Management of Care

Finding a Gastroenterologist

The relationship between you and your healthcare provider is considered to be one of the most important aspects of your treatment. All patients with SBS must find a doctor that is a correct fit for their needs.  This process can vary from patient to patient, it is always a good idea to research and talk to others with the condition if possible.

• Information on doctors in some states is available on the internet at http://www.docboard.org.  This web site is run by Administrators in Medicine, a group of state medical board directors.

The American Board of Medical Specialties can tell you which doctors is board certified. “Certified” means that the physician has completed a training program in a specialty and has passed the exam, or “board”; to assess his or her knowledge, skills, and experience to provide quality patient care in their specialty.

• The ABMS web site is located at http://www.abms.org/. You can also contact ABMS by phone at:   1-866-275-2627.

Ask other doctors or healthcare professionals who work with doctors, such as hospital nurses, for referrals. If you or a family member see a primary care physician it would be wise to seek a referral from the Primary Care Physician, as he or she might know somebody in the field.

Call a hospitals doctor referral service, though keep in mind that these services usually refer you to doctors on staff at that particular hospital.  The services do not have information on the quality of care that these doctors provide.

Some local medical societies offer list of member doctors.  Again these lists do not have information on the quality of care that these doctors provide.

• The American Gastrointestinal Association has lookup directory for Gastroenterologists located at: https://secure.gastro.org/GILocator/locator.asp

Selecting Your Doctor

Once you have a list of prospective physicians, call each of their offices. Be sure to ask the following question:

• Does the practice accept your insurance plan?
• Insurance can be tricky since SBS is considered a catrostrophic condition.  If your plan is not accepted, are you willing to pay the extra fees out of your pocket?

During your first visit, you will have the opportunity to get to know your doctor, ask questions, and evaluate your doctor to find out if you feel comfortable with him or her.  Ask yourself the following questions when leaving your appointment.

• Was I given the chance to ask questions about Short Bowel Syndrome?
• Did my doctor really listen to my questions?
• Did the doctor talk in terms I understood?
• Have respect for me or my family member?
• Did the doctor ask me relevant questions pertinent to my condition?
• Made me feel comfortable?
• Addressed the health problem(s) I came with?
• Asked my preference about different kinds of treatments for SBS?
• Spent enough time with me?
• Made me feel confident about my treatment plan?

It is important to really trust your instincts when deciding if the doctor is right for you. Only you know you best, though take into consideration it takes time for a patient/doctor relationship to develop, it will take more than one visit for the both the patient and doctor to get to know each other and develop a trust and understanding towards each other.

Working with your Doctor

Patients who have good relationships with their doctors tend to be more satisfied with their care and have better result.  A good relationship with your doctor can turn into a partnership when it comes to treatment. Working together, bouncing new ideas off of each other, keeps the patient involved in the treatment process, and shows the doctor that you are truly interested in your well-being.

Some tips for establishing a partnership with your doctor:

• You know important things about your symptoms and your health history.  Tell your doctor what you think is important for him or her to know.  The doctor cannot help you without a though history.
• It is important to tell your doctor personal information, even if it will make you uncomfortable or embarrassed.  HIPPA was established to keep your information private between you and your healthcare provider.
• Bring a up-to-date health history, one that you keep current.
• Bring a current medication list with dosage and frequency information.  Talk about any allergies or reactions you have had to your medications.
• Tell your doctor about any natural or alternative medications you are taking.
• Bring previous diagnostic study results.
• Ask questions! If you do not ask questions, your doctor could assume that you understand everything that was said during the appointment.
• Write down questions before your visit; ask the most important questions first.
• Consider bringing a family member or friend to your appointment for support and also to help you remember to ask questions.
• Ask the doctor to draw pictures if you feel this will help you better understand
• Take information home. Ask for written instructions. Your doctor may have informational material for distribution that can be of assistance.
• After leaving your appointment, take responsibility for your care. If you have questions, be sure to contact your physician or the nurse.
• It is not a bad idea to obtain the email address of your provider or his/her Nurse.  In case if you have a quick question that may not be able to wait until another appointment.
• Join support groups online! Learn from others, become educated!

By following these steps you will enhance the relationship between you and your healthcare provider!

The Basics of Your Medications

The Agency of Health Care Research and Quality has published usefully guidelines on how you can best participate in the medication aspects of short bowel syndrome.  Taking medicines is not always as simple as swallowing a pill.  It can involve many steps and decisions each day. The AHCRQ recommends that patients with short bowel syndrome take part in treatment decisions. Don’t be afraid to ask questions early on, you may avoid concerns or problems later on.  Here are a few pointers to cover each time a new medicine is prescribed.

