Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs

Background Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. Methods We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. Results We interviewed 16 patients ranging in age from 28 to 68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. Conclusions Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones.

Ileostomy or Ileal Pouch-anal Anastomosis for Ulcerative Colitis: Patient Participation and Decisional Needs.

Background: Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. Methods: We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. Results: We interviewed 16 patients ranging in age from 28-68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. Conclusions: Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones.

A RARE ASSOCIATION OF CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY WITH ULCERATIVE COLITIS

Chronic inammatory demyelinating polyneuropathy (CIDP) is a rare complication of Ulcerative colitis and it is uncertain whether it is associated with Ulcerative colitis itself or with its treatment. We describe a case of CIDP-like neuropathy as an initial symptom of Ulcerative colitis. A 17 years old male patient presented with symmetrical weakness of both lower extremities with paresthesia of both hand and feet. With impression of AIDP patient was treated with plasmapheresis and discharged on tapering steroid therapy. After 3 months again presented with bilateral weakness of all four limbs associated with diarrhea and fever. Patient was diagnosed with Ulcerative colitis ,so considering previous episode as 1st episode of CIDP and with rare association with Ulcerative colitis . Patient was treated with high dose of steroids and immunosuppressive therapy. Neurological and gastrointestinal symptoms remarkably improved after treatment.