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FAQs: About Oley

1. Where did the Foundation get its name?

‘Oley’ is the nickname of Clarence Oldenburg, who co-founded the Oley Foundation in 1983 with his physician, Lyn Howard, MD. Clarence was on HPN for 18 years after a blood clot cut off circulation to his intestines. He and Dr. Howard created the Foundation as a way of sharing information and support with homePEN consumers across the country, and around the world. Clarence died in 1998. Dr. Howard is the Foundation’s Medical and Research Advisor.


2. Does the Oley Foundation provide financial support to families in need?

The Oley Foundation is sympathetic to the financial strain homePEN puts on patients and their families. All programs are offered FREE of charge to patients and their families; however, the Foundation is not able to offer financial support. A limited amount of free equipment and supplies are available through the Foundation’s Equipment Exchange program. In addition, a small number of travel grants are often available to offset members’ travel expenses to the Oley Foundation’s annual consumer/clinician conference. 

 

3. Does the Oley Foundation have a speaker’s bureau?

Yes. Experienced patients and caregivers are available to speak about their experiences with tube teedingand/or IV nutrition from a personal perspective, as well as about Oley Foundation programs, at your conference, sales meeting or gathering. The Foundation board has representatives from leading nutrition support programs from around the country, who are able to speak on clinical topics and about Oley’s services for patients and clinicians.

 

4. How do I contact my elected officials?

Click here for more information.

FAQs: HEN

1. What does EN mean?

Sometimes a person cannot receive enough nutrients from the food they eat because of a severe gastrointestinal (GI) disorder that impairs their ability to swallow food, move food along the GI tract or absorb nutrients from the food. In such cases, enteral (EN) nutrition support may be necessary. Enteral nutrition is in the form of a liquid, however, note that enteral solutions are very different from parenteral solutions and are in no way interchangeable.

 

Enteral (EN-tur-uhl) nutrition, or EN, is used when the gut is still partially working, but you cannot eat or absorb enough nutrients. EN is delivered directly into the stomach (gastric = stomach) through a gastrostomy tube (G-tube) or nasogastric tube (NG-tube) or directly into the intestine (jejunum = part of the intestine) through a jejunostomy tube (J-tube). G- and J-tubes enter into the stomach or intestine through a surgically formed opening, called a stoma. An NG-tube goes through the nose and down the esophagus into the stomach. Most people use special formulas for tube feeding, though some people create their own formulas/recipes with food and a blender. We sometimes use the term tube feeding to denote enteral nutrition. 

 

2. What do you mean by HEN/HomeEN?

Although EN is often given in the hospital, many people continue the therapy at home, thus the term “homeEN.” Usually this infusion takes place at night so that during the day the person can be free of tubes and pumps and is able to maintain a normal life. While some are on homeEN indefinitely, others only need several months of nutritional rehabilitation and thereafter can maintain themselves by ordinary food. Medical problems and diagnoses that can lead to dependence upon home-infused nutrition therapy are highly varied and include: 

 

• Cancer forms that limit nutrient absorption or impair the ability to eat
• Radiation Enteritis
• Crohn’s disease
• Pseudo-obstruction
and other Motility Disorders (gastroparesis, gastrectomy)
• Congenital bowel disease
• Ischemic bowel disease
Intestinal tract injuries or traumas that impair the ability to eat
• AIDS
• Stroke
(Cerebral vascular accident)
• Chronic adhesive obstructions
• Cystic fibrosis
• Ulcerative colitis
• Mitochondrial Disease
• ALS/Lou Gehrig’s Disease
• Parkinson’s Disease

One reader asked about the acronyms used to describe enteral and parenteral nutrition. Following is a list of the acronyms found in Oley materials (and most professional journals). Please note: when possible, our policy is to try to be as accurate as possible, describing a consumer by the specific therapy they use; the widely encompassing “HomePEN” is used when 1. a consumer has not identified which therapy he/she uses, 2. a consumer uses both therapies, 3. an issue/article relates to users of either therapy.

EN = enteral nutrition
Nutrition, usually taken by tube (must go through at least part of the digestive tract) in a hospital, nursing home or patient’s home.

HEN, HomeEN = home enteral nutrition
Nutrition, usually taken by tube (must go through part of the digestive tract) in the patient’s home.

PN = parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in a hospital, nursing home or patient’s home. You may also see the older terms TPN (total parenteral nutrition) or HA (hyperalimentation) used.

HPN, HomePN = home parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in the patient’s home.

HomePEN = home parenteral OR enteral nutrition
Nutrition taken either by tube (must go through at least part of the digestive tract) or intravenously (bypassing the digestive tract) in the patient’s home.

