A publication of

elebrateFor Home TPN and Tube Feeding Patients

Life

Nov 2010 | Issue 22

Optimizing Oral & Enteral Feedings with Intestinal Failure

Just the Facts... Managing Chronic Pain

Getting the Most Out of Your New Diet

Medication Management of Chronic Intestinal Failure

The Beauty of Mules

The Importance of Living Wills

2 | Celebrate Life | Nov. 2010, Issue 22

8 Just the Facts… Managing Chronic Pain The treatment of chronic pain can be challenging for both the patient and the

physician. Learn what these challenges are and how pain can be managed.

12 Getting the Most Out of Your New Diet Recommendations Developing chronic intestinal failure (CIF) can mean many changes to your lifestyle,

including changes to your eating habits. Find out about suggested foods and nutritional supplements that can help you ease into your new diet.

14 Celebration of Life Circle Award Winners In honor of the 10 year anniversary of this award, we are recognizing three winners

who exemplify the spirit of living life to its fullest.

19 The Oley Foundation 25th Annual Conference This year was the 25th anniversary of The Oley Foundation’s Annual Consumer/

Clinician Conference, and is one of the largest consumer-focused programs that Coram sponsors. We are proud to be part of this conference and proud of our support for Oley throughout these past 25 years.

20 Industry Insights: Medication Management of CIF Learn about the different medications available for those with chronic intestinal

failure (CIF) that can help improve absorption and reduce CIF-related symptoms.

22 The Beauty of Mules Stubbornness is usually considered an undesirable personal quality. Read how one

long-term TPN consumer turned this quality into a valuable, life-sustaining asset.

26 FYI: The Importance of a Living Will A living will is extremely important if you are without the ability to make sound

decisions regarding your care. Find out why you should have one.

29 Small Steps to Big Steps – Informational Teleconference Series

30 Advocacy Corner

4 Optimizing Oral and Enteral Feedings with Intestinal Failure Chronic intestinal failure (CIF) has many possible causes. Many people with intestinal failure often

require parenteral and/or enteral nutrition to meet a majority their of nutritional needs.

Nov 2010 | Issue 22

Celebrate Life The Quarterly Magazine for Home TPN and Tube Feeding Patients

Celebrate Life StaffCarlota Bentley, Managing EditorKaren Hamilton, Clinical Editor Nancy Geiger Wooten, Graphic Design

Contributing WritersMark DeLegge, MDHeather Gifford, RD, CDN, CNSCLinda Gravenstein, Consumer AdvocateKaren Hamilton, MS, RD, CNSDKathleen JarmonRobbyn S. Kindle, RD

Celebrate Life is published quarterly and provided as a free service to parenteral and enteral consumers. Opinions expressed by contributing authors and sources are not necessarily those of the publisher. Information contained in this magazine is for educational purposes only and is not intended as a substitute for medical advice.

Do not use this information to diagnose or treat a health problem or disease without consulting a qualified physician. Please consult your physician before starting any course of treatment or supplementation, particularly if you are currently under medical care. Never disregard medical advice or delay in seeking it because of something you have read in this publication.

© 2010 Coram Specialty Infusion Services. All rights reserved. No part of this publication may be distributed, reprinted or photocopied without prior written permission of copyright owner. All service marks, trademarks and trade names presented or referred to in this magazine are the property of their respective owners.

We welcome your comments, stories and suggestions. Please send all correspondence to:

Coram Specialty Infusion ServicesCelebrate Life555 17th Street, Suite 1500Denver, CO 80202

Contents

COR09007-1010

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I am so excited to be the guest editor of this issue of Celebrate Life. The authors share many useful tips and educational items aimed at understanding and managing CIF with the goal to improve patient outcomes and control the related symptoms. I am honored to be part of this issue as education is an important part of my daily interactions with Home Parenteral and Enteral Nutrition (HPEN) consumers.

My role as a Coram dietitian provides such a unique opportunity in that I help monitor tolerance and progress of a consumer’s nutrition therapy, and also provide ongoing education and support that helps each consumer become independent with their specialized nutrition therapy. I help my consumers learn more about the role of nutrition on their particular disease process. CIF is a perfect example. A diagnosis of CIF may appear at first to indicate continuous nutrition support, ongoing diarrhea and pain. But with the right support and education, modifications can be made to an oral diet and to medications to help improve bowel adaptation and perhaps decreased dependence on home nutrition support.

As Linda Gravenstein, Coram Consumer Advocate, puts it, CIF should be termed “Functionally Challenged Intestine” vs. “Intestinal Failure” as there are indeed, options to help improve a “challenged” intestine. Be sure to read Linda’s article “I have been diagnosed with CIF, now what?” for tips on ways to mange the diagnosis of CIF, receive support and learn ways to adapt to new challenges.

For further inspiration, be sure to check out Robbyn Kindle’s article, “The Beauty of Mules.” Robbyn shares her experience with her diagnosis of CIF and how she never gave up. She is now 10 years post intestinal transplant! You will also read three uplifting stories by our “Celebration of Life Circle Award Winners” as both Brooklyne Williams and Kassandra DeLossantos share their story of living life to the fullest despite coping with very small amounts of small bowel. Maureen Bishop shares her story as a foster mom to a child awaiting an intestinal, liver and pancreas transplant. Each of these heroes provide inspiration and hope to those with intestinal “challenges.”

I have included several articles on ways you, as the consumer, can help overcome intestinal “challenges”. You will learn suggested food guidelines in my “Optimizing Oral and Enteral Feedings with Intestinal Failure” article, and food tips in “Getting the Most Out of Your New Diet Recommendations: Suggested Food and Nutritional Supplement Tips” by Dr. Lillian Harvey-Banchik. You will learn about medication options in the role of CIF in an article I co-authored with Dr. Mark DeLegge titled “Medication Management of Chronic Intestinal Failure.” Dr. DeLegge also wrote an article titled “Managing Chronic Pain.” A must read for all!

We have also included a great article called “The Importance of a Living Will.” It is important that we all have our wishes written down should a time come where we are unable to express our desired healthcare plan.

Lastly, for more education opportunities, please be sure to read about our upcoming consumer teleconferences as well as information about The Oley Foundation meeting held in Saratoga Springs, NY. Happy Reading!

Sincerely,

Heather Gifford, RD, CDN, CNSC

A Note fromOur Guest Editor

4 | Celebrate Life | Nov. 2010, Issue 22

By Heather Gifford, RD, CDN, CNSC

Intestinal failure occurs when the intestines cannot digest and absorb

oral foods and fluids adequately to remain healthy. This can result in

significant weight loss as well as fluid and electrolyte abnormalities.

Often, the severity of intestinal failure is affected by how much healthy

bowel has been lost and the location of the resected or damaged bowel.

OptimizingOral and Enteral Feedingswith Intestinal Failure

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Chronic intestinal failure (CIF) has many possible causes such as: intestinal resection, congenital defect, radiation enteritis, pseudo obstruction, fistula and inflammation of the intestines (e.g., Crohn’s disease or ulcerative colitis), or a combination of more than one of these reasons. Many people with intestinal failure initially require parenteral nutrition (PN) to meet a majority, if not 100 percent, of nutritional needs during the first one to three months after a bowel resection1. For some patients, the remaining healthy intestines begin to adapt, and the use of PN becomes supplemental as more oral food and fluid is absorbed. After a few months, absorption of the remaining small bowel may begin to improve, and typically by one year post-surgery, dependence on PN may lessen. Maximal adaptation can be reached at about two years post bowel resection1. Patients with intestinal failure are typically encouraged to eat to help support bowel adaptation. Certain medications may be an important part of intestinal failure treatment as they, too, can help improve absorption and tolerance of oral foods and fluids. This article will help you find food choices that can help manage intestinal failure. The Industry Insights article on page 22 will address medications that can often be used to help support treatment.

