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I have been away from the site for a bit but would like to weigh in on what Mike’s issues have been since his surgery at the end of Feb. He, like most others here, has a schedule he keeps to. During the day he is dry..no real problems. At night, he goes to bed at 10, gets up at 1, then 4, then at 7. If he misses the alarm even by a few minutes he is wet. The guards suffice though. Like one of the other members noted, for Mike, it doesn’t seem to matter whether he stops drinking at 7 pm or keeps drinking until bedtime. We have tried both ways and if he stops drinking early, he just ends up being very dehydrated and not necessarily having a “dry” night.
As for other issues, certainly the bowels have been a problem. Every time he has to urinate, he has a bowel movement. This is causing other issues, like hemorrhoids and just general discomfort. Hence the conoloscopy he will be hving on Nov 1. The gastro seems to think that Mike may actually be constipated way up high and/or have some scar tissue from the neobladder surgery causing issues. We will see.
He,unfortunately, has had 2 serious infections which required hospitalization. All is good in that dept. now.
Ah, then there is ED. Yup ED is with us too although the nerve sparing seems to have worked to some degree.
The main thing I have noticed as his wife and caregiver though is that he is very frustrated in general. He is unable to do the things he would have done before because of lack of energy. This frustrates him to no end. It has been especially evident with having to hire people to do house renovations that he would normally have been able to do.
I know I have been long-winded but it sure is nice to know that we are not the only ones going through some issues. Overall, it’s been a long haul but at least the uro-oncologist says the neobladder is functioning well.
thanks for listening.
Monique