I have a permanent ileostomy due to an extensive perforation (with resection of all of my large intestine + 10 inches of small intestine).
Having an ostomy is, simply, no big deal.
For anyone who may be having to consider ostomy surgery, understand that modern ostomy products are awesome. Light-weight, low profile, composed with elastic polymers. I wear a 4 inch mini-pouch. No one would know that I am wearing an ostomy pouch. It is simply not noticeable. You can wear skinny jeans and tight-fitting tops. You can wear all of your existing clothing - although I prefer to wear loosely fitting pants with a drawstring, but that is out of my own desire for comfort.
Ostomy pouching systems are air-tight. There is no odor. None. Zero. Nada. The pouches are silent, they do not make noise or rustle - the pouches have a soft cloth covering and most are composed of elastic polymers.
I empty my pouch about 6 times a day. It is a simple procedure that takes less than a minute. Taking care of my ostomy has become a routine as analogous as brushing my teeth.
There is no activity limitation with an ostomy. You can practice yoga, pilates, skate board, swim, bicycle, run/jog, play tennis, even go down a water slide.
I will agree that there is an emotional period of adjustment and adaptation. It is an individual process. I took to my ileostomy quite easily. In fact, I would argue that my "new normal" has certain benefits to defecating via an intact digestive system and anus. I never have to worry about being near a bathroom or being restrained by keeping to a bowel program and its particular timing. I never have to worry about constipation.
There is a quality life with an ostomy. My life did not measurably change with an ostomy. My other health ailments have had far more impact on my health and life than has the ostomy.
The United Ostomy Associaton of America has a genuinely supportive and caring forum, similar to the Colon Club. I encourage anyone who sees a possible ostomy on their horizon to log-on to the UOAA website and read and browse through the forum. You will find a wealth of information and real-time advice from both new and seasoned ostomates. During the early weeks of my recovery, the UOAA forum was my life-line. The friendships that I have made there have proved to be invaluable. www.ostomy.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.