Making Food ChoicesPatients with intestinal failure are often encouraged to eat both for pleasure and to promote bowel adaptation. The old adage, “use it or lose it,” absolutely applies to the bowel, and stimulation of the intestine through oral or enteral intake helps maintain a healthy intestinal remnant. There are some foods that may help improve absorption better than others. Because of malabsorption, patients with intestinal failure usually need to take in many more calories than others of the same height and weight, often

two to four times greater than normal2. Below are some general diet recommendations that can help improve absorption and adaptation. Another article in this edition, “Getting the Most Out of Your New Diet Recommendations: Suggested Food and Nutritional Supplement Tips,” on page 12 focuses on suggested types of foods, snacks and supplements that can be incorporated into the general diet recommendations below.

General Diet RecommendationsEat Small Frequent Meals Eating too much food at one time will increase the likelihood of the food being pushed too quickly through the intestines and fewer nutrients can be absorbed. Spacing out food intake allows for more food/nutrient contact time with the remaining intestine. It is best to eat five to six small meals throughout the day for maximum absorption.

Eat a Balanced Diet Choosing how much to eat from the food groups varies depending on whether a colon is present or not. In general, protein foods should comprise about 20 percent of your total calories, fat should comprise about 30 percent of total calories and carbohydrates about 40 to 50 percent of your total daily calories3. More calories from carbohydrates may be helpful for patients who have a colon since the colon can convert more of the carbohydrates into usable calories and energy.

Drink Liquids Between MealsIt is best to separate foods from fluids to assist in absorption. Drinking fluids at the same time as solids may push the solid food through the intestines too quickly and result in diarrhea and limited absorption. Avoid sweetened beverages such as fruit juice and soda, as well as, caffeine

6 | Celebrate Life | Nov. 2010, Issue 22

since these types of beverages will pull water into the intestine and increase diarrhea.

Oral Rehydration SolutionsOral rehydration solutions (ORS) may be helpful in patients who have an ileostomy and/or stool output greater than 1 liter per day. ORS help keep water in the body (instead of losing it from the body in the form of diarrhea).This means that more fluid consumed is retained vs. excreted. ORS may be critical in preventing dehydration. Talk to your physician or nutrition support team to see if you would benefit from an ORS.

Limit Sugar/Simple Carbohydrate IntakeFoods and beverages high in sugar may cause increased stool output by pulling water into the intestine. The water, then, can not be used for the rest of the body. It is best to limit concentrated sugars and sweets such as table sugar, syrups, cookies, ice cream, cakes, fruit juices and regular soda.

Encourage Complex Carbohydrates and Soluble FiberComplex carbohydrates are found in foods such as breads, whole grains, pastas, fruits and vegetables. These type of carbohydrates tend to improve absorption and decrease the amount of diarrhea or ostomy output. Soluble fiber in the diet helps slow down digestion time and water absorbortion, and add bulk to stool. Soluble fiber can be found in foods such as oats, peas, beans, apples, bananas, citrus fruits, carrots, barley and psyllium. It’s a good idea to try to incorporate more soluble fiber into your daily diet unless otherwise told by your doctor or nutrition team.

Avoid High Oxalate Foods if the Colon is Present Having an intact colon increases the risk of calcium oxalate stone formation, also known

as oxalate kidney stones. Limiting foods high in oxalates, in addition to maintaining adequate urine output (greater than 1200 ml/day), will help reduce the risk of stone formation3. (Table 1).Incorporate Heart Healthy Fats

Into Your DietFat is important in the diet since it contains higher amounts of calories per gram, fat soluble vitamins and essential fatty acids , all of which are needed for a healthy heart, optimal brain function and healthy skin and hair. Try to incorporate fatty acids such as omega-3 into your daily diet. (Table 2).

Limit Lactose (if You are Intolerant)Lactose containing foods typically contain a lot of calcium, protein and vitamin D which are all very important for our bodies. However, some people have difficulties eating or drinking foods with lactose if they lack the enzyme lactase needed to digest this milk sugar. Signs of lactose intolerance include gas, diarrhea and bloating

High Oxalate Foods

Fruits •Blackberries•Blueberries•Fruit cocktail•Grapes (purple)

•Raspberries•Rhubarb•Strawberries•Tangerine

Vegetables •Beans (green, wax)•Beets•Eggplant•Kale•Okra

•Peppers (green)•Potatoes (sweet)•Spinach•Summer squash

Breads •Fruitcake •Wheat germ/bran

Fats •Almonds•Cashews•Peanuts

•Pecans•Sesame seeds•Walnuts

Beverages •Beer•Cocoa/chocolate

drinks

•Ovaltine®•Tea

Table 1 - these foods should be avoided if you have your colon

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after consuming milk products. If lactose intolerance is suspected, talk to your doctor or nutrition team to see if low lactose alternatives or lactase enzyme tablets are an option for you.

Vitamin and Mineral SupplementationVitamin and mineral supplementation will most likely be necessary as absolute absorption will be impaired, depending on what portion of the bowel is affected. Fat soluble vitamins (A, D, E and K) are often required because of decreased fat absorption. Vitamin B-12 supplementation may be needed if the ileum is resected. Zinc, calcium and magnesium supplementation may be required, especially if diarrhea is severe. Chewable or liquid vitamins may be necessary to improve absorption. Your nutrition support team can help determine what additional vitamins and minerals you need.

Enteral Therapy and CIFThe use of enteral nutrition (EN), or tube feeding, may be required if oral intake is not enough to meet your body’s needs, or as a supplement to an oral diet or PN therapy. If EN is used, it is best to feed as proximal (as close to the stomach as possible) as possible to allow the nutrition to have as much contact with the small bowel as possible. The use of a standard formula is often well-tolerated, but if increased stool output is a problem it may be beneficial to trail a semi-elemental (pre-digested) formula3. The use of

elemental formulas has shown to provide no added benefit and should be avoided as they are often hypertonic and can cause diarrhea2.

Enteral nutrition should be infused at a slow rate over 12 to 24 hours in order to allow longer contact time with the small bowel 2.

It is best to use a fiber containing formula if the colon is present as the fiber can contribute to additional calories absorbed daily.

ConclusionChronic intestinal failure typically means that there will be at least some malabsorption of the food and nutrients you consume. The degree of malabsorption, however, will vary depending on the amount of bowel removed, the degree of healthy bowel remaining and the amount of adaptation that has occurred. Nutrition and medication management play a vital role in improving absorption. Improving overall absorption will help improve the chance of lessening your dependence on nutrition support. Your nutrition team can help guide you in the right direction regarding which food and medication modifications may be most helpful for your situation. Be sure to check out subsequent articles in this edition for a review of medication options and suggested food tips to help improve your oral intake and tolerance. t

References

1. Matarese, L et al. Short Bowel Syndrome: Clinical Guidelines for Nutrition Management. Nutrition in Clinical Practice. 2005, 20: 493-502.

