My contention is this: Medical professionals and, to some degree, people involved in ostomy groups interact far more with people who have difficulty adapting to life with an ostomy than with those who adapt well. I would go so far as to opine that the majority of people who have the surgery adapt well, have few problems, and do not interact with either the medical or ostomy communities, thus leading to the false perception that there are many more problems associated with the procedure than found in reality.
The term, "quality of life" is used in medical research to define a person's ability to participate in and enjoy their chosen activities of daily life. A quick search of "Medicine" (a catalogue of all medical publications), reveals over twice as many articles in the last ten years on "mastectomy" and "quality of life" than "ileostomy" and "quality of life." Moreover, the articles on ileostomy often compare the surgery only to people who have alternative procedures; i.e., pelvic pouch and not to the general populace.
This discrepancy is also found with regards to publications on colostomies and mastectomy, which is remarkable in that both are generally performed in the same age group and for cancer, albeit in a different anatomical location. Further investigations will reveal if this reflects a higher incidence and prevalence of breast cancer over colon cancer or if there is another explanation. Note: Colon cancer is the biggest cancer killer of non-smokers in the U.S. and has a higher incidence in the general population than breast cancer.
A recent publication in the "Journal of The Royal College of Surgeons of England", by Brennan and Steele, of Dundee, Scotland, entitled: "Objective Assessment of Quality of Life Following Pan-proctocolectomy and Ileostomy for Ulcerative Colitis", is some of the first research comparing the "quality of life" of people who have undergone ostomy surgery to that of the general public. While the fact that this study only examined people undergoing ileostomy for ulcerative colitis, limits its applicability to other ostomy surgeries, some extrapolation is possible.
The study compared forty-nine patients who had a permanent ileostomy for ulcerative colitis with population norms of similar age and gender in the UK. The study found that not only is "quality of life" good after surgery, but it is similar and in some ways, better than ... that's right, better than that of the general population. Patients with an ileostomy reported less body pain, more energy and vitality, and higher social functioning. This research finding stands in stark contrast to the attitudes I described having encountered in the medical and ostomy worlds.
I hope that this research spurs more and larger studies of this kind. Moreover, I would urge all people with ostomies to discuss with their surgeon and ostomy nurse if they are actively involved in ostomy research. The United Ostomy Association of Canada could be a significant resource for this research and would benefit from having better knowledge of the number and status of people with ostomies in the country.
Some Canadian surgical centers are already leaders in this area and others should be prompted to follow their example. While some may wish to view their ostomy with the attitude, "it is better than death", this report clearly demonstrates that a significant cohort of people undergoing ileostomy surgery have little or no negative impact due to their stomas.
I think the research underscores the importance of the ostomy association fulfilling its mandate of assisting people in adjusting to their ostomy. With this demonstration of the successful adaptation of a group with ileostomies, the importance of addressing the needs of those who are having difficulty in adapting, is reinforced. Clearly, research of the nature described here is critical to improving the lives of all people with ostomies.