 

3. Why do you use the term “consumers” instead of “patients” in the newsletter and discussions?

Oley members have told us that, once they have mastered the “ins and outs” of the therapy they receive they would rather not be considered patients. As health care consumers, they prefer the term “consumers” and, as time passes, they insist on becoming “partners” with their health care providers.

4. How can I tell others about HEN?

If you’ve ever struggled to tell a friend or loved one about HEN, DVDs and videos that can help explain tube feeding are available FREE of charge from the Oley DVD/Video Library.


Additionally, Oley’s Book Corner provides a listing (plus reviews) of books that can help explain tube feeding to others.

FAQs: HPN

1. What does PN mean?

Sometimes a person cannot receive enough nutrients from the food they eat or they cannot eat because of a severe gastrointestinal (GI) disorder that impairs their ability to swallow food, move food along the GI tract or absorb nutrients from the food. In such cases, parenteral (PN) nutrition support may be necessary. Parenteral nutrition is in the form of a liquid, however, note that the parenteral solutions are very different from enteral solutions and are in no way interchangeable.


Parenteral (pah-REN-tur-uhl) means “outside the intestine.” Parenteral nutrition, or PN, is used when the GI tract does not work. It is delivered directly into the bloodstream (bypassing the GI tract) through a central venous catheter (CVC), which is also sometimes referred to as a central line or a central vascular access device (CVAD). Patients who use this therapy are fed a specially formulated solution through their central lines. The solutions contain nutrients that are already broken down into very simple or elemental parts and can be used by all cells in the body. We sometimes use the terms intravenous feeding or IV nutrition to denote parenteral nutrition.

 

2. What do you mean by HPN/HomePN?

Although PN is often given in the hospital, many people continue the therapy at home, thus the term “homePN.” Usually this infusion takes place at night so that during the day the person can be free of tubes and pumps and is able to maintain a normal life. While some are on homePN indefinitely, others only need several months of nutritional rehabilitation and thereafter can maintain themselves by ordinary food. Medical problems and diagnoses that can lead to dependence upon home-infused nutrition therapy are highly varied and include:

  • Cancer forms that limit nutrient absorption or impair the ability to eat
  • Radiation Enteritis
  • Crohn’s disease
  • Pseudo-obstruction and other Motility Disorders (gastroparesis, gastrectomy)
  • Congenital bowel disease
  • Ischemic bowel disease
  • Intestinal tract injuries or traumas that impair the ability to eat
  • AIDS
  • Stroke (Cerebral vascular accident)
  • Chronic adhesive obstructions
  • Cystic fibrosis
  • Ulcerative colitis
  • Mitochondrial Disease
  • ALS/Lou Gehrig’s Disease
  • Parkinson’s Disease
One reader asked about the acronyms used to describe parenteral and enteral nutrition. Following is a list of the acronyms found in Oley materials (and most professional journals). Please note: when possible, our policy is to try to be as accurate as possible, describing a consumer by the specific therapy they use; the widely encompassing “HomePEN” is used when 1. a consumer has not identified which therapy he/she uses, 2. a consumer uses both therapies, 3. an issue/article relates to users of either therapy.

 

EN = enteral nutrition
Nutrition, usually taken by tube (must go through at least part of the digestive tract) in a hospital, nursing home or patient’s home.

HEN, HomeEN = home enteral nutrition
Nutrition, usually taken by tube (must go through part of the digestive tract) in the patient’s home.

PN = parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in a hospital, nursing home or patient’s home. You may also see the older terms TPN (total parenteral nutrition) or HA (hyperalimentation) used.

HPN, HomePN = home parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in the patient’s home.

HomePEN = home parenteral OR enteral nutrition
Nutrition taken either by tube (must go through at least part of the digestive tract) or intravenously (bypassing the digestive tract) in the patient’s home.

 

3. Why do you use the term “consumers” instead of “patients” in the newsletter and discussions?

 

Oley members have told us that, once they have mastered the “ins and outs” of the therapy they receive they would rather not be considered patients. As health care consumers, they prefer the term “consumers” and, as time passes, they insist on becoming “partners” with their health care providers.

 

4. What were the early days of HPN like?

Procedures, public opinion, finding information and support were all very different in the early days when parenteral nutrition was first created and patients started bringing into their homes. Here are some links to articles, videos and books that talk about those pioneering times.

 

5. How can I tell others about HPN?

If you’ve ever struggled with trying to tell a friend or loved one about HPN, the National Home Infusion Association website has some tips. Go to the “Frequently Asked Questions” section and find short answers to: “What is infusion therapy?”, “Who provides infusion therapy?” and “Does Medicare cover home infusion therapy?”


Additionally, Oley’s Book Corner provides a listing (plus reviews) of books that can help explain IV nutrition to others.