2. Rees Parrish, C. The Clinician’s Guide to Short Bowel Syndrome. Practical Gastroenterology. 2005, 31: 67-106.

3. Rees Parris, C, Krenitsky J, Willcutts K, Radigan A. Gastrointestinal Disease. In: The A.S.P.E.N Nutrition Support Core Curriculum. Silver Spring, MD: American Society for Parenteral and Enteral Nutrition; 2007 508-539.

4. Nelson J, Moxness K, Jensen M, Gastineau C. Renal Diseases and Disorders. In: Mayo Clinic Diet Manual. St. Louis, MO; 1994 339: 343.

Foods High in Omega-3

Oils •Canola oil•Flaxseed oil

•Soybean oil•Walnut oil

Nuts •Walnuts

Fish •Albacore tuna•Mackerel

•Salmon•Sardines

Table 2 - omega-3s are heart healthy foods

8 | Celebrate Life | Nov. 2010, Issue 22

The treatment of chronic pain can be a very difficult frontier for both the patient and the physician. Clinician perception of the relative importance of pain and its management can lead to under-treatment. Some healthcare professionals do not want to routinely accept the patient’s self-report of his or her degree of pain as credible; they are often more interested in searching for physical evidence of pain. Fear of regulatory scrutiny may also reduce clinician efforts to control pain. Also, the inability of the patient to report symptoms accurately, such as with impaired patients, may result in poor communication with the healthcare provider and a decreased likelihood of successfully understanding the patient’s needs and treating the pain effectively. There are many incorrect, biased assumptions made about pain and its treatment. (Table 1)

Pain Incidence and CausesSurgery is the single largest cause of acute pain in the United States, with approximately 41.5 million Americans undergoing hospitalization for surgery each year1. The majority of patients in the U.S. report moderate to severe post-surgical pain, even in the face of current treatments and techniques. For a perspective on a broader population, in a 1999 poll, a large proportion of respondents indicated some degree of disability secondary to pain, with two out of three elderly individuals responding that pain kept them from

participating in activities2.

Chronic abdominal pain (CAP) is defined as pain that persists for more than three months, either continuously or intermittently. Intermittent abdominal pain may also be called recurrent abdominal pain (RAP). CAP occurs any time after 5 years of age. Up to 10 percent of children require evaluation of RAP. About 2 percent of adults, predominantly women, have CAP. A much higher percentage of adults have some type of chronic gastrointestinal symptoms that result in pain3.

Just the Facts…Managing Chronic PainBy Mark H. DeLegge, MD, Coram Medical Director, Professor of Medicine, Medical University of South Carolina

Assumptions Made About Pain

1. Physical evidence of pain is more important than self-report measurements

2. Pain does not exist in the absence of detectable tissue damage

3. Pain without an obvious physical source is usually psychogenic

4. The same stimulus produces the same degree of pain in all individuals

5. Analgesic therapy should not be started until the cause of pain is established

6. Non-cancer pain is not as severe as cancer pain7. Use of opioids (narcotics) causes all patients to become

addicted to them8. The use of opioids is only for “aggressive” pain

management

Table 1

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Abdominal pain can be the result of a variety of causes such as: chronic intestinal obstruction (blockage), tumors (primary or metastatic), venous thrombosis, peptic or intestinal ulcers, inflammation of the mid and lower abdomen, pelvic problems in women and occlusion of blood flow to the visceral organs. In addition, patients with fistulas and scar tissue from multiple surgeries may experience chronic abdominal pain. One other cause of chronic abdominal pain that is very much under-recognized is visceral hypersensitivity. This is where the nerve fibers of the gut sense what may be low levels of pain, or normal movements of the intestines, as severe pain. Because the issue of decreased bowel motility (like constipation) is often common in patients with chronic abdominal pain, treatment with narcotic medications can be difficult as these medications may further decrease bowel motility.

Pain PathwayFour steps occur along the pain pathway. These are known as transduction, transmission, modulation and perception. Transduction is the process by which nerve endings participate in translating stimuli (e.g., a pinprick) into a pain impulse. Transmission is the process by which impulses are sent to the spinal cord and then along the nerve tracts to the brain. The somatosensory cortex of the brain is thought to be involved in pain reception, whereas the frontal cortex and limbic system of the brain are thought to be involved with the emotional responses to it. Modulation is the process of blocking or amplifying pain-related nerve signals. Pain-sensing receptors are present in the ascending nerve tract, and can be turned on and “intensified” by painful stimuli; however, the pain system also contains the ability to block pain sensation through descending nerve pathways.

Perception refers to the subjective experience (what the patient feels) of pain that results from the interaction of transduction, transmission, modulation and the psychological aspects of the individual.

Diagnosing PainThe patient’s history is the most helpful information that a doctor uses to determine the cause of abdominal pain. The characteristics of the pain (sharp, dull, cramping, burning, twisting, tearing and penetrating), its location and relation to eating or to having a bowel movement are important clues. Additional factors that are useful include the pattern of pain, its duration, radiation (spread) to other areas of the body and its association with other symptoms, such as jaundice (yellow skin), nausea, vomiting, bleeding, diarrhea or constipation.

Findings on physical examination also are helpful. Key findings include areas of tenderness, the presence or absence of bowel sounds or abdominal distention, masses, organ enlargement and evidence of blood in the stools.

Based on the history and physical examination, the doctor may or may not have a clear idea about the cause of pain. Sometimes a diagnosis is made and treatment can be started. In other cases, diagnostic tests are used to confirm or to exclude a specific diagnosis. Many tests can be ordered for these purposes. Frequently used tests include analysis of blood, urine and stool samples, x-rays of the abdomen and endoscopy.

10 | Celebrate Life | Nov. 2010, Issue 22

Treating PainMany painful conditions can be managed adequately by the primary care clinician. However, referral to a pain specialist or a pain management team may be best for certain cases of chronic pain, especially pain that is interfering with a patient’s quality of life and daily activities. A pain management team may consist of many members (Table 2). Referral to a pain specialist should ideally occur before significant disability or loss of function develops or poor coping strategies begin to emerge.

Once a diagnosis is made, treatment can proceed for that condition. Whenever possible, pain management should use multimodal (more than one) pain management therapy. Analgesics (pain medications) exert their activity at various sites along the pain pathway. Thus, multimodal treatment increases the likelihood that pain signals will be interrupted and pain relieved. Research has shown that analgesics with differing mechanisms of action can have additive or synergistic effects through a variety of mechanisms allowing the use of lower doses of each medication than would be used with one drug by itself. Unless contraindicated, all patients should receive an around-the-clock regimen of nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, cyclooxygenase-2 inhibitors (COXIBs) or acetaminophen (Tylenol®). Other medications that can be used are narcotics, anti-depressants (can help accentuate the pain medication effects), nerve-ending modulators (e.g., neurontin) and local anesthetics (topical or skin agents such as lidocaine).

The idea that polypharmacy (combination therapy) should be used for pain management is not new. The logic is that to most successfully treat pain, three strategies are beneficial:

1. Attempt to “attack” pain at as many points along the pathway as possible

2. Minimize the dose of medications with high side effect profiles

3. When treating pain, all decisions should be made with respect to the individualized treatment for the patient

Finally, there is a host of information evaluating the use of “other therapies” for pain management (Table 3). Most importantly, the adequate treatment of pain requires a knowledgeable physician, a patient who is open to various treatment modalities and excellent communication between the patient and the physician. t

References

1. National Center for Health Statistics. 1998. Health, United States,1998.Hyattsville, MD: Public Health Service. 1998.

2. Centers for Disease Control and Prevention (CDC). Prevalence of disabilities and associated health conditions among adults—United States, 1999. MMWR Morb Mortal Wkly Rep, 2001;50:120–125.

