Ashley Roberge, LCSW

Our goal is to build a community of clinicians and mental health professionals to support patients with #ShortBowelSyndrome to build a community of practice #shortgut #mentalhealth

Thank you for joining the #ShortBowelSyndrome Twitter Chat today! @JessicaYAllen @shannonchangmd @SwapnaSpeaks @AshleyRoberge3 @MicheleRubin16 @DrJStellway #shortgut

Thanks again to @IFFGD @IBDgirls @OleyFoundation for helping us with our #ShortBowelSyndrome Twitter Chat today!

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: Again I will say that establishing a support system is key! Individuals who are open and share their needs with friends/family are able to obtain more support both with actions and emotional support. #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

@JessicaYAllen The amount of stress and anxiety patient/caregivers have faced during these shortages is mind blowing! People lose trust in companies and that's understandable.

A4: Concerns about access to enteral nutrition and iv nutrition (whether due to travel, shortages, recalls, damaged shipments, etc…) can be highly distressing. suppliers & providers should have a plan and communicate next steps #ShortBowelSyndrome

A4: 🔷Concerns re infections & loosing access to IV nutrition & self-blame when these events occur. 🔷 provide ongoing feedback and education resources to best-practices for IV nutrition. #ShortBowelSyndrome

A special thanks and shout out to @IFFGD @IBDgirls @oleyfoundation for helping their followers know about our #ShortBowelSyndrome Twitter Chat today!

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

@DrJStellway Recently I've seen patients utilize small bags and fanny packs! #shortbowelsyndrome

A2: I work with teens, so my experiences and examples are with this kiddos. Teens often worry about dating, dances, swimming and sports. Finding cool ostomy supplies can be very empowering! #shortbowelsyndrome