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ANONYMOUS’S PERSONAL STORY

I’m really not completely bowel incon but after a hemacolectomy (removal of aprox 1′ of decsending colon for concentrated diverticulum), I began to experience very severe urgency. It is such that even with a bathroom near by, I rarely make it. Every effort to use the toilet has resulted in soiled clothing and the difficult task of cleaning the bathroom. As you can imagine, this restricted my normal activities in the beginning, at least until I became more accepting of my situation and developed adequate “protection” for limited social activities. Doctors have told me that this problem presents in a small number of patients post-operatively and that it should slowly go away on its own. It was recommended that I use a bulk producing fiber supplement (Metamucil) to prevent further problems with diverticulitis. (was hospitalized 2x with nothing by mouth for a week along with a course of Cipro prior to deciding on elective surgery. The threat of an emergency colostomy and a second surgery to “hook”me back up convinced me) The Metamucil worked woders for loose stool but did nothing for the severe urgency and in fact made matters worse as there was now enormous volume several times a day. Here it is 20 plus years latter and still no signs of relief. My faith in surgeons is at zero. Being a take charge guy and not willing to be a shut in, I developed a “protection” system that allows me the freedom I expect in life. Believe me, it was far from easy. It took me years to have confidence in myself and the protection I use. But it did happen over time and I now just simply own it. I still enjoy family, friends and activities from golf to kayaking. I’m socially selective but try not to restict myself just because I need to use diapers. I take numerous precautions, including the use of Nullo deoderant pills, a constant skin barrier (Desitin-zinc oxide), and confi dry 24/7 disposables as a “diaper liner” under a cloth pull-up diaper from Kins. Covered by some heavy gage plastic pants and with the Nullo, odor becomes a non-issue.  This keeps stool off my cloth diaper, increases capacity and prevents leaks. I use some athletic compresion shorts when out in public and have never had a comment or anyone notice (to my knowledge, not that it would matter.)  I dress casually with appropriate loose clothing and while I don’t advertise my condition, I don’t hide it either. I own it. This comfort level took years to achieve and there was a lot of trial and error. I retired early (at 56) and refused to let this rule my life like it did for at least 5 years. It’s funny becuase when away from home for hours (library, family gatherings, sporting events etc.) friends will ask if I’m “ok” meaning do I need to attend to a wet or messy diaper. With my level of protection I can go all day with urine (up to 10 hours) and BM’s ( my protection can hold several large BM’s as the dry 24/7 provide superior containment). With the way I wear my protection it’s virtually impossible for a public change. I’ve never had to after the first few years and with the Nullo and plastic pants/compresion shorts along with the Desitin, it just comes down to becoming comfortable with a load in my pants (which I admit took a lot of getting used to). But the hassel of a public change became so traumatic the adjustment was easy to make. With the bulk producing fiber supplement I can count on one hand over 20 years that loose stool events that put an end to whatever I happened to be doing. Don’t get me wrong. It has been a very frustrating and yse, at times depressing situation to deal with. But when it became apparent that the problem was not going away I simply had to do something that would return me to at least a sembalance of normalcy. I’m not a super strong person but I am pragmatic and my way of dealing with this potentially limiting affliction was to develope a system and routine that allows me to be a part of the human race. I read these other stories and it makes me want to cry. So many surrendering and withdrawing. I am well aware that constant loose stool is an almost insurmountable complication, There are still ways to prepare. It is so very imortant that one stops fearing what others think. Especially those close to you. They have been my inspiration to forge ahead and join them in living a full life. I apologize for running past the 500 word limit but I felt what I had to say should be shared so that others could see that a full life is possible. The inconvenience of having to change a diaper, often several times a day, is in fact a MAJOR inconvenience. But if that is the hand youv’e been delt, I suggest finding a way that works for you to return to as normal a life as possible. And thank God for understanding friends, family and spouses.  

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