I have a permanent ileostomy due to an extensive intestinal perforation owing to long-term use of corticosteroids. My intestine basically unzipped like a long zipper.
I find living with a permanent ostomy No Big Deal. It is just a non-issue. My ostomy wafer+pouch is comfortable, discrete, and low profile. No one would be aware of the placement of my ostomy in my day-to-day life. It takes only a few minutes to empty the pouch, easy-peezy. My stoma is about the size of a quarter and is actually quite cute. There is no "yuck" and no "eewww" factor to my stoma.
I came to become Best Friends with NWGirl (Belle), a former Colon Club member and member of the UOAA ostomy forum. Bella made the decision to have a permanent colostomy after months of distressing bowel issues following her rectal cancer resection and takedown. You can do a search of Belle's insightful blog on this forum where she writes on her decision making process and life with her permanent colostomy. I believe her writings are archived on this forum, titled "Colundrum of a permanent colostomy" or something similar. Her writing is a 3 part series and is an eloquent and personal narrative.
Perhaps someone on this forum who is technologically adept can find NWGirl's 3-part blog and provide a direct link?
Belle would love to know that her words and writing continue to help and aide others. The world lost a great person with Belle's passing.
In my opinion, ostomies get a bum rap. There remains significant negative stigma associated with the words "ostomy" "stoma" and "bag." My ostomy has improved my quality of life and I am grateful for it. I honestly find having an ostomy to be preferred to defecating with an intact digestive system and anus. I never have to worry about bathrooms and toilets or whether the activity of my intestine will interfere with my morning or with my day. Once you find an ostomy wafer + pouch that is a good match for your abdomen's topography and for your day-to-day activities and lifestyle, life with an ostomy is pretty good.
With a colostomy, you would also be able to use disposable closed-ended pouches. Simply remove the pouch after a bowel movement, place in a plastic bag, seal, and dispose of in the trash. Closed-ended pouches make colostomy care neat and clean with a minimum of time or effort. You can also look into irrigation. Irrigation allows those with a colostomy to "flush" the lower colon each day of retained feces - minimizing the need to wear a pouch.
Do not be fearful of a permanent ostomy. In my opinion, there is significant up potential to having an ostomy when the alternative is ongoing intestinal distress or social embarrassment/worry of fecal incontinence or fecal accidents.
- Karen -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.