Living With a Parastomal Bulge - a Phenomenological-hermeneutic Study of Patients Lived Experiences
Living With a Parastomal Bulge - a Phenomenological-hermeneutic Study of Patients Lived Experiences
A parastomal bulge (PB) is a frequent long-term complication after stoma formation. Most
 parastomal bulging occurs within two years of stoma formation but is seen up to 20 years
 post-surgery. A bulge may be relatively obvious or extremely difficult to diagnose, and
 descriptions of symptoms vary from 'asymptomatic', 'symptomatic' to 'high symptom load'.
 Previous studies report that quality of life as well as physical, psychological and social
 function are affected in patients with parastomal bulging. However, there is a lack of
 knowledge of patients' lived experiences with parastomal bulging. Insight into patients'
 experiences of symptoms in relation to parastomal bulging and the impact on everyday life may
 help identify issues of importance from the patient perspective. This, in turn, may help
 professionals to better understand and support patients with PB, and be of help when
 identifying patients' symptoms and determining relevant treatment strategies.
Stoma formation is a commonly performed procedure in colorectal surgery as part of treatment
 for malignant- and inflammatory bowel disease. A parastomal bulge (PB) is a frequent
 long-term complication with an incidence varying from 4% to more than 40% depending on ostomy
 type, follow-up and definitions.

 A bulge may be relatively obvious or extremely difficult to diagnose. Most parastomal bulging
 occurs within two years of stoma formation but is seen up to 20 years post-surgery. Despite
 advances in primary surgical and repair techniques a rising incidence of parastomal bulging
 is expected in the future due to increased survival of cancer patients with an ostomy and
 limited dissemination of new techniques. Approximately one in three patients with a
 parastomal hernia requires a surgical hernia repair. However, the majority of patients are
 referred to non-surgical treatment by the enterostomal therapist in the outpatient clinic or
 do not seek professional help to manage the bulge. Previous studies report that quality of
 life as well as physical, psychological and social function are affected in patients with
 parastomal bulging.

 Descriptions of symptoms vary from 'asymptomatic', 'symptomatic' to 'high symptom load'. Most
 frequently reported symptoms include ostomy leakage, skin problems, difficulty with ostomy
 appliance, limitation of activity, difficulty with clothing, cosmetic complaints, social
 restriction, erratic action of the stoma and a bearing down sensation at the site of the
 stoma. Rare, but serious complications include complete obstruction, strangulation or
 incarceration. However, there is a lack of knowledge of patients' lived experiences with
 parastomal bulging. Insight into patients' experiences of symptoms in relation to parastomal
 bulging and the impact on everyday life may help identify issues of importance from the
 patient perspective. This, in turn, may help professionals to better understand and support
 patients with PB, and be of help when identifying patients' symptoms and determining relevant
 treatment strategies.

 Purpose: The aim is to study stoma patients experiences of parastomal bulging and symptoms in
 everyday life (in relation to an ileostomy and colostomy)
Inclusion Criteria:

 Permanent or temporary active sigmoidostomy, transversostomy, jejunostomy or ileostomy

 PB diagnosed by stoma care nurse

 Ability to speak and understand Danish

 Exclusion Criteria:

 Previous surgical repair for PB

 Major incisional abdominal hernias