3. Barbero GJ: Recurrent abdominal pain. Pediatrics in Review 4:30, 1982 and from Greenberger NJ: Sorting through nonsurgical causes of acute abdominal pain. Journal of Critical Illness, 7:1602-1609, 1992.

4. National Center for Health Statistics. Hyattsville, MD: Public Health Service. 1998.

Pain Management Team

•Physician•Nurse specialists•Physical therapists

•Psychiatrists•Psychologists•Social workers

Table 2

Other Therapies for Pain Management

•Heat and cold application•Therapeutic exercise•Physical manipulation•Massage•Acupuncture

•Transcutaneous electrical stimulation

•Alternative medications•Behavioral management

Table 3

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With the holidays fast approaching, we are pleased to introduce to you the Great Escapes Travel Program!

Coram’s Great Escapes Travel Program is your passport to successful travel! The program focuses on allowing our consumers to enjoy the pleasures of travel with the peace of mind that we are there for support 100 percent of the way — all without interrupting your infusion therapy support.

Patients that are evaluated by their doctors prior to their trip and are healthy enough to leave home may take part in this program. The Great Escapes travel kit is packed with checklists and travel tips to help patients make sure they have everything they need to enjoy their vacation. From planning to packing, Great Escapes provides therapy-specific tips for patients on the go. Whether it’s traveling across the country or across the globe, Coram has you covered. To learn more about our Great Escapes Travel Program and to receive the travel kit, contact your local Coram branch. t

12 | Celebrate Life | Nov. 2010, Issue 22

Getting the Most Out of Your New Diet Recommendations:

Suggested Food and Nutritional Supplement TipsBy Dr. Lillian Harvey-Banchik, MD, FACS, CNSP

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Developing chronic intestinal failure (CIF) may mean many changes to your lifestyle, including

changes to your eating habits. CIF is characterized by alterations in your intestines that impair

the ability for you to both digest food and absorb the nutrients. The most obvious signs of this

can include alterations in your bowel habits and the inability to tolerate some, if not all, of your

usual foods. More insidious though, is the potential development of malnutrition which can

occur over time as your eating habits change.

Many people first try to deal with the symptoms caused by their progressive intestinal failure by slowly changing their diet to eliminate foods which may cause distress. Some foods which typically can cause problems include:

•Dairy products, due to the development of lactose deficiency

•Foods high in fiber since some conditions, such as Crohn’s disease, can produce a chronic, partial small bowel obstruction and high fiber foods may worsen symptoms

•Foods high in fat

•Spicy foods such as chili or curry

Unfortunately, once you start eliminating foods you can be left with a rather bland, unpalatable diet. Add that to the lack of appetite common among many patients who have chronic medical conditions, and it is easy to see why many patients with CIF develop malnutrition. If malnutrition develops or worsens, your physician may suggest that you further change your eating habits — possibly switching to a diet of liquid supplements or possibly the insertion of a feeding tube directly into the stomach to increase your food intake.

With that as a background, what can be done to prevent the development of malnutrition and to maximize the benefits of your enteral (both oral and, if necessary tube feeding) nutrition?

Adjusting Your Eating HabitsThe first thing that you will have to realize is that there will need to be changes in you eating habits. A previous article in this edition, “Optimizing Oral and Enteral Feedings with Intestinal Failure,” reviews general food guidelines that can be helpful at improving absorption and aiding in bowel adaptation. As that article states, it is often best to consume small, frequent meals throughout the day vs. three “regular size meals”. Although we have been raised to think of proper eating habits as being three meals a day with a possible afternoon and/or bedtime snack, this is not the best way to optimize food intake with CIF. Unless your intestinal tract is severely damaged, it may retain some ability to digest and absorb nutrients — that ability can be promoted by adjusting how you eat. In CIF the bowel will process and absorb nutrients better if they are taken in slowly over a prolonged period of time. To make this work to your advantage, you need to eat small quantities of food throughout the day. Obviously, you don’t want to be sitting at the table all day so strategies need to be developed to allow you to eat small quantities of food during the course of the day.

Another change which will need to be made is to change the type of foods that you eat. In the processed food environment we live in, it is very easy to fill up on “empty calories;” but in the case

14 | Celebrate Life | Nov. 2010, Issue 22

of a person with CIF, it is vital that every bit of food consumed be of high quality to maximize nutrient intake.

Maximizing Your Nutrient Intake

Foods High in Protein and CaloriesDuring your main meals, you need to try to optimize the intake of protein and calories while keeping the meal palatable and in accordance to foods designed to aid in absorption and adaptation. Suggestions for foods that will help include:

•Fish, broiled or baked but not fried

•Skinned chicken parts, again broiled or baked. Avoid the skin if possible; it is very high in fat without adding any significant nutritional value

•High protein pasta

•Vegetables as tolerated

Spices and SeasoningsUse spices and seasonings in your food to improve the flavors. Although your doctor or dietitian may have advised the omission of pepper or chili powder, there are many other herbs and spices which can be used to flavor food without causing gastrointestinal (GI) problems. Some of these are:•Cumin, either in whole seed or ground

•Herbes de Provence

•Marjoram, oregano, rosemary

Snacks High in Protein and CaloriesWhen you snack during the day, again, it is important to eat not just “healthy” snacks, but those which supply large quantities of calories and protein. Some of the snacks which can be eaten include:

•Hard boiled eggs, possibly the whites only if you cannot tolerate the fat in the egg yolk

•Soy-based cheese substitutes, these are lower in fats and high in protein

•Peanut butter (if you can tolerate peanuts) on crackers or soy crisps

•Soy-based, dairy-free frozen “ice cream” — even if you can tolerate milk, the soy-based products have more protein in them.

Supplemental NutritionWhile you are in the home, a very successful plan can include liquid dietary supplements. Each eight ounce can of supplement contains somewhere in the range of 250 calories of high quality nutrition. If you are able to tolerate four cans per day, that is 1,000 calories which can be added to your diet. Unfortunately, even the best of these liquid supplements can be difficult to drink in large quantities. Most people, when presented with the suggestion to drink four cans per day, cannot do so.

This is where the change in eating habits comes into play. Instead of trying to drink an entire eight ounce can in one sitting, use an insulated travel mug like those used to keep coffee warm or chilled beverages cold. Pour the chilled supplement into the mug, and carry it with you everywhere in the home. Every time you change location take a small drink, about one tablespoon in size. Likewise, every time something else in your environment changes — the phone rings, you change channels on the TV, etc. — take a similar drink.

Most patients who can tolerate liquids by mouth find that if they consume the supplements in this fashion that they do not become bloated

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or “filled up”. If you can tolerate sipping the supplements this way, it is likely that you will be able to consume one 8 ounce serving every two hours making it much more likely that you will be able to drink the four servings per day.

When you are out of the home, try to bring some of the suggested snacks with you to eat during the day. If you eat out with friends, review the menu carefully. These days, most restaurants include items on the menu that you should be able to eat, including pasta dishes or broiled fish or meats.

If your healthcare provider feels that is it better for you to add tube feeding to your nutritional treatment, remember, this does not mean that you cannot eat. What it does mean is that you will need to work with your provider to create a time schedule so that you spend the minimum amount of time attached to the feeding pump. Bolus (syringe) feedings may not be feasible, but it is certainly possible to arrange the amount of time you will need to be attached to the feeding pump to allow you to go to work, leave home for other reasons and maximize your freedom and mobility.

