Although the medical/technical information at this website is reviewed by the Foundation’s Medical & Research Director, 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.
“I am the only TPN/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…”
“My doctor wants me to be evaluated for a small bowel / liver transplant…”
These are some of the most frequently asked questions 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 caring for patients with intestinal failure.”
“My tube is clogged.”
“How often should I flush my g-tube?”
“I’m spiking a fever when I infuse my TPN”
Advice on how to handle these and other common complications of tube and IV feeding are covered in the Oley Foundation’s HEN (tube) and HPN (IV) Complication Charts.
Guidelines outlining the “best practices” in managing home nutrition support patients are in development for patients and/or their physicians. Guidelines will likely be ready in winter 2007.
“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.
The World Health Organization formula can be made at home or is available in prepackaged form from Jianas Brother Packaging Co. (2533 Southwest Blvd., Kansas City, MO 64108; 816-421-2880). CeraLyte is available either on their website, www.ceraproductsinc.com or by contacting the company (9017 Mendenhall Court, Columbia, MD 21045;888-ceralyte). Indicate that you are an Oley member to receive a 15% discount. Pedialyte is available in most retail pharmacies and some grocery stores.
Understanding 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.
Healthopedia.com website offers images of the human digestive system and certain conditions that afflict it.