• Ask about all parts of your treatment, including diet changes, exercise, and medicines.
• Ask about the risks, and benefits of each medicine or other treatment you might receive
• Ask how often you or your doctor will check for side effects from a given medication

Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or doses to take each day.  You may care more about cost, or how the medicine will affect how you live or work. Some patients will request a certain medication based off news stories and their success rate, others because their provider feels it would be a good fit for their treatment plan.

Do not be afraid to “bother” your doctor with your concerns or questions about medications for short bowel syndrome.  You can also talk with your doctors’ nurse or a pharmacist. They can help you better understand your treatment plan.  Talking over options with a family member or friend  can help you make a better choice, especially if you are not feeling well.

Specifically ask your healthcare provider the following:

• The name of the medication and its use
• How and when to take the medication. How much to take, and for how long
• What food, drinks, and other medications or activities you should avoid while taking the new medication
• What side effects the medicine may have, and what to do if they occur
• If you can get it refilled, and if so, then how often
• Ask about anything you do not understand
• What to do if you miss a dose
• Ask for written information to take home

It is important to give your healthcare provider a list of all of your current medications, dose, and frequency taken (all drugs-including those not related to Short Bowel Syndrome).  This includes prescription and over the counter medication.  Your doctor can avoid getting you on a new medication that may not work well with the current medications you are currently on.  When preparing a list, be sure to include the following information:

• Name of medicine
• Reason taken
• Dosage
• Time(s) of day

Also include any over-the-counter medications, such as:

• Laxatives
• Diet pills
• Vitamins
• Cold/Flu Medication
• Aspirin or other pain, headache, or fever medicine
• Cough medicine
• Allergy relief
• Antacids
• Sleeping Aids
• Other medication (Include names, doses, and frequency)

A good resource to turn to that is both user-friendly and free to use is Pharmacopeia.  Pharmacopeia covers more than 9,000 prescription and over-the-counter medications.  To access this database simply click on the following link: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication, (such as brand names, category, description, preparation, proper use, precautions, side effects, etc.).  Simply follow the links indicated within the United States Pharmacopoeia (USP).  It is recommended that you read the disclaimer by the USP before using the information provided, https://www.nlm.nih.gov/medlineplus/disclaimers.html.

Short Bowel Syndrome Drugs & Information

Antibiotics

Antibiotics are used sparingly to prevent small-bowel bacterial overgrowth. They are used on a weekly to bi-weekly basis to prevent bacterial resistance.  Common agents are:

• Metronidazole (Flagyl)
• Gentamicin (Garamycin, Gentacidin)
• Vancomyocin (Vancocin)

H2 blockers

H2 blockers are used as one of two treatments modalities used for gastric and acid hypersecretion. Common H2 blockers are:

• Ranitidine (Zantac)

Proton pump inhibitors

Proton pump inhibitors are one of two treatment modalities used for gastric acid hypersecretion. Common Proton pump inhibitors are:

• Omeprazole (Prilosec)

Choleretic agents

Choleretic agents improve the billary flow and prevent total parenteral nutrition (TPN)-induced liver disease. Common Choleretic agents are:

• Ursodiol (Actigall, Urso)
• Phenobarbital (Barbita, Luminal, Solfoton)

Bile salt binders

Bile salt binders decrease choleretic diarrhea, common Bile salt binders are:

• Cholestyramine (Prevalite, Questran)

Antisecretin agents

Antisecretin agents aide in the process decreasing intestinal secretions, common Antisecretin agents are:

• Octreotide (Sandostatin)

Hypomotility Agents

Hypomotility agents help increase intestinal transit time, common Hypomotility agents are:

• Loperamide (Imodium, Kaopectate)

Contraindications and Interactions

Some of the medications mentioned in the previous discussions can be problematic for patients with short bowel syndrome-not because they are used in the treatment process, but because of contraindications, or side effects.  Medications with contraindications are those that could react with drugs used to treat short bowel syndrome or potentially create deleterious side effects in patients with short bowel syndrome. You should ask your physician about any contraindications, especially as they might apply to other medications that you may be taking for common ailments.

Drug-drug interactions occur when two or more drugs react with each other.  This drug-drug interaction may cause you to experience unexpected side effects. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you.

Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it is important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-the-counter and prescription medications, dietary supplements, vitamins, botanicals, minerals, and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.

A Final Warning about Medications

The Food and Drug Administration (FDA) warns patients to watch out for:

• Secret Formulas (real scientists share what they know)
• Amazing breakthroughs, or miracle cures (real breakthroughs don’t happen very often, when they do, real scientists don’t call them amazing or miracles).
• Quick, painless, or guaranteed cures
• If it sounds too good to be true, it probably is not true

The Food and Drug Administration is the official US agency charged with the discovery of which medications are likely to improve the health of patients of all medical conditions.  If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the yellow-pages of the phone book.  You can also contact the FDA through a toll-free number at 1-888-463-6332 or through their website at http://www.fda.gov.