Remember, the whole intent of nutritional support is to allow you to have the most normal life style possible. Do not be afraid to ask questions, make suggestions for changes in the feeding schedule and be an advocate for yourself. t

Remember, the whole intent of nutritional support is to allow you to have the most normal life style as possible.

16 | Celebrate Life | Nov. 2010, Issue 22

Celebration of Life Circle Award 10 Year Anniversary

Brooklyne Williams Brooklyne was born pre-term to her parents Greg and Monica. From early in Monica’s pregnancy, they knew that Brooklyne would need surgery to repair her intestine that was trapped outside her body. Unfortunately, at her delivery all but about 10 percent of her intestine was damaged. Through her exceptional physician and family support she has gained physical and emotional strength, and is now 16 years old! It is Brooklyne’s perseverance and positive outlook, however, that has allowed her to blossom and lead a life that is truly amazing. Classmates and friends who know Brooklyne would hardly suspect the challenges she has faced. She is able to maintain her grades of A’s and B’s in spite of having to miss school occasionally. Brooklyne prepares her own TPN hook-up in the evenings. She keeps her supplies in an orderly manner when Coram delivers them. She also runs her own

This issue marks our 10th anniversary of our Celebration of Life Circle Award! Started in 2000, the first consumers were recognized in 2001 at the Oley Annual Consumer Conference. The Celebration

of Life Circle Award program recognizes long-term nutrition support consumers and their caregivers. Throughout the country, home parenteral nutrition and home tube-feeding consumers are enjoying full and productive lives because of their nutrition support therapy and because of their personal strength and resiliency.

We would like to congratulate three Celebration of Life Circle Award winners who exemplify the spirit of determination to live life to its fullest! Two of our award recipients have short bowel syndrome and have functionally challenged intestines requiring chronic TPN support, while our third award winner was a caregiver to a foster child with short bowel syndrome. We are privileged to help care for these consumers and to share with you each of these extraordinary individuals stories.

In many ways, Brooklyne is a typical teenager. Her friends and classmates hardly suspect the challenges she faces.

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pumps like a professional. When she has to go into the hospital, she provides the nurses and other medical staff with all her care information.

Brooklyne is a member of the Silver Legacy Dance team at her high school. She gets to school by 6:00 a.m. each day to practice. In addition to being a talented dancer, she has a beautiful voice and was a member of her junior high choir. Also in junior high, she was recognized with academic awards and a very special inspiration award because of her acceptance of her illness and the fact that she never used it as an excuse to get out of school work or class. Brooklyne is now taking classes in high school that will help her with credits toward her college classes. She plans to be in the medical field. In many ways, she is a very typical teenager, but in her grandmother’s eyes, she is a diamond that is cut almost to perfection!

Kassandra Delossantos Kassandra has received TPN all of her life. She was born with gastroschisis, and postoperatively, has had short bowel syndrome. She has had six intestinal surgeries and several port and PICC lines placed. Although important, this is not what strikes you when you meet her. What strikes you is that she is a bright, curious and delightful young lady who steals your heart the minute you meet her.

Kassandra is always asking questions. Despite her small size, she has a BIG personality and enjoys all the things that 9-year-old girls enjoy such as Hannah Montana music, sleep overs with friends, soccer and anything Hello Kitty®. She likes to scrapbook and loves school.

Kassandra has had the opportunity to meet another young woman who also requires lifetime TPN support. Her new friend is in her 20s and has grown-up with TPN. Kassandra had many questions for her, and they spoke of everything from sports to college to dating. Their meeting was a memorable time for Kassandra who made a friend and could see a future for herself even if she is on nutrition support.

Kassandra’s faith and positive approach to life has allowed her to persevere. She is both amazing and special, and stands out as a young lady wanting to make a different in spite of , and because, of her condition.

Kassanndra recently had the opportunity to meet a long-term TPN consumer — and new friend — who helped her see a strong future for herself.

continued on page 18

18 | Celebrate Life | Nov. 2010, Issue 22

Maureen BishopMaureen was a foster mom for a beautiful 14-month-old girl awaiting transplant for intestine, liver and pancreas. Maureen is extremely dedicated to the little girl and is an incredibly strong advocate for her — not only with her daily care of multiple infusions and frequent hospitalizations, but also moving her through the governmental hoops and bureaucracy to get her multi-visceral transplant approved. Once when the little girl was hospitalized and waiting a transplant, Maureen stayed with her in the hospital throughout the transplant process, even missing the Christmas holidays with her family and friends.

Maureen demonstrates an amazing capacity for love and kindness, and cares for a second disabled foster daughter at her home. She has taken on the responsibility of loving and caring for both of these children after raising her own kids who are now grown. Maureen has also been an advocate for first-time parents with a short bowel syndrome baby, attending a care conference at the local hospital when the baby was being prepared for discharge. She has shown selfless love and dedication helping others, putting their needs before her own. t

The Celebration of Life Circle Award recognizes nutrition consumers and caregivers for their commitment towards living an independent and full life.

To nominate someone you know for the Celebration of Life Circle Award, please send an email to CelebrateLife@coramhc.com.

Maureen Bishop (left) shares a smile with Carol Lenzen, Coram Pharmacy Manager (middle) and Karen Youket, Coram Dietitian (right).

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The Oley Foundation 25th Annual Consumer/Clinician Conference

This year marked the 25th anniversary of The Oley Foundation’s Annual Consumer/Clinician Conference. The conference is one of the largest that Coram sponsors and was held in Saratoga Springs, New York during the last week of June.

The Colyn Woods Memorial Oley Golf Classic started things off. Colyn Woods was a young patient who suffered from intestinal dysmotility and mitochondrial disease. He depended on intravenous feeding for most of his life, and passed away this January at the age of 15. The golf tournament was held in his honor and as a tribute to Colyn, Coram sponsored the 15th hole. We also sponsored a foursome to compete in the tournament.

Coram and Apria sponsored a dinner for our long-term consumers and their families. The dinner was a great opportunity for our employees to meet with consumers face-to-face in a relaxed environment, and gain feedback from them on how we can refine our program even further to best meet their needs! Our Center of Excellence clinicians were on-hand to answer questions about treatment, and gave an update regarding the Nourish Nutrition Support Program™ innovations we have made since our last Oley meeting.

In keeping with the meeting theme of horse racing (one of the things Saratoga Spring s is famous for!), during conference hours in the exhibit hall, the Coram and Apria booth had a designated area that welcomed patients to dress up as the winning jockey and get their picture taken in “Coram’s Winner Circle”.

Several of Coram’s team spoke at the conference on a variety of topics ranging from a tube feeding workshop to “What Should I Eat?” where recipes that TPN patients can tolerate were shared. A walk-a-thon and picnic concluded the Oley conference. We are also very proud that our Albany branch was the emergency contact for all conference attendees!

Everyone that participates knows how special this event is for the patients and their families. For more information about the event and The Oley Foundation, please visit www.oley.org.

