I started my career as a surgical ICU and flight nurse providing care to the critically ill both on the ground and in the air. Flash forward 34 years, I now am the complex abdomen specialist at Regions Hospital, which is a Level I Trauma Center in St. Paul, Minnesota. As a wound and ostomy certified nurse, I specialize in complex abdominal wall injuries and enteric fistulas. I often see patients with abdominal disasters that require many levels of support including diverting ostomies and total parenteral nutrition (TPN).
A rare and serious condition called Short Bowel Syndrome (SBS) occurs in patients when part of their intestines are surgically removed or injured, and the remaining intestine may not be able to absorb enough nutrients from food and drink.
In my experience, SBS doesn’t impact life early on in a trauma patient’s world while in the ICU. At that time, they often have little to no output of fecal matter because the body is working overtime to support the heart, lungs, brain, etc. Patients’ memories of the hospitalization usually begin once they reach our general care floor, which is when they start to mobilize, eat, and drink.
All this happening simultaneously with a patient awaking to learn that they now have an ostomy can often feel overwhelming to a patient and the family or friends who care for them. Patients and family caregivers may experience grief at the realization that they now have a temporary or irreversible ostomy. The emotional adjustment can take time. And since management of the ostomy and pouch is frequently paired with that of other injuries sustained by the patient, education is incredibly significant at this stage.
At our hospital, we have a stepwise program that involves the entire facility care team – dieticians, surgical staff, bedside nurses, patient care assistants, and other allied health professionals. We start by explaining what is happening with the patient’s body and why it requires management: SBS puts patients at risk for malnutrition, electrolyte disturbances, dehydration, and increased ostomy output. Additionally, patients and family caregivers often go through the stages of grief while mourning the loss of what they consider to be a normal lifestyle. Patient and caregiver education is incredibly significant at this stage.
When it comes to SBS, I often quote nutrition support specialist, Carol Parrish, MS, RDN, “It’s not the length of the bowel, it’s the functionality.” In my opinion, following Ms. Parrish’s handbook for SBS is beneficial to the patient. You can’t prepare a patient for what comes with an SBS diagnosis, and no two situations are the same. When possible, we try to eliminate the need for long-term TPN for our patients and move toward management of SBS through strict meal planning and medication.
Weaning off TPN is a process that takes time, patience and commitment from patients and caregivers. It is important to educate and re-educate the care teams on medication choices and food and drink choices. I’ve seen great success from patients and caregivers that are diligent in tracking how certain food and drink affect them beyond their stay in the hospital.
SBS is a rare condition that is still not widely recognized in the medical community. More education for providers and access to care for patients is essential. Teamwork is key in managing the changes and challenges that come with an SBS diagnosis. There are resources available to help patients and caregivers as they navigate the journey with SBS and seek support.
Mary Anne Obst RN, BSN, CCRN, CWON, CWS is a complex abdomen specialist at Regions Hospital in St. Paul, Minnesota.
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