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The Fear of Temporary Ostomies
November 24, 2009
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Something about having a temporary ostomy seems to scare people a lot more than a permanent ostomy. This unfortunate phenomenon is something I’ve started to pick up on through talking with many ostomates around the world.
Many of the people I meet through the Ulcerative Colitis Vlog are people like me who had their colon removed and are waiting to get an internal J-pouch constructed. Between living with a colon and living with a J-pouch, most people have to live with an ostomy for three to six months, sometimes longer. People initially think that it’s better to live with a temporary ostomy than a permanent ostomy, but in actuality, people with temporary ostomies often have a rougher time emotionally.
Just as I was putting the finishing touches on this blog entry I learned of a new study by the University of Michigan Health System that found proof for this exact observation—that people with temporary colostomies (in the case of this research) do not cope as well with their ostomy as people who have permanent colostomies.
The researchers reasoned that people with temporary ostomies hold onto some vague notion of “hope for the future” and this hope holds them back from living their lives. People with permanent ostomies, on the other hand, are forced to move on with their lives because there often isn’t a better option available to them. Their future will never improve beyond the ostomy, thus, they learn much sooner how to deal with it emotionally.
Not all temporary ostomates are miserable, of course, but some are. And hope isn’t the only cause of misery. From my experience, temporary ostomates often have a misplaced idea of strength and courage. They think in their minds that they can “conquer” their ostomy and tough it out until they get their J-pouch. Truthfully, though, ostomies are not the enemy but the ally in the fight to get our health under control.
As I approached my ileostomy, I was infected by this premature idea of courage. I told myself privately and said to others publically that I would have to “pause my life” for a year while I went through surgeries and recovery. It was something I would just push through and bear and in the end, once I had my J-pouch working, then I would go back to living.
Of course, trying to push through without support only gets one so far. Four months after my colectomy, J-pouch construction, and living with my new diverting loop ileostomy, I started the Ulcerative Colitis Vlog, and I am just starting to realize how much I needed that project for my own wellbeing. The project gave me a purpose, a mission, a goal to work towards, and it connected me with a community that I never knew existed.
And through it all, I learned that I wasn’t as strong as I initially thought, and that I did need the support and encouragement from others who knew what I was going through. My courage and strength were redirected and I think hope reevaluated. Now, hope wasn’t some distant idea of one day being healthy and “moving on” with life. Rather, hope appeared by showing me that I could live my life in the present, and that I didn’t need to wait until some arbitrary day in the future to get my life back.
Unfortunately, many temporary ostomates never get connected with the IBD/ostomy community, either through online communities or physical support groups. Thus, it falls on the shoulders of us, people who have been through it and know what it’s really like, to seek out the unconnected ostomates of the world and help them through this difficult time of life.
Stay strong,
~Dennis
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| Diagnosed with ulcerative colitis at age 21, Dennis had his colon removed. He lived with an ileostomy and now has a fully functioning J-pouch. Dennis is the creator of the Ulcerative Colitis Vlog, a video education website for those on similar journeys. |
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