20 | Celebrate Life | Nov. 2010, Issue 22

Antidiarrheal medications: Most patients with intestinal failure will benefit from an antidiarrheal medication. These medications are designed to help decrease stool output, improve absorption of foods consumed and prevent excessive fluid loss. Examples include: Imodium®, Lomotil®, codeine, morphine or tincture of opium, the last three medications also being considered as narcotics. Most doctors will start with a less potent medication first, and try more potent medications as needed. It is not uncommon to be on more than one antidiarrheal medication to help aid in maximum absorption. It is usually best to take these medications about 30-60 minutes before a meal or snack. In those patients with malabsorption issues (such as short bowel syndrome and chronic intestinal failure), it may be better to take these medications in liquid

form. Also, because only some of the medication may be absorbed with the rest of the medication being lost in the stool, higher doses of the medications may be required then used for the typical patient with diarrhea. Discuss your medication dosing with your doctor to assure it best meets your needs.

Acid reducing medications: Acid reducing medications are designed to reduce the production of acid in the stomach and intestines. With newly diagnosed short bowel syndrome, the stomach often produces too much acid. Too much acid can damage the bowel lining and interfere with digestion of foods by denaturing digestion enzymes in the digestive tract. In addition, too much acid secretion can make stool volume increase. There are two different

Medication Management of Chronic Intestinal FailureThere are several different medications available for those with chronic intestinal failure (CIF) that can help improve absorption and decrease acid production. Dosages and administration of these medications may need to be adjusted due to impaired absorption. Medications often come in various forms such as oral, sublingual (under the tongue), liquid, rectal and IV. It is best to speak with your doctor and nutrition support team about the dose, administration and type of medication you may require. The following are some common medications used in patients with intestinal failure.

InsightsIndustry

By Heather Gifford, RD, CDN, CNSC and Mark DeLegge, MD

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types of acid reducing medications: histamine 2 (H2) blockers and proton pump inhibitors (PPI). Examples of an H2 blocker are: Pepcid®, Zantac® and Tagamet®. Examples of PPI’s are: Nexium®, Prevacid®, Prilosec®, Aciphex® and Protonix®. Your doctor will help decide which type and amount of acid reducing medication is best for you.

Anti-secretory agents: Some patients may require the use of other anti-secretory medications (reduce secretions from the gastrointestinal [GI] tract) to help improve absorption by decreasing the volume of overall GI secretions. These medications are often used for those who do not have enough remaining bowel to adequately absorb the antidiarrheals and acid reducers. Examples of anti-secretory medications include octreotide (intravenous or subcutaneous delivery) and clonidine (topical application). These medications are typically used for patients who have greater than 3 liters of output daily. Caution needs to be used with these medications, however, as they may impact bowel adaptation (the ability of the small bowel to grow to absorb more fluids and nutrients than normal).

Bile acid binders: The body needs bile salts to adequately absorb fat and fat soluble vitamins. Bile salts are made in the liver and reabsorbed in the last portion of the ileum (small bowel). Bile salts may be decreased in the body depending on what part and how much of the ileum was removed. If bile salts are not reabsorbed because of some small bowel resection (generally a smaller portion of terminal ileum), then significant bile salts pour into the colon,

irritate it and cause diarrhea. In this situation, bile salt binders may improve diarrhea. However, if you have had a large amount of terminal ileum resected, you may not have any ability to reabsorb any bile salts. The addition of bile acids binders in these patients will only lead to decreased body amounts of bile acids, impaired fat absorption and significant diarrhea. The term for this type of fat malabsorption is steatorrhea. Your physician and nutrition support team can help determine if this is medication would be beneficial.

Others interventions used in short bowel syndrome: Glutamine (an amino acid to stimulate growth of the small bowel mucous membrane) and growth hormone (a medication to stimulate the growth of the small bowel mucous membrane) are examples of other medication that may be used with CIF. The studies for both glutamine and growth hormone are conflicting. Your nutrition support team and your physician can help to decide if either of these treatments may be of benefit to you. t

22 | Celebrate Life | Nov. 2010, Issue 22

The BeautyOf Mules

By Robbyn S. Kindle, RDBy Robbyn S. Kindle, RD

Stubbornness is usually considered a bad personality quality. Mules are often stubborn and don’t want to do what you want them to. In fact, some people have been known to be called “stubborn as a mule”. I’ve often been referred to as being stubborn, sometimes in a bad way like a mule, but also sometimes in a good way, in that I’m too stubborn to die.

My life of stubbornness started quite unexpectedly in January of 1991. Up to that point, my life was fairly normal. I was in college working towards a Bachelor’s degree in Music Education. I was young and looking forward to the “normal” life that lay ahead: marriage, house, nice job and the 2.5 kids. My “normal” life suddenly disappeared and I had to get used to my new life as a medical wonder. I had to figure out how to be stubborn enough to stay alive.

One morning after getting sick to my stomach, I began to have belly pain that increased as the day progressed. By the afternoon, I was in the emergency room, and by midnight, I was in surgery. That was the first time my family and I had heard that I had been born with a genetic deformity that allowed my intestines to move freely inside my abdomen. Getting sick that morning had caused a small 2 inch section of my small intestine to flip over and cut off its blood supply. As it swelled, it caused more of my intestine to lose blood, progressing in this manner until nearly my entire intestinal tract was dead. I

was fortunate that the surgeon on call that night began his career in the Vietnam War. He later told me that his experience there is what got us both through my emergency surgery.

The following day I awoke in ICU where they informed me that I no longer had most of my intestines — 90 percent of my digestive system was gone. My duodenum had been resected to about midway along my transverse colon. At the time, I had no idea what they were all talking about, I still had my stomach so I was OK, right? WRONG!

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I was naive, and very ignorant of how my body worked. I suppose at the time, ignorance was a good thing because as I was given the grim prognosis that I might not live for much longer, and that if I did survive my life was going to be very difficult. I continued to believe that because I had a stomach I was going to be fine.

Prior to this point in my life I had never experienced any sort of medical crisis, so the life of daily parenteral nutrition (PN) that lay before me was totally and completely foreign. Maintaining sterility was a new thing to me, and I frequently got it wrong which meant frequent hospitalizations. I eventually got tired of getting sick and going in-and-out of the hospital, so I started to pay close attention and to educate myself on how to properly administer my PN and take care of this new body.

This began a new realization regarding stubbornness: sometimes it is harmful. I had continued to think that things were eventually going to return to “normal”, but what I really was doing was denying the truth and hurting myself. I never gave up on the idea that I would someday be able to eat “normally” again and get off the daily PN feedings because I was so sure that the well-educated doctors had it all wrong. But they weren’t wrong, I was. It took a while, thanks to my perpetual stubbornness, but I eventually accepted my new life and even came to relish its differences. For example, my monthly food bill was almost nonexistent, and not having to eat regularly did have its advantages.

After a few years of adjusting to the ritual of the daily PN infusion, I had discovered my new “normal.” So what do “normal” people my age do? They go to school to learn a career. I had thought of becoming a music director, but now that my

life was different so were my life goals. I wanted a future as a Registered Dietitian helping other PN consumers; this meant starting my degree over. Though daunting at first, and very exhausting with my limited energy level, I persevered thanks in no small part to my stubbornness. My classmates gradually became used to me and my extra backpack that I had named “Fred”, as well as the occasional days where “Fred” would need to be tended to during the middle of class. I also became used to not eating. I actually found it useful that I didn’t need to stop and eat like my classmates — I could continue with whatever it is was I was doing and finish early. The PN and Fred were now a part of me. It was who I was, and I really didn’t see myself as being different from the “norm”.

