Ulcerative Colitis: Dead or Alive?

Alive, we hope!A new study shows that UC patients who have their colons removed are less likely to die than patients who chose medicine instead. An editorial published with the article says this means physicians should focus on saving lives, not saving colons. But some patients already feel surgery is wrongly considered a ‘cure’, when they still face significant issues afterwards.

The study*, published in the Annals of Internal Medicine, looked at data from the (US) Medicare and Medicaid programs. It covered 830 patients who had their colons removed, and compared them to 7,541 patients who only took medicine for their disease. There were 34 deaths per 1000 person-years in the surgery group, compared to 54 per 1000 person-years.

However, the study did have some problems — most importantly, statistical analysis showed that the difference in death rates was only significant for patients over 50. The study also had no patients on private insurance, so focused instead on older and poorer patients. It also did not look at quality of life — only whether the patient lived or died.

Nonetheless, in the editorial published with the study, Dr. David Sachar argues that the study should make physicians rethink their ideas about success in treating UC:

Too often, we reflexively assume that the touchstone of therapeutic success is “sparing” or “salvaging” the patient from surgery. […] This study demonstrates that simply keeping a patient’s colon intact is not a sufficient long-term measure of therapeutic “success”.

Dr. Sachar also seems to dismiss the idea that quality of life is a useful measure of success:

There are a plethora of “quality-of-life” assays, including quantitative methods that allow one to calculate health-related quality of life. […] Such indices inevitably incorporate a level of subjectivity or value judgment, but there is little subjectivity when the measurement is binary: dead or alive.

If only medicine were that easy. Unfortunately, Dr. Sachar seems to be swimming upstream against an increasing concern among physicians that “dead or alive” is not the only or most useful measure of successful treatment. For example, Dr. Atul Gawande’s recent book, Being Mortal, has helped spur a national conversation about whether simply keeping old people alive is a good measure of success for geriatric medicine.

In the IBD community, there is a growing unease among UC patients with the idea that surgery ‘cures’ the disease. Journaling IBD blogger Marisa Lauren Troy has been one of the most vocal critics of the surgery ‘cure’:

The best case scenario in an ulcerative colitis patient is they have their colon removed and have an extremely successful Jpouch surgery. And even that has issues of its own. A person runs the risk of pouchitis  (which can seem like having a flare up of UC in many ways), deals with frequent trips to the restroom, dehydration, blockages, etc. This best case scenario is also usually done in three steps/separate surgeries, where the patient needs to wear a temporary ileostomy bag for a number of months.

Marisa points out that she was not a best case scenario, and now has a permanent ileostomy. In her view, quality of life is a crucial issue in the decision whether to have surgery or not:

[…] when you say the cure for ulcerative colitis is removing the colon, it sends the wrong message. It says to people who do not have inflammatory bowel disease and who are trying to become more educated that those of us who have had their large intestines removed are now living life as normally as they did prior to being diagnosed. And that is simply not true.

Along similar lines, here is Rasheed Clarke, another UC patient who underwent colectomy:

A cure would allow UC patients to return to the lifestyles they enjoyed before the onset of the disease. Surgery does neither. Instead it creates a new lifestyle that remains fraught with risks and potential complications.

Granted, Dr. Sachar does not suggest that surgery is a cure for ulcerative colitis — only that it is a better treatment than medical alternatives.

But his editorial ignores exactly the quality of life concerns that Marisa and Rasheed insist should be taken into account. If the study and Dr. Sachar’s editorial lead more physicians to recommend surgery without considering quality of life issues, the result could be more harm than good.

For many UC patients, ‘dead or alive’ is not the only question — and not even the most important.

*The study is Meenakshi, B; et al. “Mortality Associated With Medical Therapy Versus Elective Colectomy in Ulcerative Colitis: A Cohort Study.” Annals of Internal Medicine 163(4) August 18, 2015; pp. 262-270. doi:10.7326/M14-0960. A free abstract and summary for patients is available online.

The editorial is Sachar, DB. “Ulcerative Colitis: Dead or Alive.” Annals of Internal Medicine 163(4) August 18, 2015, pp. 316-317. doi:10.7326/M15-1190. Available online free.

Photo “Eyam Tombstone” by Flickr user duncanh1 used under CC license.

Share on FacebookTweet about this on TwitterShare on RedditShare on Google+Email this to someone