feeding tube may crack and the feeding tube may need to be replaced.

• Check your tube connector and clean any residue before connecting.

• Avoid getting formula or medication in the threads or moat of the ENFit syringe tip or feeding tube.

Here are some tips on how to do this: • When priming a gravity or pump feeding bag, leave a little gap of unprimed tubing so the formula doesn’t drip into the moat of the ENFit connector. Wipe off any excess residue with gauze or tissue.

• Keeping the connectors clean and dry will also help prevent the connections from becoming stuck together.

• See also the additional tips on medication administration on page 4.

moat

3

MEDICATION ADMINISTRATION WITH ENFIT SYRINGE • See the GEDSA resource on medication administration at stayconnected.org/infographic-homeuse-02_03_17.

• When drawing up medication from a medicine bottle, use an ENFit medicine bottle adaptor or a medication straw. Adaptors and medication straws should be available from the pharmacy that dispenses the medication and ENFit medication syringe.

• If bottle adaptors or medication straws are not available, a transition connector or a fill cap coupler can be used to draw up medication into an ENFit syringe. Draw up the medication into the syringe, check that the correct dose is indicated on the syringe, remove the transition connector, and administer the medication into the ENFit feeding tube. If using this method to fill the ENFit syringe for a dose to be administered into a legacy feeding tube, simply leave the transition connector in place.

• Avoid submerging the ENFit syringe tip directly into medications. If this is unavoidable, tap excess medication out of the moat of the syringe after filling the syringe.

• To administer crushed pills:

ENFit medication bottle adaptors

• Dissolve crushed pills well in a cup with a convenient amount of water and then draw up into an ENFit syringe.

• It may be difficult to draw up tiny pieces of a crushed pill into an ENFit syringe (especially low-dose-tip ENFit syringes). For pills that do not dissolve well, use a heavy-duty pill crusher.

• If difficulty with crushing or administering certain pills continues, talk to your provider about options for obtaining the medication already diluted by the pharmacy.

• Note: Not all medications can be safely crushed. See the list called Oral Dosage Forms That Should Not Be Crushed on the Institute for Safe Medication Practices’ website (ismp.org/recommendations/do-not-crush). Check with a pharmacist when in doubt.

Fill cap coupler (left) and transition connector (right) being used to withdraw medications into ENFit syringes from bottles that have legacy bottle adaptors.

Left to right: standard ENFit tip syringe; ENFit low-dose-tip syringe; Luer lock (IV) syringe.

VENTING AND DRAINING • The experience of venting and draining a G-tube varies from person to person. Some people have more success with a “dangler” tube than with a low-profile device for this purpose. The smaller the French size and inner diameter of the tube, the more difficult the drainage may be, regardless of connector type.

• If you find you vent or drain better through a legacy tube, talk to your provider about maintaining a legacy tube and supplies. If you find it difficult to obtain legacy supplies, talk to your homecare company about obtaining transition connectors to connect ENFit supplies to Left port: Legacy your legacy tube. drainage port • Venting and drainage bags with ENFit connections are available. Ask your healthcare team Right port: ENFit medication port how to obtain these.

• Extension sets that have an ENFit medication port and a legacy drainage port are available for low-profile G-tubes. These are often referred to as “hybrid feed sets.”

CONTENT REVIEWED BY: Manpreet Mundi, MD, Oley Foundation Science and Medicine Advisor; Amy Braglia-Tarpey, MS, RD, CNSC, Oley Foundation Director of Education and Initiatives; Jennifer Bonvechio, PharmD, BCPPS; Ben Davis, medical device engineer and GEDSA Executive Director; Barbara Fleming, MS, APN Clinical Nurse Specialist, member GEDSA Clinical Advisory Board; Beth Lyman, RN, Co-chair GEDSA Clinical Advisory Board; Cynthia Reddick, RD, CNSC, member GEDSA Clinical Advisory Board, member Oley New Connectors Working Group; Elizabeth Vondriska, Applied Medical Technology, Inc. Our thanks to the Oley Foundation members who allowed us to use their photos.

4

Some images generously provided by GEDSA. Some images generously provided by Applied Medical Technology, Inc. (AMT).

This is not intended to provide medical advice or to recommend a course of treatment. All suggestions should be discussed with your healthcare provider prior to actual use.

11/09/2022

Oley News

Welcome New Oley Ambassadors

Would you like to speak with someone who has “been there, done that”? Call an Oley Ambassador. For a complete list of Ambassadors, visit oley.org or call (518) 262-5079.

