by Marianne Krogsgaard, Clinical Nurse Specialist, Department of Surgery, Zealand University Hospital
During surgery for cancer or other abdominal illness, it is sometimes necessary to form a stoma (an ileostomy or a colostomy). Having a stoma means that the bowel can empty solid waste (stool) and gas in a bag worn on the outside of the body. A parastomal bulge is a complication that can occur months or years after stoma formation in more than half of the patients. The bulge is a swelling next to the stoma whereby abdominal contents protrude underneath the skin. So far, little is known about how patients experience living with the bulge and we have only limited knowledge on the number of patients undergoing surgical repair for a parastomal bulge.
From 2017 to 2019, we did three studies investigating patients’ experiences of symptoms (I), Health-related Quality of Life (HRQoL) (II) and the course of surgical treatment (III).
In study I, patients described that the bulge could be stable or changeable or increase twofold in only a few months. As the size of the bulge increased, the stoma also changed size and shape, and transformed stoma care from being relative simple to increasingly difficult. Some felt they lost control of the stoma. Easy access to the stoma care nurse was thus very important to the patients to regain control. Patients described a variety of unfamiliar and unpleasant sensations that interfered with everyday life. Some patients described a fluctuating bearing-down sensation when walking or sitting. Others described difficult stool passage, noisy flatulence or pain due to stretch of the skin. Some patients experienced a feeling of heaviness, especially at the end of the day.
Patients described how the parastomal bulge deformed their bodies. To cover the asymmetry patients wore loose clothing or had their trousers tailor-made. Others wore a garment to conceal the bulge.
In study II, 1265 patients responded to a survey, and 693 (55%) of these reported having a parastomal bulge. We assessed HRQoL using SF-36 (generic) and the Stoma-QOL questionnaire. Patients with a bulge had significantly impaired quality of life across all stoma specific and generic health domains compared to patients without a parastomal bulge. In patients with an ileostomy or patients having an underlying benign diagnosis, the bulge impacted negatively on their Social Functioning and Mental Health when compared to patients with a colostomy or cancer. Patients with a large bulge >10 cm had worse scores for all stoma specific and generic health domains when compared to a small < 10cm. There was no difference in the impact on quality of life over time, suggesting a long-term impairment.
In the third study (III) we included patients diagnosed with a parastomal bulge by clinical examination within 1 year of stoma formation. We found that the probability of undergoing surgical repair was 9% within 1 year and 19% within 5 years after the occurrence of a parastomal bulge. Having already undergone a repair, the probability of having a recurrent repair was 33% within 5 years of patients’ first repair.
So overall, from this research we concluded that patients experience difficulties living with a parastomal bulge. The proportion of patients undergoing surgery is relatively low, indicating that most patients have to live with the parastomal bulge getting help from the stoma care nurse or other professionals or maybe handling the bulge on their own.
We know that some patients are unaware of the help that is provided by stoma care nurses, but even years after stoma formation it is possible to contact a Stoma Care Nurse for help with e.g. a parastomal bulge.
For future studies, we plan to investigate how patients learn to live with the bulge so that we can inform and help future patients to understand and manage their situation. Furthermore, we will look into the effect of garments in reducing symptoms and disguising the bulge.