You wrote: "A colostomy seems drastic."
I comment on this site about living with an ostomy - having a permanent ileostomy myself and giving perspective on living with an ostomy out of respect, friendship, and beloved memory of Belle (NWGirl), a beloved former member of this forum.
You can research Belle's personal blog about coming to her decision to elect a permanent colostomy here on this forum. Belle wrote a compelling and heart-rendering narrative, a 3 Part series, titled "The Colosotmy Collundrum." Belle wrote this 3 part narrative with the hope that her words would reduce the stigma associated with a stoma and an ostomy. I highly recommend its reading. Just search for her blog using the search feature.
The world lost a bright light with Belle's passing.
I have a permanent ostomy due to a severe intestinal perforation owing the years of prednisone. My intestine unzipped like the zipper of a rain jacket. My hospital stay was 46 days. The recovery was grueling.
Living with an ostomy, for me, is no big deal. I rarely give it notice in a day. I wear a small pouch by Coloplast that is composed of an elastic polymer. The result is a pouch that is thin and low profile, flexible and moves with my body. I practice yoga every day and my ostomy pouch does not hinder me in the slightest. Of the many health challenges I deal with, the ileostomy is the least of my concerns or troubles.
A colostomy is much the easier to care for as compared to an end ileostomy or a loop ileostomy. With a colostomy, you can expect that your bowel routine would be essentially the same as it is now. That is, is you have a bowel movement once a day now, you will likely have the same frequency post surgery. With a colostomy, you have the option of wearing single use, disposable ostomy pouches. When you have a bowel movement, you simply remove the pouch, toss it into a plastic bag, and place into the trash. You then place a new pouch. Easy peezy. No mess. No fuss. You never carry a pouch with feces on your abdomen.
Colostomates also have the option of irrigation. This involves flushing the lower colon with warm water once a day similar to an enema. Irrigation allows individuals with an ostomy to be pouch free or near pouch free.
People have ostomies for a variety of reasons. Chron's disease and ulcerative colitis are two conditions that can result in an ostomy. People of young ages with Chron's and ulcerative colitis have ostomies in their 20s. An ostomy is not reserved for the frail and elderly. Ostomy pouches do not make noise or crinkle. Ostomy pouches are odor free and amazingly secure. You can swim and water ski with an ostomy; you can bike ride and play racket ball; you can wear your normal clothing, including jeans and fitted shirts. There is a good life to be lived with an ostomy.
Come to the United Ostomy Association of America (UOAA) forum and visit with individuals with ostomies. We have several regular posters in the UOAA forum who underwent APR resections and ultra low LAR resections and who are currently NED. I think they will tell you that deciding on surgery was the right choice for them.
In particular, seek OTDave. He is a 37 year old rectal cancer survivor, 7 years NED, post APR. He had two young children at the time of diagnosis. He is an avid outdoorsman. Having an ostomy has not changed who he is.www.uoaa.org
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.