When my friend Belle shared conversation in the weeks prior to her passing, she implored me to provide comments and advice on living with an ostomy on this forum when she would no longer be here.
Belle wanted a more open and fair appraisal of living with an ostomy/stoma, as she was advocating in her writings and blogs here. Belle wanted to see a lessening of the stigma that often precedes the physical awareness of an ostomy. Belle agonized over deciding on a permanent colostomy after she struggled with post-operative bowel dysfunction. In living with her colostomy, she wished that she had made the decision earlier.
So here I am . . . serving as one voice of a generally "pro-ostomy" perspective.
I have had an end ileosotmy for close to 6 years. My ileostomy was necessitated when the length of my large intestine dehisced, like the unzipping of a l-o-n-g zipper. I was hospitalized for 46 days due to systemic septicemia. The recovery was a long slog.
I can honestly say that living with my ileostomy is A-OK. My ileostomy is a part of me, no different than my 10 fingers and 10 toes. I am the same person that I have always been. The ileostomy has not changed me.
I have a difficult time understanding the calling of individuals who advocate going through an iffy reversal in order to "get back to your original self." I am my original self with my ileostomy.
I can appreciate that a diagnosis of rectal cancer and the year of treatment(s) is an emotionally and physically exacting endeavor. I can appreciate that restoring one's intestinal routing to its original format is a testament to not letting a diagnosis of cancer prevail. That is an admirable quest. But sometimes, the goal of "getting back to your original self" seems self-defeating if bowel incontinence and anal leakage remain as unwanted by-products of restoring the intestinal plumbing to its original self.
I do not walk around the a "bag of poop" on my abdomen. I hear this concern of individuals who are facing a possible ostomy - concern that they will constantly have a "bag of poop" on their abdomen. I empty and drain my mini-pouch 6-8 times a day. I drain my pouch when I use the restroom to urinate. Draining and emptying my mini-pouch takes 2-3 minutes. My pouch lies flat against my abdomen, for the most part empty. No one would even remotely know that I have an ileostomy and that I am wearing a pouch.
Words matter. I prefer to use the term "pouch" to describe an ostomy "bag." The word "bag" carries a more negative stereotype. With the word "bag," my mind conjures the image of a distasteful looking brown bag that wrinkles and makes noise and that is generally unbecoming.
Modern ostomy products are quite advanced from a technology and functionality standpoint. Ostomy wafers are composed of a hydrocolloid matrix that adheres to the skin owing to the material's reaction to body heat that forms an air-tight bond. There is no adhesive nor glue to an ostomy wafer. Ostomy wafers + pouches are discrete and low profile. The pouches are composed of a plastic polymer with combined elastic and collagen fibers. Ostomy pouches are quiet; they do not rustle or crinkle. Pouches come in 3 different sizes - mini, midi, and maxi. A person who is small and petite, like myself, does not need to accept a pouch that drapes the length of his/her thigh. I wear a mini-pouch. It is about 4-5 inches in circumference.
Yes, it is true that individuals with a colostomy are more prone to a paristomal hernia. This is owing to the larger diameter of a colostomy stoma and the larger diameter of the segment of intestine used to form a colostomy stoma than a comparative ileostomy stoma. The abdominal tissue deficit in creating a colostomy stoma is larger than that in creating an ileostomy stoma.
But the No. 1 precipitator of developing a hernia is increased/excessive intra-abdominal pressure. High intra-abdominal pressure influences a segment of intestine to push outward, out of the body. The stomal open gives a ready exit point.
A large number of individuals with a colostomy who go on to develop a parastomal hernia also excessive weight housed around the mid-section of the gut/waistband. Excessive abdominal weight (visceral fat) is the leading factor that causes higher intra-abdominal pressure and a resulting parastomal hernia.
Wearing a mildly compressive belly band or belly tube can go a long way to minimizing the risk of developing a hernia. These are similar to maternity belly bands that mother's-to-be use to support their growing abdomen + fetus. Other options include wearing compressive under ware/under pants composed of spandex or lycra. The goal of a belly band or spandex under ware is to provide an inward pressure that can counteract the normally present outward intra abdominal pressure from the enclosed organs and visceral fat.
ComFizz is a family-owned company based in England that makes undergarments and hernia support wraps specifically for individuals with an ostomy/stoma. I have been wearing ComFizz undergarments for 5 years and highly recommend them (I wear the women's camisole top and women's boy shorts). ComFizz has received several awards by the British NIH for their innovative designs and quality of craftsmanship. Undergarments for individuals with an ostomy is all that ComFizz does. And the company does it well. http://www.comfizz.com
Ostomy Secrets, based in Texas, also makes undergarments for individuals with an ostomy/stoma. Their garments do not have the same attention to hernia prevention as does ComFizz, however. Ostomy Secrets under ware provide an inner pocket for the placement of an ostomy pouch. Ostomy Secrets under ware does much to "normalize" having an ostomy and provides detailed finishings that give their undergarments an uplifting feminine touch (or, in the case of men, a gentleman touch). http://www.ostomysecrets.com
Lastly, Belle's personal narrative chronicling her decision to proceed with a permanent colostomy is archived on this forum on the "Blog Post Archive" on page 1 of this forum. Belle's writing is titled: "The Colostomy Conundrum." It is a 3 part written narrative. Her story is moving and powerful. She wrote the pieces hoping that her words could help others who might be facing a similar situation and decision. Take the time to access and read Belle's blog writings.
Freddy, whatever your decision . . your decision belongs to you and is your own.
- K -
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.