FAQs: Medical Concerns

Although the medical/technical information at this Web site is reviewed by homePEN clinicians, the following articles are provided as an open forum for the homePEN community and should not imply endorsement by the Oley Foundation. All issues, ideas, suggestions etc. should be discussed with your health care provider prior to actual use.


1. How can I find the best physician or team to manage my home tube feeding or IV nutrition?

The Oley Foundation cannot refer patients and families to specific physician or health care institutions. Research shows that nutrition support patient outcomes are better when they are managed by teams with the most experience – those who care for a large number of similar patients. Click here for a listing of the largest nutrition support centers in the US. Patients, who live too far away from these centers for regular care, may benefit by arranging a consult visit, through their local physician, on an annual or semi-annual basis. Another sign that your clinician has special training in nutrition support are the credentials following his or her name, like CNSC, which means they are a Certified Nutrition Support Clinician. Click here to read more about nutrition support certification.

 

2. What if I need a physician or nutrition/transplant program referral?

“I am the only PN/tube-fed patient my doctor cares for”, “I have questions my doctor cannot answer”, “I’d like a second opinion before undergoing a surgery/procedure”, and “My doctor wants me to be evaluated for a small bowel/liver transplant” are just some concerns that boil down in essence to needing a physician or nutrition/transplant program referral. The Oley Foundation cannot provide a referral but has generated a listing of centers specializing in care for patients with intestinal failure.

 

3. What are Living Wills/Healthcare Proxies?

Through the unfortunate series of events that have surrounded Terri Schiavo and others, the one undisputed fact is that a Living Will could have spared the family much of the controversy, court proceedings, expense and pain and anguish. This is very likely to become Terri’s legacy – a call to action regarding end of life discussions and the preparation of Living Wills/Healthcare Proxies..


The following information is provided to help you understand the process. First of all, it is important to understand what a Living Will is. The term Living Will may indicate that it is a Will, but in reality, it is more similar to a Power of Attorney. Not to be confused by the title, the purpose of a living will is to allow you to make the decisions about life support. The instructions outlined in “your” Living Will directs your physician or health care providers to follow your instructions.

 

Living Wills are necessary because advances in medicine have set the stage for the prolonging of life beyond what may be considered as reasonable quality of life. Some people would find this intervention desirable, while others would not. The Living Will allows you to make the decision of whether life-prolonging medical or surgical procedures are to be continued, or withheld or withdrawn and whether enteral and/or parenteral feedings are to be used or withheld. It allows you to express your wishes prior to being incapacitated. Each State outlines the proper form to be used and it must be executed in compliance with the laws of your State. For example one state may require two witnesses; another may require the form be signed in the presence of a Notary public. Your directive must be filed with your physician/healthcare team and should be discussed at length with your family. In fact some folks consider your discussions with your family more important than the document itself! We encourage Oley members to share the document and your wishes with close family and friends to ensure your wishes are well understood.

 

Your Living Will generally becomes operative when it is provided to your physician or health care provider AND you are incapable of making health care decisions for yourself, such as where you are permanently unconscious or terminally ill and unable to communicate.

 

For additional information about the specifics of your State we suggest exploring www.uslegalforms.com.


4. Are there any resources that provide advice for dealing with tube feeding/IV nutrition complications?

Advice on how to handle questions/concerns such as “My tube is clogged”, “How often should I flush my G-tube?” and “I’m spiking a fever when I infuse my PN” and other common complications of tube feeding and IV nutrition are covered in the Oley Foundation’s Tube Feeding Troubleshooting Guide and HPN Complication Charts.


5. I have short bowel syndrome (SBS) and need extra hydration or would like to reduce the amount of hydration I take by IV. What is an appropriate solution for me to take orally?

Patients with short bowel syndrome (SBS) lose more fluid from their bowels each day than they are drinking. Fluid losses should be replaced by drinking oral rehydration solutions. Such solutions were designed knowing that when the intestine absorbs salt, it absorbs sugar, and vice versa. When either salt or sugar is absorbed, water is absorbed as well. When the concentration of salt in a solution taken by mouth is too low (lower than the concentration in blood, for example), the intestine secretes salt in order to bring the concentration of the ingested solution up to that of blood. That results in the secretion of salt and water. Therefore, drinking water may be worse than drinking nothing at all, as it may worsen dehydration. Similarly drinking fluids with high sugar, but no salt, like soda and juice can actually make the patient more dehydrated. Ideally the amount of salt in the solution should be at least 90meg/liter. Solutions such as the World Health Organization rehydration solution, CeraLyte®, or Pedialyte® (with an extra teaspoon of salt added per liter) can be used.


Click here for more information on oral rehydration solutions, including recipes.


more Calendar

5/6/2017
Oley Regional Conference

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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