Should I have IBD surgery?

If medicines just don’t seem to help your IBD symptoms, your doctor may recommend surgery. This tool will help you understand your choices and think about what matters most to you.

Disclaimer: This tool is for general information only and does not constitute medical advice. For more specific information, please talk to your child’s doctor.

We know that surgery is a big decision

We want to help you sort through what you know, what you need to know, and how you feel so that you can take an active role in deciding what is best for you.

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This tool is intended for use by teens and young adults with moderate to severe IBD whose doctor thinks that surgery might help, but for whom surgery is not the only option. You should use this tool with support from your doctor, your care team, and family or friends who are helping you make medical decisions. It will help you understand your choices and help you think about what matters most to you.

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At the end, you will have the option to download or print a PDF summary of your responses. You can share this with your doctor, your family, your counselor, and anyone else who is helping you make this decision. The information that you provide is not saved after you close the browser.

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A team of patients, parents, doctors, psychologists, and nurses from Dayton Children's created this tool using a Patient and Parent Innovation Grant from ImproveCareNow. We know surgery is a big decision. We want to help you sort through what you know, what you need to know, and how you feel. We’ve also added some links to good sources of information.

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  1. Pfefferkorn MD, Marshalleck FE, Saeed SA, et al. NASPGHAN Clinical Report on the Evaluation and Treatment of Pediatric Patients With Internal Penetrating Crohn Disease: Intraabdominal Abscess With and Without Fistula. J Pediatr Gastroenterol Nutr 2013;57:394-400.
  2. Patton D, Gupta N, Wojcicki JM, et al. Postoperative outcome of colectomy for pediatric patients with ulcerative colitis. J Pediatr Gastroenterol Nutr 2010;51:151-154.
  3. Fahy AS, Potter DD, Ravi A, et al. Colectomy in refractory Crohn’s colitis improves nutrition and reduces steroid use. J Pediatr Surg 2017;52:1769-1775.
  4. Gray BW, Drongowski RA, Hirschl RB, et al. Restorative proctocolectomy without diverting ileostomy in children with ulcerative colitis. January 2012:204-208.
  5. Amil-Dias J, Kolacek S, Turner D, et al. Surgical Management of Crohn Disease in Children: Guidelines From the Paediatric IBD Porto Group of ESPGHAN. J Pediatr Gastroenterol Nutr 2017;64:818-835.
  6. Splawski JB, Pffefferkorn MD, Schaefer ME, et al. NASPGHAN Clinical Report on Postoperative Recurrence in Pediatric Crohn Disease: J Pediatr Gastroenterol Nutr 2017;65:475-486.
  7. McKenna NP, Mathis KL, Khasawneh MA, et al. Obese Patients Undergoing Ileal Pouch–Anal Anastomosis: Short- and Long-term Surgical Outcomes. Inflamm Bowel Dis August 2017:1.
  8. Healy MA, Regenbogen SE, Kanters AE, et al. Surgeon Variation in Complications With Minimally Invasive and Open Colectomy: Results From the Michigan Surgical Quality Collaborative. JAMA Surg June 2017.
  9. Dharmaraj R, Dasgupta M, Simpson P, et al. Predictors of Pouchitis After Ileal Pouch-Anal Anastomosis in Children: J Pediatr Gastroenterol Nutr May 2016:1.
  10. Maxwell EC, Dawany N, Baldassano RN, et al. Diverting Ileostomy for the Treatment of Severe, Refractory, Pediatric Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2017;65:299-305.
  11. Prato AP, Pio L, Leonelli L, et al. Morbidity and Risk Factors of Laparoscopic Assisted Ileostomies in Children with Ulcerative Colitis: J Pediatr Gastroenterol Nutr October 2015:1.
  12. Bismar N, Knod JL, Patel AS, et al. Outcomes following two-stage surgical approaches in the treatment of pediatric ulcerative colitis. J Pediatr Surg October 2018.
  13. Soldes OS. Ileostomy and Colostomy. In: Mattei P, Nichol PF, Rollins, II MD, et al., eds. Fundamentals of Pediatric Surgery. Cham: Springer International Publishing, 2017:479-485. http://link.springer.com/10.1007/978-3-319-27443-0_58. Accessed January 4, 2019.
  14. Börjesson L, Lundstam U, Öresland T, et al. The place for colectomy and ileorectal anastomosis: a valid surgical option for ulcerative colitis? Tech Coloproctology 2006;10:237-241.
  15. Choi CS, Berg AS, Sangster W, et al. Combined Medical and Surgical Approach Improves Healing of Septic Perianal Crohn’s Disease. J Am Coll Surg 2016;223:506-514.e1.

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