Dietary and Nutrition Management

Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being.  Since then they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with short bowel syndrome.

Dietary recommendations are based on patient’s age, body mass index, gender, lifestyle, eating habits, food preferences, and overall health condition.  Therefore it is likely that different patients with short bowel syndrome may be given different recommendations. Some recommendations may be directly related to short bowel syndrome, while others may be more related to the patient’s general health.

These recommendations, themselves, may differ from what official sources recommend for the average person, in good health.  We will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of short bowel syndrome.

Food and Nutrition General Principles

The bowel consists of the small and large intestines. The small intestine absorbs food and fluids. It is about 15-20 feet long and is divided into three sections:

• Duodenum
• Jejunum
• Ileum

When a part of the small intestine is removed it can adapt overtime without having a major impact on your nutritional status, though it does take time for the remaining bowel to adapt.  How much time depends on how much small bowel was removed.

During this time you may experience:

• Gas
• Cramps
• Diarrhea
• Fluid Loss
• Weight Loss

Dietary Guidelines

• Eat Small & Frequent meals:
  Small meals will help control symptoms and result in better digestion and absorption
• Limit Fluid Intake during meals:
  Limit fluids during a meal to ¼ cup (4 ounces). Large volumes of fluid can push food through the bowel at a faster rate, resulting in inadequate digestion and absorption of nutrients.
• Include Beverages in Diet:
  Drink enough fluids to prevent dehydration. Drinking up to 8 glasses of water a day is a good way of meeting this goal. Drink fluids not high in sugar content, but more water, coffee, tea, milk, or diluted juices

Your meals should be…

High in Protein
High in refined carbohydrates
Moderate in Fat
Low in Concentrated Sweets
Low-Lactose if Lactose Intolerant
Low Fiber

Vitamins and minerals are fundamental to human health, growth, and in some cases, disease prevention.  Most are consumed in your diet (exceptions being Vitamins K and D which are produced by intestinal bacteria and sunlight on the skin).  Each vitamin and mineral plays a different role in health.

Vitamin A is important to the health your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

Vitamin B1, also know as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from nutrients; food sources for riboflavin include dairy products, leafy veggies, meat, and eggs.

Vitamin B3, also known as niacin, is important for health skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

Vitamin B6, also known as Pyridoxine, is important for regulation of cells in the nervous system. And is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

Vitamin B12 is vital for a health nervous system and for the growth of red blood cells in bone marrow.  Food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

Vitamin C allows the body’s immune system to fight various diseases, strengthen the body tissue, and improves the body’s use of iron, food sources for Vitamin C include a wide variety of fruits and vegetables.

Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.  Natural sunlight is also a great source of Vitamin D. Some studies have shown that tanning beds can be a good source of vitamin D from the ultraviolet lighting, though prolonged exposure is not recommended.

Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

WARNING:  IT SHOULD BE NOTED THAT ONE CAN OVERDOSE ON CERTAIN VITAMINS WHICH CAN BECOME TOXIC IF CONSUMED IN EXCESS…EXAMPLES OF SUCH VITAMINS ARE: VITAMINS A,D,E, and K.

Minerals

Like vitamins, they are chemicals that are required by the body to remain in good health.  The human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources.  The more important minerals include:

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.  Your family dentist can give you several recommendations for extra sources of fluoride intake if you have a deficiency.

Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources  for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

Phosphorous is used by the body to work with calcium to form bones and teeth food sources for phosphorous include eggs, meat, cereals, and dairy products.

Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

Zinc helps wounds heal, the formation of sperm, and encourages rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

YOUR RIGHTS AND RESPONSIBILITIES AS A PATIENT

Student Health staff members strongly believe that each person is entitled to certain rights as a patient. Additionally, each patient has certain responsibilities. Together, these ensure that each individual receives the appropriate medical care & personal services he/she deserves. The following Patient Bill of Rights and Responsibilities was established:

Each patient has the right to:

• Access to care & treatment regardless of race, creed, sex, national origin or religion
• Consideration & respect for personal dignity & privacy
• Expect that the diagnosis, prognosis & methods of treatment be explained clearly & in terms you can understand, including the risks & possible side effects
• Be informed about the Health Center regulations, policies, & rules governing the conduct as a patient.
• Know what alternatives exist for your care & treatment
• Know if treatment involves experimental, educational or research methods and maintain the right to refuse treatment to the extent permitted by law

Each patient has the responsibility to:

• Provide, to the best of his/her knowledge, accurate information relating to health matters
• Follow the treatment plan recommended by his/her primary health care provider
• Accept personal responsibility if he/she refuses treatment
• Know and abide by Student Health rules, regulations and policies
• Respect the rights of other patients, hospital personnel and others with whom he/she may come in contact