I would come to understand radiation destroyed 2/3rd of my rectal muscles. It is why I have a permanent colostomy bag today. I'm telling you this in case this might happen to your mom. For me, getting the bag gave me my life back. I can eat what I want and not worry how certain foods will effect me. I can be out all day and not worry where the nearest bathroom is. If you have any questions, let me know.
ocstacy wrote:Hi Lee! Thank you for replying. My mom still does not accept that she may have an ostomy bag even though her surgeon mentioned that she may lose her muscle control. This morning, I helped my mom out as she needed help. Her pain level was a 10. I helped her w/ the enema, then the KY jelly insert that you have to insert prior to MRI. She ended up having an MRI with contrast. She said the shot hurt. By the looks of what is going down there, it looks like a hot mess, but not super bad. Just looks like the tissue is coming out, hemorroids, and swollen rectum. Poor thing. I even mentioned to her that her life will maybe be so much better with a bag so she could actually enjoy life again. She literally doesn't got anywhere because of the toilet issue. She says right when she eats, she feels like she has to go. So it makes sense if the radiation zapped her poor rectal muscles. (sphincter) She said the pain was worst after the radiaton ended.
For the surgery, how long do you think she will be in the hospital for? How was your recovery? Is it hard to manage and clean the ostomy bag or is it pretty easy? What happened to your rectum? Do they seal it off, or is the tissue still there or does the surgeon remove that too? That is the part where I am so confused. He said she would have the temp bag, then reversal in 5 months or so. Wonder why they wait so long for reversal. Prayers for positive results.
MissMolly wrote:Ocstacy:
If surgerical pathology shows the anal sphincter have been compromised by infiltrating cancer cells, then a colostomy would be the more compassionate option. Loss of anal sphincter control almost universally means unrestricted fecal incontinence necessitating the wearing of adult Depends. There is nothing pleasant about wearing soiled disposable undergarments.
If surgery involves a lower anterior resection, there is always risk for developing LARS (lower anterior resection syndrome). Delicate autonomic neural motor and sensory pathways are damaged, with disabling symptoms that are not easy to resolve (clustering episodes, bowel movements 10 or more times a day, incomplete emptying, anismus (painful muscle spasms of the pelvic floor).
Ostomies span all ages - from infants with hereditary-based slow colonic motility (Hirshberger's disease) to adolescents and young adults with Chron's and ulcerative colitis to middle aged individuals with a ruptured diverticulosis. Stomas and ostomies are not restricted to "old people." On the UOAA forum, there are members in age from 14 years of age to 85 years of age - and every age in between.
If the choice is between fecal incontinence or a permanent colostomy, I would argue in the affirmative for an ostomy. There is a good quality of life to be lived with an ostomy/stoma.
. . . Knowledge is power.
Karen
Like Karen said, Knowledge is power. Karen layed it out very well. If your mother's anal sphincter muscles are compromised in any way, really the colostomy is the way to go for "a higher quality of life".
There are any number of sterotyes and mis-truths about ostomies. One reason I participate in the forum is to help dispel negative stereotypes and perceptions of an ostomy and stoma. I do so out of loving memory to my friend, Belle.
You may want to read Belle's personal blog about her decision to request a permanent colostomy. Her blog is a 3 part series archieved on this forum in the Blog Section. Her series is titled "The Colostomy Columdrum" (or similar title). Belle takes openly about her personal decision to opt for a colostomy after a disruptive life and bowel embarrassment after an ileostomy takedown for rectal cancer. Her narrative is raw and personal and a valuable contribution to this forum that lives on in her name.
Feel free to go to the United Ostomy Association of America web site and discussion support forum. You will meet a wide swath of people living full and engaging lives with an ostomy. http://www.uoaa.org
Do not be afraid or fearful of the prospect of a possible colostomy for your mother. Her quality of life may well be better with an ostomy than with damaged anal sphincter muscles and incomplete sphincter control.
There are any number of sterotyes and mis-truths about ostomies. One reason I participate in the forum is to help dispel negative stereotypes and perceptions of an ostomy and stoma. I do so out of loving memory to my friend, Belle.
ocstacy wrote:Thank you so much for sharing this with me. I wrote my last post at 1 a.m. so my apologies for wording things and hurting people's feelings. Those were not my intentions at all, so please accept my apologies. I need to start putting myself in other people's shoes and show more empathy about the unknown.
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