Then came another major hurdle, a new level of stubbornness that needed to be discovered. After five years of the daily TPN, my liver started to object to its presence and I developed severe cholestasis and liver failure. In my usual stubborn fashion, I refused to let the liver disease win and continued my studies. However, four years later at the start of my last semester of school with only two classes left before completion of my degree, the liver disease started winning the battle over my stubbornness. I desperately needed a new liver, but in order to get one I also needed enough of a digestive system so that I would no longer require the PN — which had caused the liver problems in the first place. This was a problem because a small intestine transplant was still considered experimental at the time, and only three hospitals in the country were able to perform the type of transplant that I needed to stay alive. Another level of stubbornness took over and I refused to allow myself to believe that I would die.

24 | Celebrate Life | Nov. 2010, Issue 22

The final straw in that last semester of school, and what was the “beginning of the end,” happened one night as I brushed my teeth before bed. My gums started bleeding and wouldn’t stop. My education had taught me enough to know what was happening, and I dreaded what was coming. I laid awake most of the night spitting blood, occasionally falling asleep for a few minutes only to wake up vomiting more blood. My dad and I had moved into a house together a couple of years earlier so that he could help take care of me when I was sick. I couldn’t bring myself to

wake him once again to tell him we needed to make another trip to the hospital. This trip I knew would be different. This time it was going to take every ounce of stubbornness in my body to get back home.

Much of those next few months are a blur in my memory, but I do remember that although I knew I was very sick and close to death, I never actually believed that I would die. Many times I wanted it all to end, but not in death. I just wanted to go home and

resume my life as it had been. After all, I had a cat at home that needed my attention, and I wanted to finish that Bachelor’s degree that I was so close to getting. For so many years, the dream of walking across the stage to accept my degree was what kept me going, and leaving it unfinished was disturbing to my stubborn nature.

After four months of waiting, most of that time spent in ICU on constant kidney dialysis and fighting pneumocystis pneumonia, I finally got a liver, kidney, pancreas and 10 feet of small intestine! Now that I had the new organs that would keep me alive, I had to do just that, be stubborn enough to stay alive. My donor was a 7-year-old girl named Zoe. It was now up to me to live for both of us.

I spent eight months in the hospital without ever going home, including the time before the transplant and recovering afterwards. Compared to the first surgery and recovery from the resection, this one was much more grueling. It took all the stubbornness I could muster, and more from the friends, family and the medical personnel around me to not give up. I had to learn how to do everything all over again — walk, talk, sit up, hold a pen, and most importantly, eat.

After years of not needing to eat, I had gotten quite used to not eating anything at all unless I wanted to, not because I had to. Now I HAD to eat, but I wasn’t hungry, was extremely nauseous and couldn’t stand the taste or texture of most food. It was discovered during the transplant surgery that my stomach was diseased and needed to be removed. So now that I was trying to convince myself to eat, I had no stomach to tell me I was hungry. This is where my stubbornness worked against me yet again. Being almost a dietitian, I knew not only that I had to eat but also what I needed to eat in order to get off the PN; only, I couldn’t get my body to accept food no matter what. The nausea was constant. Convincing myself to swallow required some skill because most of what went down tended to come back up. And what did go down just kept

I’ve often been referred to as being stubborn, sometimes in a bad way like a mule, but also sometimes in a good way, in that I’m too stubborn to die.

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going without stopping along the way. But my stubbornness would not let me give up, so I kept trying different foods finding what worked and what didn’t.

It took almost three more years before I finally was able to put Fred away for good. There were numerous problems along the way — the primary of which was that despite having an adequate amount of intestinal tract, it was simply not absorbing as well as I needed it too. Now, I am able to maintain my weight for the most part, though gaining weight is a bit difficult, and I can eat just about anything I want. Several people have commented that they wish they could eat like I do and not gain a pound; however, I know that if they knew what I went through every day, they really would prefer to keep their bodies just the way they are.

Every day I must drink 10 bottles of water (160 ounces) and eat 100 grams of high-quality protein and at least 2000 calories just to maintain my health. The really unfortunate part is that my monthly food bill is enormous, and most of what goes into my intestinal tract still goes right through without stopping (talk about money going down the drain). But being stubborn, and having an aversion to feeling bad, I maintain my strict standards to get my minimal daily requirements. If I don’t get the minimum requirements, then the next day I am almost worthless as I don’t have enough energy to concentrate.

Because I was so close to finishing my degree when I became sick, my professors obtained permission from the American Dietetic Association and the university I was attending to allow me to graduate and be eligible to sit for the national exam. Although I was unable to

walk across the stage with my fellow classmates the year I graduated, the university was kind enough to allow me to walk the following year. The dream that had kept me going for so long had finally come true. In May of 2001, I walked across the stage at Texas Christian University and accepted my Bachelor’s of Science in Nutrition and Dietetics. To my surprise, when I looked at my degree, I had actually graduated Cum Laude. Even with the PN and liver disease, I had kept my grades up and finished with a 3.65 GPA. A few months later, I passed the national exam and officially became a Registered Dietitian.

It’s been two and half years since the last time I was admitted to the hospital; I am fortunate to be doing very well. I am also engaged to a wonderful man who has encouraged me to continue my education. Getting my Bachelor’s degree was an enormous accomplishment, but I’ve decided to obtain a graduate degree. I am now in graduate school and hoping to finish my Master’s in Biomedical Science next year. After that, who knows — maybe I’ll go all the way and get a PhD. I still hope to work with others who are fighting the health battles that I have fought, and I want to encourage others to keep going. It is my hope that others will see my stubbornness and determination to survive and do the same.

On May 1, I celebrated a huge milestone — the 10-year anniversary of my organ transplant. It was a day that many people, including me, thought would never happen. The only word that can be used to describe it is “miracle”. A part of me still finds it unbelievable that I’m still alive, but another part of me, the part that is stubborn and can never give up, is looking forward to celebrating my 20-year anniversary. t

26 | Celebrate Life | Nov. 2010, Issue 22

What is a Living Will?A living will is one part of advance directives that outlines the specific medical treatment preferences in end-of-life situations. It is a written, legal document that spells out the types of medical treatments and life-sustaining measures you do and don’t want — such as mechanical breathing (respiration and ventilation), tube feeding or resuscitation. It is typically signed in advance while in good health, and specifies the decisions you wish to be made regarding your medical treatment in the event you become incapable of making or communicating them. In some states, living wills may be called healthcare declarations or healthcare directives. Anyone age 18 or older may prepare advance directives.

The Importance of a Living Will

By Karen Hamilton, MS, RD, CNSD

Infor your

formation

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Why is a Living Will Important?A living will is extremely important if you have a debilitating diagnosis or are going to undergo some sort of procedure that could incapacitate you and leave you without the ability to make sound decisions regarding your care. It is usually accompanied by a medical power of attorney (POA) that is given to a trusted loved one who will make legal and healthcare decisions for you when you are unable. When you lose the ability to make decisions for yourself, your loved one will have to make sound decisions for you. Having written instructions can help reduce confusion or disagreement. A living will takes the guess work out of what your loved one and healthcare team “think” that you would want to have done, and allows them to do for you “what” you actually want done.

Considerations When Developing a Living WillAlthough you can’t predict what medical situations will arise, there are a few treatments that should be taken into consideration when developing a living will. It may also be helpful to talk with your doctor if you have questions.

•Resuscitation. Determine if and when you would want to be resuscitated by cardiopulmonary resuscitation (CPR) or by a device that delivers an electric shock to stimulate the heart.

•Mechanical ventilation. Consider if, when and for how long you would want to be placed on a mechanical ventilator that will take over your breathing if you are unable to do so.

