OPEN Research Support

Chief surgeon, Clinical Lector, PhD
Mark Bremholm Ellebæk
The Surgical Department A, Odense University Hospital

Projekt styring
Projekt status    Open
Data indsamlingsdatoer
Start 01.09.2021  
Slut 31.08.2023  

Paediatric patients with ulcerative colitis undergoing J-pouch ileoanal anastomosis; postoperative complications and long-term functional outcomes. A retrospective study in the Nordic countries. PIPAA Nordic Study.

Short summary

The aim of this study is to establish a database that can be used to understand the risks and long-term outcomes of the J-pouch operation for children with Ulcerative Colitis (UC) in the Nordic countries.

This will be crucial for advising parents and children, that in the future need surgery for chronic inflammatory bowel disease. This is important as we expect an increase in the number of children diagnosed with chronic inflammatory bowel disease and must be operated on.


Ulcerative Colitis (UC) is an inflammatory bowel disease that can affect patients in all ages. Surgery is often required for patients affected by ulcerative colitis, despite the progress of medical therapy (1). The most common preferred surgery is proctocolectomy with ileal pouch anal anastomosis (IPAA). The aim of the surgery is to preserve the normal route of defecation (2).

There are three types of pouches that can be used in such an operation, J-pouch, W-pouch and S-pouch. The most common one used today is the J-pouch (2-5) with or without a protective diverting ileostomy to reduce the consequences of an eventual anastomotic leak. Ileostomy takedown is usually done 3 months after (4; 6).

Complications after surgery are classified as acute and chronic. The most common acute complications include pouch leakage, wound infection, pelvic sepsis and ileus. The chronic complications include pouchitis, pouch failure, small bowel obstruction, fistula formation, stenosis and incontinence. Significant surgical complications in paediatric populations have an reported incidence between 13%-51% (8). Pouchitis is the most common chronic complication and with a reported incidence (19%-62%) (7).

When assessing the functional outcomes after surgery bowel movements per 24-hours, and continence are the most common parameter reported, but other functional devastating problems such as imperative complaints defecation are underreported. Studies on functional outcomes in paediatric patients undergoing IPAA remain sparse special with reference to pouch-failure in the long-term rune (9). In adults newly published results from Denmark indicate a much higher ration for pouch failure (10).

Description of the cohort

The study design will be retrospective, and the population will consist of paediatric patients with ulcerative colitis that have undergone a J-pouch ileoanal anastomosis operation in a 20 year period from the 1st of January 2000 to the 31st of December 2020. All departments of paediatric surgery in the Nordic countries will be invited to participate in the study.


Children under the age of 18 years old with ulcerative colitis having a J-pouch ileoanal anastomosis. Patients will be grouped after age; 0-10 years old and 11-18 years old.


Children that have had other pouch procedures, such as S- and W-pouch, and children with Familial Adenomatous Polyposis (FAP).

Data and biological material

The data from the participating countries will be collected by retrospective medical records review.

Collaborating researchers and departments

Department of Pediatric Surgery, Lund University Hospital

  • Pernilla Stenström

Department of Pediatric Surgery, Helsinki University Hospital

  • Mikko Pakarinen

Department of Pediatric Surgery, Karolinska Institutet

  • Tomas Wester

Department of Pediatric Surgery, The Queen Silvia Children's Hospital Gothenburg

  • Cathrine Gatzinsky

Department of Pediatric Surgery, Hvidovre Hospital

  • Kjetil Stenstrud

Departement of Pediatric Surgery, Oslo University Hospital

  • Kristin Bjørnland

Publications associated with the project

1. Foundation's CsC. 2018. Surgery for Crohn's Disease & Ulcerative Colitis.

2. Gawad N, El Demellawy D, Wayne C, Bass J, Nasr A. 2016. Histologic inflammatory activity of the rectal margin as a predictor of postoperative complication in ileoanal anastomosis (J-pouch) procedure in children with refractory ulcerative colitis. Journal of Pediatric Surgery 51:783-5

3. Durno C, Sherman P, Harris K, Smith C, Dupuis A, et al. 1998. Outcome after ileoanal anastomosis in pediatric patients with ulcerative colitis. Journal of Pediatric Gastroenterology and Nutrition 27:501-7

4. Dolgin SE, Shlasko E, Gorfine S, Benkov K, Leleiko N. 1999. Restorative proctocolectomy in children with ulcerative colitis utilizing rectal mucosectomy with or without diverting ileostomy. Journal of Pediatric Surgery 34:837-40

5. Malik BA, Gibbons K, Spady D, Lees G, Otley A, Huynh HQ. 2013. Health-related quality of life in pediatric ulcerative colitis patients on conventional medical treatment compared to those after restorative proctocolectomy. International Journal of Colorectal Disease 28:325-33

6. Gray BW, Drongowski RA, Hirschl RB, Geiger JD. 2012. Restorative proctocolectomy without diverting ileostomy in children with ulcerative colitis. Journal of Pediatric Surgery 47:204-8

7. Hirata A, Uchino M, Bando T, Hirose K, Chohno T, et al. 2016. Long-term outcomes and sex differences after restorative proctocolectomy in pediatric patients with ulcerative colitis. Journal of Pediatric Surgery 51:454-60

8. Koivusalo A, Pakarinen MP, Rintala RJ. 2007. Surgical complications in relation to functional outcomes after ileoanal anastomosis in pediatric patients with ulcerative colitis. Journal of Pediatric Surgery 42:290-5

9. Lightner A, Alsughayer A, Wang Z, et al. 2019. Short- and long-term outcomes after ileal pouch anal anastomosis in pediatric patients: a systematic review. Inflammatory Bowel Diseases 25(7):1152-68

10. Mark-Christensen A, Erichsen R, Brandsborg S, et al. 2018. Pouch failures following ileal-pouch anal anastomosis for ulcerative colitis. Colorectal Disease 20(1):44-52