Intestinal Failure Support
Living with intestinal failure can be challenging both physically and emotionally. Finding support is important for several reasons:
- Emotional Well-being: Coping with a chronic condition like intestinal failure can take a toll on mental health. Having a support system can provide emotional support, understanding, and a sense of connection. Sharing experiences with others who are going through similar challenges can reduce feelings of isolation.
- Practical Advice: People with intestinal failure often face complex dietary restrictions, medical treatments, and lifestyle adjustments. Support from others who have dealt with similar situations can offer practical advice on managing symptoms, navigating the healthcare system, and making necessary lifestyle changes.
- Education and Information: Understanding intestinal failure, its causes, and available treatments is crucial. Support groups and networks can provide valuable information, resources, and access to experts who can help individuals and their caregivers make informed decisions about their healthcare.
- Advocacy and Empowerment: Support systems can empower individuals with intestinal failure to advocate for themselves and others. Being part of a community that shares common goals can amplify the collective voice in raising awareness, influencing healthcare policies, and improving access to resources.
- Reducing Stigma: Living with a condition like intestinal failure may be accompanied by stigma or misunderstanding. Support groups can create a safe space where individuals can share their experiences without judgment, fostering a sense of acceptance and understanding.
- Quality of Life: The challenges associated with intestinal failure can impact the overall quality of life. Emotional support and practical assistance from a network of friends, family, or fellow patients can contribute to a better quality of life by easing the burden of daily tasks and providing encouragement.
- Motivation and Inspiration: Seeing others successfully manage and cope with intestinal failure can be motivating and inspiring. Sharing success stories and strategies for overcoming challenges within a supportive community can instill hope and a positive outlook.
In summary, finding support when living with intestinal failure is important for emotional well-being, practical advice, education, advocacy, reducing stigma, improving quality of life, and gaining motivation from shared experiences.
Intestinal Related Organizations & Support
- The Short Bowel Syndrome Foundation, Inc.
- leading non-profit dedicated to the support, education and advocacy of individuals living with short bowel syndrome. Empowering them to live a better life with SBS.
- Short Gut Families’ Support Group
- The Short Gut Syndrome Family Support Group is a leading support group for Short Bowel Syndrome. The conversation focuses on providing both emotional and practical support to patients, parents, and families.
- The Global Gastroschisis Foundation
- Non-profit charitable organization and support organization devoted to support, research and awareness of gastroschisis. Their support organization is known as Avery’s Angels in the past.
- The Gutsy Perspective
- A Patient and family driven research and awareness for patients with Short Bowel Syndrome and their families.
- NEC Society
- Non-profit organization dedicated to research, education and advocacy focused on necrotizing enterocolitis (NEC).
- The Oley Foundation
- The leading organization for support and education for home parenteral and enteral nutrition. Hosts an annual national conference as well as regional conferences.
- Transplant Unwrapped
- Non-profit organization dedicated to support of patients and families with intestinal failure through intestinal rehabilitation and/or intestinal or multivisceral transplant.
- United Ostomy Associations of America, Inc., an organization that promotes quality of life for people with ostomies.
- American Society for Parenteral and Enteral Nutrition (ASPEN)
- ASPEN is the leading parenteral, and enteral clinical nutrition organization
- Short Bowel Support
- A website from Takeda pharmaceuticals provides a very simple and brief overview of Short Bowel Syndrome. Here you can get “The Patients Guide To Short Bowel Syndrome“
- National Organization of Rare Disorders
- a nonprofit organization that advocates for patients and families affected by rare diseases