I've been called a lot of things in my life but "ostomate" is a new one and I'm gradually adjusting to it. And I've got news for you: "Tain't easy McGee!"Depression is a widespread and life-threatening condition that affects how people feel, think and behave. It can and usually does occur after a permanent colostomy procedure such as mine early in March of this year following the discovery of colon cancer and an emergency ileostomy in December. And I am certainly here to tell you a thing or two about it.
An estimated one million people in the United States and Canada have ostomies, with this number increasing by an annual rate of 100,000. Ostomies result in loss of control of intestinal contents, both stool, and gas. Previous studies have demonstrated that patients with ostomies have decreased health-related quality of life (HRQOL). Specifically, ostomates have been shown to have significant difficulty with stomal care, physical appearance, travel and general lifestyle adjustments.
Facing lifestyle changes is complicated for a new ostomate like me, especially the first weeks after surgery. As a result, fears and insecurities appear, and patients start to feel dissatisfied with themselves.
As new ostomates, we patients must learn to care for the stoma, which can cause frustration and stress if there is limited proper guidance. We have to face the challenge of acquiring skills to live with the altered body and experience a psychosocial transition and for the most part it has been an exercise in discovery for me.
The use of collecting very expensive equipment through a special (monthly) pharmacy order procedure is associated with negative feelings, such as fear, anguish, sadness, and helplessness, which can prompt self-deprecating experiences, linked to feelings of mutilation, loss of health and self-esteem, and reduced self-efficacy coupled with a sense of chronic uselessness and incapacitation, among other emotions. Stoma patients experience changes in their lives especially related to their social network (work and leisure) and to sexuality, aggravating feelings of insecurity and fear of rejection.
Trust me, and I have to get graphic here, having a stoma bag causes numerous personal insecurities both physical and psychological. I'll spare you the more potentially sickening details, but leakage caused by failure of adhesive or bag welds, ballooning of bags, poor siting, and difficulty in keeping bags in place are some of the daily problems. Anxiety and embarrassment over a stoma certainly leads to an alteration in lifestyle, including the ability to find work, desire to travel, and overall self-image.
Fortunately for me as a retired 80+year-old, I do not have to worry about holding down a job and I have no interest in travelling. The problem I have is the potential to become a hermit, avoiding as much people contact as possible simply because it is safer and easier that way. Quite frankly, COVID-19 isolation has fed into my convalescence and period of adjustment, but I cannot always use that as an excuse.
Compounding matters for me is the fact that I also struggle with all too frequent ostomy appliance changes due to a malformed stoma which will be corrected (I hope) with scheduled follow up surgery, virtually as you are reading this post.
With my limited fixed income, I worry also about the outlandish cost of ostomy products which can easily run up to the $3,000+ a year range. Mind you, the federal government does cover a little less than one-third of that amount through an assistive devices funding program and at least that's a help.
Suffice to say, there is need for reflection on the organization of the health system to include adequate care for patients with stoma in order to integrate them into society as citizens and to include new demands for care. For this to occur, it is not enough to recognize only the changes related to the physical and corporal dimension; it is necessary that the health professionals offer support for the inclusion of these patients in society.
I'll get by in the few years I have left because by nature I am resilient (I've had lots of practice) and self efficient, but I wouldn't wish any of this on my worst enemy.
Other than that, everything else is honky dory in my life!
And I'm thankful for small mercies.
Back at you in a day or two...Bet you can't wait!?
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