•Nutritional and hydration assistance. Decide if, when and for how long you would want to be fed via a tube or intravenously once you become incapacitated.

•Dialysis. Determine if, when and for how long you would want to have a machine remove waste from your blood and manage your fluid levels when your kidneys no longer are functioning.

•Organ donation. You can also specify in your advance directives any wishes you have about donating your organs, eyes and tissues for transplantation or your body for scientific study. If you wish to donate your body for scientific study, contact the medical school closest to your home for details.

In determining your wishes, think about your values such as the importance to you of being independent and self-sufficient, and what you feel would make your life not worth living. Would you want treatment to extend life in any situation? Would you want treatment only if a cure is possible?

How to Plan for End-of-Life or Severely Debilitating IssuesInjury, severe illness and death are not easy subjects to talk about. But by planning ahead, you can be sure that you will receive the type of medical care you want and you can relieve the burden from your loved ones of trying to guess what you would want done. Start by having a conversation with your loved ones letting them know that you are planning on developing advance directives and explain your feelings about specific medical care you do and do not want in different instances.

If you want to encourage family or other loved ones to create advance directives, let them know that it is important to you that you know how they would want to be treated. It is good to approach the subject in a reassuring and matter-of-fact manner.

continued on page 27

28 | Celebrate Life | Nov. 2010, Issue 22

Since a living will most likely cannot cover every potential medical situation, it is important to consider designating someone as a medical power of attorney. Your medical POA will be guided by your wishes as outlined in your living will, but has authority to interpret your wishes in situations that are not fully addressed in the living will.

Choosing a Medical Power of AttorneyIf you choose to designate a medical POA in addition to having a living will, you will need to trust that this person has your interests at heart, understands your wishes and will act accordingly. He or she should also be mature, levelheaded and comfortable with candid conversations. Your medical POA doesn’t have to be a family member, and can be different from the person you choose to handle your financial matters. The person you choose does not have to live in the same town or state that you do, but must be available to speak with your doctor should the need arise.

Completing Your Living WillYour advance directives should be in writing. Each state has its own laws regarding advance directives, so make sure you are completing your state’s forms which are available on many different websites. Although it isn’t required, you may want to consult an attorney about this process.

Once you’ve filled out the forms, give copies to your doctor, the person you’ve chosen as your medical POA and your family members. Remember, if you put your advance directives in a secure place, like a safe-deposit box, it might

only make it difficult for your loved ones to find the forms when they need them.

As your health or perspective on life changes, you may want to review and change your advance directives. You can change them at any time. Simply create a new advance directive form, discuss with and provide copies to your medical POA, family and doctor, and ask them to destroy the earlier version. If you don’t have time to redo the forms, you can always cancel your advance directive by telling your medical POA, family and doctor. The living will and medical POA authority only go into effect if you are unable to make decisions for yourself, as determined by your doctors.

ResourcesDownload your states advance directives from: www.caringinfo.org/stateaddownload. t

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Tuesday, November 16: Probiotics — What You Need to KnowA review of probiotics, what they are and why they are important to you.

Featured Speaker: Melinda Parker, MS, RD, CNSD, Clinical Director, Nutrition, Coram

Small Steps to Big Steps 2010 Informational Teleconference Series

Join other nutrition consumers for this free teleconference series — it’s a great way to learn about key topics for nutrition consumers from leading clinical and advocacy experts, all from the comfort of your home!

We have had an exciting line up of topics this year for our consumers! Our final teleconference of the year is listed below. And by popular demand, we are archiving past presentations on our website, WeNourish.com. To listen to a past call, please visit WeNourish.com/consumers/events.aspx.

•All calls begin at 7pm EST / 4pm PST

•Call toll-free: 866.418.5399

•Entry Code: 3036728726

joining a call

If you’ve missed a call, don’t worry! You can still listen to it online at WeNourish.com/consumers/events.aspx.

Missed a Call?

“I have been diagnosed with Chronic Intestinal Failure. Now what?”

By Linda Gravenstein, Consumer Advocate

ornerC

Topics for the Advocacy Corner usually come directly from questions or issues from our readers. The title of this article comes from recently diagnosed short bowel syndrome consumers, but I believe my answer can benefit all who require long-term nutrition support.

Instead of using the term chronic intestinal failure (CIF), I prefer to call the diagnosis FCI, or functionally challenged intestine! To me, the condition of CIF is really no failure on the part of the consumer, but rather a challenge to find a new way to live life to its fullest! I have never met a consumer with a functionally challenged intestine that I would call anything but successful and heroic. Heroes are people challenged daily with an alternate lifestyle after diagnosis, but who are successful at managing their diagnosis and adapting to their challenges.

The advice I share with you in answer to the question, “I have been diagnosed with chronic intestinal failure, Now what?”, comes from my many friends who have a functionally challenged intestine. They suggest the following tips to help those with a long-term condition.

• Get a notebook and write down all verbal communication from your doctor, pharmacist, nurse and dietitian. Realize that you are now a member of a healthcare team and that everyone is following your doctor’s orders. If you have questions, write them down when you think of them. You are dealing with something new and complicated, and you might forget your questions when talking to a member of your team.

• Become as independent as you can. Learn from your healthcare team. If you feel you need a little review in a particular area, call your branch and ask. You can also visit WeNourish.com, a website developed for you and your physician. Once you are on the site, click into the Patients and Caregivers tab for patient resources, education and support group information.

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• Join, or at the least become familiar with, The Oley Foundation. This a non-profit organization founded over 25 years ago that dedicates it services to improving the knowledge and quality of life of FCI consumers. They have a quarterly newsletter and an annual conference for FCI consumers. Everything they provide is at no cost to you. They may be reached at 800.776.OLEY (6539) or at www.oley.org.

• Realize that many consumers have been able to decrease their dependence on TPN. This is not always the case, but your dietitian and branch are dedicated to working with you and your doctor to achieve the best outcome for you. Be an active participant in your treatment process!

• Health insurance is, and has been, “the elephant in the living room” for FCI consumers. Private insurance, Medicare and Medicaid each have criteria for coverage of TPN and tube feeding therapy. Know what your insurance plan’s

requirements are for coverage. You can then best advocate for yourself in the case of therapy non-coverage. Many insurers no’s have become yes’s because a consumer knew their policy and coverage and advocated for themselves. Coram also has dedicated professionals that can and will be your resource for understanding issues that are unique to Medicare, Medicaid or your private commercial insurance when it comes to your therapy coverage.

• Consider being an advocate in a larger forum. I recently attended a legislative conference in Washington, DC. It is an annual event hosted by the Digestive Disease National Coalition (DDNC). This was the second year I attended, and I came away feeling that I had a voice in helping get the message to our Congressmen and Senators about the needs of FCI consumers. This forum is open for all FCI consumers, and this year the DDNC was able to reimburse consumers for travel costs.

As I write this article, President Obama has already signed into law the Health Care Reform Bill and some aspects of this bill are coming to fruition.. It is a time of exciting change and many unknowns, but it is also a time to arm yourself with knowledge about your therapy and your plan of care. With this knowledge, you can take an active part in reducing therapy-related complications, reducing your TPN dependence and enhancing your quality of life.

Please also remember, whether it is your lab draws, supply delivery, doctor’s appointments, attending a family reunion, taking a dream vacation or understanding your benefits, Coram is committed to you and your journey to celebrate life. t

Celebrate Life MagazineTo submit stories, comments, and suggestions for Celebrate Life, email:celebratelife@coramhc.com

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