20210225 : my incontinence...

I ve hesitated to send this note. Worried its not dignified (for the reader, i have none anymore). But it is a big part of my everyday life and struggle, so thought I'd share it anyway.

Almost all stroke survivors face some degree of incontinence after. I'm no exception. The degree is different...

From the time of the stroke, i have been unable to pass motion. My wife has tried various permutations and combinations of foods, fibers, ghee not to mention strong laxatives, etc. nothing has helped.

I have to rely on being administered enema every 3 - 4 days. The chemical in the enema causes involuntary movement and I'm relieved.

For more than a year, it was so bad,  the Enema would not even trigger involuntary movements and was no use. Every 2 - 3 days, they had to do, what is referred to as PR in nursing circles. Basically put their fingers in deep, and pull out what they can. It's very painful, but even more uncomfortable otherwise. I am glad enema is working now, so i can ask for it every 3-4 days when it becomes unbearable.

Thing is, i am not constipated in the traditional sense. I am on a liquid diet and get enough of laxatives. I am not constipated at all. 

In order to pass motion, your bowel muscles need to contract, and the sphinter muscles have to relax and open up. And we know the state my muscles are in. Thats why the struggle. How to get to voluntary movements without phisio/exercises beats me.

The other issue with this is the gas formation. I'm simply unable to pass gas. I have to rely on some involuntary trigger like a violent cough and some of it comes out or the enema every few days..

When there is lots of gas formation, like past 2 days, the pain and discomfort is unbearable. Most people think the gas formation is in the stomach. It would have been easy if it were so. Unfortunately, it forms in the colon. All 27 feet of it (we have 22 feet of small and 5 feet of large intestine). All coiled up in the abdomen. That's why its so painful because of the pressure on other organs and diaphragm. To displace this gas, up or down so it can be expelled, we need to be able to move and stretch in all directions. In my state, what to do???

Urination is a whole other thing, but its not as bad as bowel movements.

For first 5 months in the hospital, it didn't matter, i was on the catheter, i never knew when i passed urine.

After that was a brief period of just wetting the diapers  before moving to the urine can.

I can feel the pressure build up on the bladder and indicate so, but i can't still pass urine by applying pressure using muscles. I generally have 15-20 secs from the time i get the sensation to it starting to flow by itself. If the room is not vacated very quickly then and can not given quickly, it means a wet diaper. Some random times, even when the bladder feels the pressure, the urine doesn't flow and they have to press and put pressure on the bladder to start the flow.

Once it starts, i have no feeling about the passing. If i cant see, i wont know. There are several times when I can't see, indicate im done, and take out the can, only to find im still peeing and i make a mess..

That's my daily struggles..