Note: Ambassadors volunteer to provide peer support for HPEN patients and family members. They are not medical professionals and do not offer medical advice. Please do not contact Oley Ambassadors for solicitation, marketing, or research purposes. Meet our newest Oley Ambassadors, Luccas and Kelly.

Luccas Borges Luccas feels incredibly fortunate to be alive after a skiing accident in December 2020 left him near death. Due to a ruptured SMA, he lost all but six inches of his small intestine. He survived after his heart stopped for ten minutes, and he received over 130 units of blood. Luccas was in a coma for a week and had a spinal fusion for a fracture at L2. He has since relied on daily home parenteral nutrition (HPN). Luccas has managed multiple complications relating to drains and central lines (infections, etc.).

He is currently listed for small bowel transplant and is avidly learning about treatment options and paths for those with short bowel syndrome.

Luccas was born in Brazil but grew up moving around, from California to Florida to Chicago. He loves soccer, traveling, cooking, and things that move—he is an enthusiast of driving, cars, and planes. He has worked in strategy consulting, finance, and real estate investing roles. He was the valedictorian of Lincoln Park High School in Chicago, Illinois, in 2016, and graduated in Luccas Borges three years with advanced standing with a BA in Economics from Harvard, magna cum laude. He pursued his MBA at the University of Chicago Booth School of Business. Lucas lives in Chicago, Illinois, and can be reached at (813) 215-0088 or Lb2k10@gmail.com.

Kelly Baker An Arkansas native, Kelly Baker is a college student, a disability/rare disease advocate, and a public speaker. Kelly has chronic intestinal pseudo-obstruction (CIPO), as well as Ehlers-Danlos syndrome and autonomic neuropathy. She has been on home parenteral nutrition (HPN) for a total of three years and tube feeding for five years. She has had a GJ tube for over four years and a Broviac or Hickman central line for over two years. She also has past experience with NJ tubes, NG tubes, and PICC lines. Kelly has been independent in her medical care since age 13, and has experience setting up HPN and doing sterile dressing changes independently.

Kelly is currently a college student at Arkansas State Kelly Baker University—Mountain Home studying to be a nurse. She hopes to be a clinical educator in the future to help patients being put on enteral and parenteral nutrition. In her free time, Kelly enjoys crocheting, kayaking, gardening, and spending time with her cats. You can contact her via phone at (870) 736-0640, email kellysgotguts@gmail.com, or Instagram @kellysgotguts.

Nutrition Support that puts patients first Explore the many benefits of Restore+ Compassionate team of clinicians • Robust patient education • Prompt response to patient needs 24/7/365 • Easy ordering and reliable delivery of supplies • Therapy support while traveling and access to 1001+ nationwide pharmacies • Support groups • Recipes • and so much more...

For more information, call 866.827.8203 or visit optioncarehealth.com Reference: 1. Data on file, Option Care Health.

Option Care Health locations are ACHC accredited.

HHA numbers are available to view at optioncarehealth.com. ©2021 Option Care Health, Inc. All rights reserved. 21OCH07055

Volume XLIII, No. 4

(518) 262-5079 • LifelineLetter — 11

Consumer Profile Redeeming Power, cont. from pg. 1

The Museum of Modern Art describes a found object as “an object—often utilitarian, manufactured, or naturally occurring— that was not originally designed for an artistic purpose, but has been repurposed in an artistic context.”

I started out using mostly natural My art has given me a new sense elements such as feathers, rocks, of identity as an artist and cre- mosses, lichens, shells, and berries.

But I was soon drawn to using small ative person, a person who can knickknacks, tools, cigar boxes, and manipulate and transform things other items.

My mother had been driving at the time of the accident and she said seeing me on the intravenous, or parenteral, nutrition (PN) made her feel too guilty, so I felt alienated from my family.

Daring to Create I struggled to take over my own care and the care of my children and to be able to walk and drive again. I also tried to look for new hobbies and new ways around her.

New Value in Old Things of filling my free time. I decided to take I have discovered that making found a watercolor class at an adult learning center. I’d always been told in school that I was terrible at art, and my object sculptures speaks to me both artistically and emotionally. I D and F grades in art had confirmed that assessment. My teachers have come to see it as a spiritual and philosophical act of redeeming had suggested I stick with my strengths, math and writing. Now, due the discarded or rejected. Most of the materials that I use are picked to a closed head injury, I was still unable to do math or accounting, up at yard sales or secondhand stores. They are things that someone and I couldn’t remember words or used the wrong ones. I wanted else had thought valueless. I believe that by repurposing them as to try something new. I had always loved looking at art. Now was art, I am giving them value and purpose. I feel that redeeming the discarded and rejected the time to be daring parts that are used in and try doing it. the art is a metaphor I found that I loved for redeeming the painting, and I was discarded or rejected eventually able to sell parts of myself. My a few watercolors. I art becomes an act started to experiment of redeeming the with using different seemingly unrematerials to paint. I deemable, giv ing had been on a liquid worth to that which medication that I no has been deemed longer needed, so I did unworthy. The word a series of “watercolor” deem comes from paintings using some roots meaning “act as of it. I loved the effect Cowboy boots Mica has painted judge.” By redeeming it had in the paintings.

