Helping someone manage SBS
As a caregiver for someone with Short Bowel Syndrome (SBS), you may be responsible for meal preparation, coordination of care or insurance claims, maintenance of equipment and emotional support. Being prepared and informed can create a more successful, experience for both of you.
Meeting nutritional needs
Because people with SBS are unable to absorb enough nutrients and fluids through a normal diet, they may receive nutrition through oral, enteral or parenteral delivery, or a combination of these methods. The treating doctor will recommend the right option based on individual needs. You can help by educating yourself on and assisting with the recommended treatment.
If your loved one is able to eat orally, an appropriate diet for people with SBS typically includes smaller, more frequent meals that are high in protein, moderate in fat and low in concentrated sweets. You may find a registered dietitian or certified nutrition support clinician to be a helpful partner in meal planning.
If your loved one will rely on enteral or parenteral nutrition at home, a nurse or a representative from your home care agency will recommend appropriate equipment and show you how to prepare and administer PN. Don’t be afraid to ask questions or request additional demonstrations if you are uncomfortable using the equipment.
Partnering with a care team
Establish a network of people you can trust, which may include the treating doctor and care team, dietitians, counselors, family and friends. Be an advocate for your loved one’s health and well-being, realizing that, a single resource may not provide all the answers you need. Use your newfound knowledge and passion to educate others.
You may be the primary point of contact for the health care team or be involved in health care decisions. If you need access to medical information in making health care decisions or when talking with insurance providers, you will need consent and access to personal information from your loved one.
Make a list of questions and concerns to be more proactive and concise when meeting with health care and support providers. If you have a lot to discuss, request a consultation appointment so the health care provider can schedule more time to speak with you. Ask what resources are available to you and your care recipient both inside and outside of the practice.
For a list of the Centers of Excellence in your area, contact the Oley Foundation or the Short Bowel Syndrome Foundation.
Maintain information for appointments and emergencies
Create and maintain a comprehensive file of information about the person you are caring for. It doesn’t have to be fancy; choose the system that works best for you. Make sure it provides easy access, can be efficiently updated, and shared as needed. It should include medical history, medication list, insurance information and legal documents. There are several online tools to help a caregiver stay organized.
In case of a medical emergency, keep a list of emergency contacts nearby at all times. Be prepared to explain your loved one’s condition to emergency personnel or healthcare providers. Know your loved one’s medications, doctors and insurance providers.
Plan well in advance if your loved one will be away from home for a long period of time or taking a trip.
Talking to insurance providers about claims
You can assertively handle insurance claims by being well prepared. Before the call, gather all your information. You will need to provide your loved one’s name, the nature of your relationship, his or her date of birth, the insurance policy number, the name of the medical organization that sent the bill, the amount of the bill, the diagnosis code, and an explanation of the benefits.
During the call, state your specific question or concern and what information or help you need. Ask for the insurance representative’s full name and extension number so you can potentially speak with the same person if you need to call again. Take good notes, including the date of the call and what was discussed.
The Oley Foundation has compiled a list with links to a variety of resources for insurance, disability and prescription information if you would like to research these topics further. The Oley Foundation does not endorse or take responsibility for the information on these websites.
Participating in activities
People living with Short Bowel Syndrome often face challenges participating in activities they previously enjoyed. You can help your loved one by being well prepared for dining out or traveling, arranging an alternative outing, or simply taking the time to listen.
From a practical standpoint, before leaving home confirm a restroom will be near your destination. Carry a bag or keep a kit in your car of extra supplies, which may include urinal, toilet paper, disposable pads to sit on, extra underwear and clothing. The Short Bowel Syndrome Foundation offers Restroom Cards with a medical alert about SBS and the need for immediate restroom access.
Providing emotional support
Emotional support can be just as important as the physical support you’ll provide to someone with SBS. Living with SBS oftentimes requires adjustments in sleeping, bathing and dressing. It is normal for a major health or life change to cause feelings of frustration, depression, anxiety, anger or guilt. Consider seeking professional help, such as counseling, for your loved one when needed. You and your loved one may appreciate the support of online communities for those living with rare diseases.
You can access or participate in forums through Inspire and The Oley Foundation, an organization that provides information and support to people who rely on enteral or parenteral nutrition. Keep in mind that an online forum should not take the place of medical advice.
Caregivers often put the needs of their loved ones ahead of their own physical and emotional health, which can be detrimental over the long term. Find tips on caring for yourself here.
Personal care for someone living with SBS
To avoid discomfort or infection when living with Short Bowel Syndrome or relying on supplemental feeding, The Oley Foundation suggests placing a high importance on personal care and proper maintenance of equipment. The website offers tips for dealing with skin and stoma issues as a result of IV and tube feedings, finding products, and maintaining equipment.
Find resources in your area
Services and organizations in your local community may be able to offer specific help or refer you to the assistance you need. Consider calling or accessing these local governmental agencies online: the Health and Human Services Department, Social Service Department, Public Health Department, Social Security Administration and Medical Board. Locate or start a local chapter of relevant disease groups by searching and connecting with them through The National Organization for Rare Disorders (NORD). For additional help and resources, ask your doctor’s office or research faith-based organizations, hospital-affiliated organizations and health clinics, and community-based organizations.
Caring from a distance
If your loved one lives alone or far from you, you may consider hiring in-home care. As a first step, the treating physician’s office or the hospital’s discharge planner should be able to assess your needs and refer you to reputable local resources that specialize in care for people with gastrointestinal disorders. Considerations include quality and clinical expertise for your loved one’s condition, insurance coverage, geographical service area, and supplies provided. AARP, Inc. provides an additional perspective on choosing a home care agency.