Ashley Roberge, LCSW

A7: For little ones with SBS, creating a social story and engaging in medical play can help them adjust to the hospital environment and help them know what to expect during the visit. It can also help avoid the development of phobias/fears! #shortbowelsyndrome

A7: Frequent visits and hospitalizations can be particularly challenging for the SBS community due to medical trauma. Supporting patients/families in the weeks leading up to the visit can go a long way. #shortbowelsyndrome

A6: A top tip of mine is to remind patients and caregivers to take breaks from bedside if allowed! If OKed by your team, walk around the unit/hospital. You'll go mad staring at the 4 walls! #shortbowelsyndrome

A6: In thinking about the inpatient experience, hospital staff should consider the special aspects of an SBS patient's admission: all the teams involved, the amount of pokes they get, the fear of CVL care while admitted. SBS hospitalizations are very involved #shortbowelsyndrome

A6: Hospital staff should always be open to including the psychosocial team the hospital has to offer. Whether that's social work, psychology, or child life specialists - an SBS family can always benefit from psychosocial support #shortbowelsyndrome

A5: As providers, it's important to normalize that learning how to navigate TPN, g-tube feeds, etc., is part of the journey. Reminding caregivers and patients that they are doing the best they can is essential! #shortbowelsyndrome

A5: Coming home for the first time after a long admission with a new SBS baby can be stressful and anxiety-provoking! Tapping into an online community can be helpful to learn tips and tricks in caring for a kiddo! #shortbowelsyndrome

A5: Caregivers have shared how important having a community of other SBS caregivers in their corner is for their mental health. This is especially true for new caregivers of SBS patients. #shortbowelsyndrome

A4: Having to develop a routine around feeds can also be an adjustment. However, once it becomes a family and patient's "new normal," the timing becomes pretty seamless! #shortbowelsyndrome

A4: Keeping everything sterile! Many of my families are focused on maintaining a sterile environment while hooking a patient up to a IV nutrition. Avoiding line infections is an anxiety-producing goal. #shortbowelsyndrome

A3: Encouraging patients to connect with others who have ostomy bags can be very beneficial. Additionally, helping patients find a sense of empowerment can go a long way in terms of coping! #shortbowelsyndrome

A3: This can be a tough question! Adjusting to an ostomy can be challenging for some kiddos and will take time. It involves addressing insecurities and body-image. That doesn't mean it's not impossible! #shortbowelsyndrome

To help remedy the weight that an ostomy bag can cause and to help protect it, many patients utilize protective gear such as stealth belts! #shortbowelsyndrome

A psychosocial issue that patients & caregivers have recently reported to me is access to supplies. Based on your insurance, you're only allotted a specific amount per month. If you have repeat leaking, this can lead to out of pocket costs for supplies #shortbowelsyndrome