I found that I could paint with iris flowers by squeezing them as I objects, I am making a new judgment as to their, and my, value.

My art has given me a new sense of identity as an artist and creative drew and using the liquid that came out. I started using rice paper person, a person who can and other collage materials in manipulate and transform my art. I am named after the I have discovered that making found things around her. It has mineral mica, and I would often also led me to new friends put a thin piece of mica next to object sculptures speaks to me both who value art and creativity my signature.

I started to work with other artistically and emotionally. I have come to and are themselves artistic and creative. Creativity has materials and other types of see it as a spiritual and philosophical act of given me the courage to try art. I started sewing material new things. I have started onto shirts, creating unique redeeming the discarded or rejected. exploring spirituality and collages (see photo pg. 1). I have become a spiritual began painting cowboy boots. director.

I have written and published a book about my search for But most of all, I loved doing mixed media pieces. I started to collage meaning.

I have started leading workshops and retreats focused on things other than paper or fabric. I would collage items onto on art and spirituality.

I have begun to speak in public. These are picture frames or glue pictures and items such as seeds, buttons, all things that I would have been afraid to do before the accident. or wood into mint tins. I enlarged on the idea of mixed media and One thing that has increasingly bothered me about being on began doing sculptures using found objects.

12 — LifelineLetter • (518) 262-5079

September/October 2022

Consumer Profile and hot glue—the paint in the tubing home PN is the amount of waste This felt like making lemonade out of for the dreads, and the ink for my generated by the discards from the supplies used for my medical lemons. I am creating things of mean- signature.

I think of this piece as a joining procedures. I started to think that ing and beauty out of what has often of our hyper-abilities—my artwork using the discarded waste from my and his appreciation of it through medical supplies to make artwork felt like a burden. touch. It is a collaborative piece; would combine my philosophy and practice of found object art with my concerns about the environment my creation of it can only be completed by his feeling of it. The and the ways that I contribute to landfills through my medical success of this first piece has inspired me to construct other artwork out of my medical procedure discards. Using these helps me find procedures and life-support dependancy. a higher purpose in having to do the procedures that can become As a result of this, I started so monotonous. Now, I feel challenged to look at the medical on a mixed media piece materials and discards in a new way. I look for connections and that is a self-portrait ideas of how I could use them. This felt like making lemonade out composed of the medical of lemons. I am creating things of meaning and beauty out of what discards. has often felt like a burden.

Not long ago, I gave a I first felt that my accident and dependence on home PN meant small mixed media found only loss. Now I feel that I have gained so much. object piece to a blind friend, and he talked Here are the supplies used in the portrait of my friend: about the value in the experience of being able Beanie: Rubber tips from syringe plungers to feel the art. I have been Dreads: Spiral IV tubing thinking about a couple Dread ends: Catheter and syringe caps of things in relation to Face, nose, neck, torso: IV vitamin vials that. First, how a person Sunglasses: IV tubing filters and piece from peripheral IV kit who is “sight deficient” Mustache and beard: Rubber from clamps used to separate IV fluids may experience art more Lips: Tips from povidone iodine swabsticks deeply through touch Portrait of Mica's friend, made than sighted individuals of medical discards do through sight.

Secondly, I was thinking that my “disability” led me to express myself through art—particularly to wanting to use the discards as a form of expression; that a “disability” led to a hyper-ability, just as blindness can lead to hyper-hearing or hyper-smell.

My friend’s “disability” led to his hyper-touch. My “disability” led to my hyper-ability of artistic expression. It wasn’t until after my injuries and the I feel that redeeming the permanent effect of them on my life had discarded and rejected settled in that I was parts that are used in called to express myself the art is a metaphor for as an artist.

Putting all this toredeeming the discarded gether, I was inspired or rejected parts of myself. to do a mixed media My art becomes an act of portrait of my friend out of medical discards (see redeeming the seemingly above). The only things used in this piece that unredeemable, giving not discards from worth to that which has are medical procedures are been deemed unworthy. the board it is on, the adhesives—Gorilla glue

Volume XLIII, No. 4

Mica Coffin is a spiritual director, minister, artist, and the author of Light for the Journey.

