New guy here. Some 20+ years ago I suffered a life-threatening accident while rock climbing (a real accident not a you-know-what
. After a pelvic reconstruction, I was paralyzed from the waist down and was told that I probably would not walk again. After extensive physical therapy I was lucky enough that I did regain most of my mobility, but suffered a lot of damage to my pelvis, rectum, and anus. The bottom line is that I lost most of the nerves to sense an approaching bowel movement and many of the nerves that control the sphincter muscles. I was able to compensate fairly well for many years, but with age, I reached a tipping point and everything went south rather suddenly where I now am moderately fecal incontinent. If I am lucky and have warning, I will try to make it to a toilet. Often I do not receive enough warning.
I have had all the tests and even gone to a specialty clinic at a major teaching hospital. I had endoscopy, sonography, video X-ray defecography, anal manometry, digital rectal nerve mapping, and rectal biofeedback. If it was capable of being inserted up my backside, some doctor, nurse, or technician put it there. These were very capable and motivated people. They did not provide me with a magical solution, but they were able to show me where my limits are so that I can plan accordingly. I learned that nothing I do can compensate adequately for the lack of nerves for sensing.
I now use preventive enemas to flush out my bowel every morning. Then I go about a normal day. I do it because it works - every time - predictably. My success rate now is 97% accident-free days (after the enema). That is pseudo-continence as I am managing the symptoms of the incontinence rather than the cause. Otherwise I probably would have 3-4 accidents per week. Even surgery was unlikely to provide me with as high a success rate as I have achieved. However, the success rate is because I was not satisfied to passively listen to my doctors. I did extensive research and experimentation and then was able to dialogue with them in a meaningful manner. When they could tell that I was motivated, well informed, and unlikely to do something risky or stupid with the enemas, they approved my procedure.
I wear diapers 24/7. If you met me you could not tell. I have learned all of the little tricks from the serious support groups. The messages in the archives here were invaluable.
Best wishes,
--JD
