Living with SBS: A Patient Story
Narrator: For many with short bowel syndrome who are dependent on parenteral support, like Jenny, the burdens of their condition may impact all facets of life diminishing their dignity and self-esteem.
Jenny: Short bowel syndrome has made everyday life very difficult. I miss how easy it was when I didn’t have to constantly think about what I’m eating or what I’m drinking. It’s tough for me to stick to plans like birthday parties or family get-togethers. It’s been challenging to fight for good quality of life.
Narrator: The uncertainty of short bowel syndrome (SBS) and its management may have a negative effect on the lives of your patients.
The UNCERTAINTY of SBS and its management may have
a negative impact on patients’ mental health2
Patients with SBS report a range of emotions associated with their condition2:
- Shock from initial diagnosis
- Fear and uncertainty about the future
- Anxiety over physical changes or medical interventions
Treatment and dependence on PS can lead to a variety of challenges for patients3:
- Stress from long daily infusions
- Worry over life-threatening complications
- Concern for constant symptom monitoring
- Difficulty with body image issues
SBS may cause feelings of
loneliness DUE TO the inability
to act spontaneously2
Some patients report2:
Patients may struggle to convey the extent of the impact of SBS on their daily lives. Start a conversation with your patient to establish an individual approach that matches their specific needs2,4
REFERENCES —
1. Carlsson E, Bosaeus I, Nordgren S. Quality of life and concerns in patients with short bowel syndrome. Clin Nutr. 2003;22(5):445-452. doi:10.1016/s0261-5614(03)00042-6
2. Data on file. SBS patient insights program: digital ethnography study report. Trinity, LLC. August 16, 2023.
3. Winkler MF, Smith CE. Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome. JPEN J Parenter Enteral Nutr. 2014;38(suppl 1):32S-37S. doi:10.1177/0148607113517717
4. Bielawska B, Allard JP. Parenteral nutrition and intestinal failure. Nutrients. 2017;9(5):466. 2017. doi:10.3390/nu9050466