(518) 262-5079 • LifelineLetter — 13

Oley News

American Gastroenterological Association Publishes Important Clinical Practice Update In the October issue of Clinical Gastroenterology and Hepatology, key opinion leaders Kishore Iyer, John Dibaise, and Alberto Rubio-Tapia set forth clinical guidance for nine best practice areas in the care of adults with short bowel syndrome and intestinal failure (SBS-IF). Aimed at gastroenterologists and other clinicians managing SBS-IF patients, “AGA Clinical Practice Update on Management of Short Bowel Syndrome: Expert Review” may also be of use to patients and caregivers in better understanding the disease state and interventions.

One important takeaway and paradigm shift is the recommendation that those with SBS should not focus on severe dietary restrictions but rather a 50 percent increase in oral/enteral nutrition intake above estimated needs (hyperphagic). The experts suggest that dietary adjustments should be made by a registered dietitian, based on tolerance as evidenced by symptoms, stool output, and weight changes.

Surgical options are addressed and prioritize restoration of the bowel in continuity as soon as safely possible.

The other guidelines address bowel anatomy and its documentation in the medical record; nutrition assessment; parenteral nutrition; oral rehydration solution; pharmacologic therapy; drug dosing; glucagon-likepeptide-2 (GLP-2) prevention of complications; referral for intestinal transplant; and education and support for patients and caregivers.

Reference: Iyer K, Dibaise J, Rubio-Tapia A. AGA clinical practice update on management of Short Bowel Syndrome: Expert review. Clin Gastroenterol Hepatol. 2022;20(10):218594.

Need a Restroom Urgently?

Thank You Corporate Partners!

Please join Oley in thanking the companies that provide unrestricted grants to support the foundation year round.

Learn about our most recent corporate contributors in their own words below. For a complete list of corporate partners, go to oley.org/PartnerShowcase.

9 Meters Biopharma

9 Meters Biopharma, Inc., is a clinical-stage company pioneering novel treatments for people with rare digestive diseases, GI conditions with unmet needs, and debilitating disorders in which the biology of the gut is a contributing factor. 9 Meters is developing vurolenatide, a proprietary long-acting GLP-1 agonist for SBS which is currently in Phase 3 development.

Coram

CVS Specialty and Coram provide personalized, compassionate, high-quality infusion care to patients where they live, work, or travel. With more than thirty years of experience and nearly 1,200 skilled clinicians, Coram/CVS Specialty Infusion Services leads with commitment from the heart. The company maintains a 96 percent patient satisfaction rating.

Nestlé Health Science

Nestlé Health Science empowers patients and consumers in the U.S. to thrive throughout their health and wellness journeys by offering an extensive portfolio of active lifestyle nutrition, medical nutrition, and pharmaceutical therapies.

Moog

Infinity enteral feeding pumps by Moog are 100 percent mobile, providing patients of all ages the ability to live life more fully. The company’s industry-leading clinical and customer support teams are available to assist customers and patients twenty-four hours a day, seven days per week.

Many Oley Foundation members have experienced the need to get to a toilet immediately. This can be uncomfortable when you are at a store that doesn’t have a public restroom.

Showing an employee the Oley Bathroom Access Card can make it easier to ask permission to use the restroom. The card reads: “I have a digestive disorder that means sometimes I need the bathroom urgently. Please allow me to use your facilities.” Order your FREE card at oley.org or by calling (518) 262-5079.

14 — LifelineLetter • (518) 262-5079

September/October 2022

Contributor News Donor News

Notable Individual Gifts

Among the contributions we receive, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. We are grateful for the following gifts received from August 2 to October 14, 2022.

Memorials: In memory of Jim and Judi Ervin; Natalie Ginsburg; Margaret “Peg” Manrodt; Carole Ryan; Michael E. Sexton Tributes: In honor of Joan Bishop and her 75th birthday, “with heartfelt appreciation of her many years of extraordinary service to the Oley Foundation and wonderful friendship”; Bettemarie Bond and family; Todd Friedman and family; Aidan Koncius; Michael Medwar and family; Jeff Nemeth Fundraisers: AmazonSmile (online shopping) Thank you for all gifts and the kind comments we receive throughout the year. Your support overwhelms us and continues to be a source of inspiration.

Oley Horizon Society

Many thanks to those who have arranged a planned gift to ensure continuing support for HPEN consumers and their families. Learn how you can make a difference by calling (518) 262-5079 or visiting oley.org/plannedgifts.

Felice Austin Jane Balint, MD John Balint, MD Joan Bishop Ginger Bolinger Pat Brown, RN, CNSN Faye Clements, RN, BS Katherine Cotter Jim Cowan Rick Davis Ann & Paul DeBarbieri David & Sheila DeKold Dale & Martha Delano Tom Diamantidis, PharmD Gail Egan, MS, ANP Selma Ehrenpreis Herb & Joy Emich Jerry Fickle Don Freeman Linda Gold Linda Gravenstein Deborah Groeber The Groeber Family

Valerie Gyurko, RN Alfred Haas Shirley Heller Alicia Hoelle Jeff & Rose Hoelle Lyn Howard, MD William Hoyt Portia & Wallace Hutton Kishore Iyer, MD Doris R. Johnson Darlene Kelly, MD, PhD Family of Shirley Klein Jim Lacy, RN, BSN, CRNI Robin Lang Joyce Madden Hubert Maiden Laura Matarese, PhD, RD, LDN, CNSC, FADA, FASPEN Kathleen McInnes Michael Medwar Meredith Nelson Nancy Nicholson Rodney Okamoto, RPh,

& Paula Okamoto Kay Oldenburg Harold & Rose Orland Judy Peterson, MS, RN Clemens Pietzner Beverly Promisel Abraham Rich Wendy B. Rivner Roslyn & Eric Scheib Dahl Susan & Jeffrey Schesnol Doug Seidner, MD, FACG, CNSP Judi Smith Steve Swensen Cheryl Thompson, PhD, RD, CNSC, & Gregory A. Thompson, MD, MSc Cathy Tokarz Eleanor & Walter Wilson Marion & Larry Winkler James Wittmann Patty & Darrell Woods Rosaline Ann & William Wu

Volume XLIII, No. 4

Oley Corporate Partners

The following companies provide over one-half of the funds needed to support Oley programs. Corporate relationships also strengthen our education and outreach efforts. We are grateful for their strong commitment.

TITANIUM LEVEL PARTNER ($150,000+) Takeda Pharmaceutical GOLD MEDALLION PARTNER ($50,000–$69,999) 9 Meters Biopharma SILVER CIRCLE PARTNERS ($30,000–$49,999) Coram / CVS specialty infusion services Zealand Pharma BRONZE STAR PARTNERS ($20,000–$29,999) Abbott Baxter International Inc. Cardinal Health, Inc. Fresenius Kabi USA Kate Farms Med-IQ Option Care Health Optum Infusion Pharmacy VectivBio BENEFACTOR LEVEL PARTNERS ($10,000–$19,999) Avanos Nestlé Health Science PATRON LEVEL PARTNERS ($5,000–$9,999) Amerita, Inc. B. Braun Medical Inc. MOOG Medical Nutrishare, Inc. Real Food Blends Soleo Health

(518) 262-5079 • LifelineLetter — 15

LifelineLetter

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The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054

Want a paper copy of the newsletter?

Contact us at (518) 262-5600 or oleyfoundation@gmail.

Conserving Resources, Without Sacrificing Services

ANNOUNCEMENT: We are making changes to the LifelineLetter. As printing costs continue to go up, we’ve been considering how we can conserve Oley Foundation resources while still meeting our members’ needs. This has led to the following changes.

1. Printed LifelineLetter newsletter by request only. Do you want to continue getting a paper copy of the LifelineLetter? Do you have limited access to or find the internet hard to use? Do you share your paper copy with your healthcare provider or others, or carry it with you to read in a waiting room? If so, act now!

If you need, want, and use a paper copy of the newsletter for whatever reason, contact us at (518) 262-5600 or oleyfoundation@gmail.com. Leave a message or email us the following: Your name and address as they appear on the mailing label of the newsletter; your phone number, in case we have questions; any corrections to your name and address as they appear on the mailing label.

If we don’t hear from you, and we have an email address for you on file, we will add you to the list of Oley members who get an email with a link when a new issue of the newsletter is available on our website. No action = no printed copy of the newsletter.

2. Enhance the digital experience. We will make the online version of the newsletter easier to read, download, and share, with keyword searches and active links.

The new digital version of the newsletter will be unveiled soon on oley.org. Watch your email for an announcement!

Want a paper copy of the newsletter?

Contact us at (518) 262-5600 or oleyfoundation@gmail.

3. Go quarterly. Moving to a quarterly newsletter while increasing our engagement with members through other channels, including social media, will allow us to conserve resources while also being more timely in sharing news and announcements.

You should notice changes soon, primarily in email and on social media.

For those without internet access: We don’t want to lose you! Remember to reach out today to keep getting the LifelineLetter delivered by US mail. Also, the Oley office and Oley Ambassadors are always just a phone call away whenever you need information or support.

Feedback? Ideas? Email the editor at metzgel@amc.edu or call (518) 262-5079.