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Support for dealing with incontinence
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 Post subject: Rock climbing accident
PostPosted: Mon Oct 21, 2013 4:34 pm 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1943
Location: North Carolina - Raleigh area
New guy here. Some 20+ years ago I suffered a life-threatening accident while rock climbing (a real accident not a you-know-what :D. 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


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PostPosted: Sun Jan 24, 2016 3:46 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
Big question, DO YOU STILL CLIMB ROCKS? AND IF SO, ARE THEY STILL THE BIG ONES?

Okay, maybe inappropriate humor but it's what I know. Shoulda heard the doozies we told in Iraq about things... 8)

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius


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PostPosted: Wed Feb 24, 2016 5:12 pm 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1943
Location: North Carolina - Raleigh area
Hi Porkchop,

No, I became a boater. The water is much softer if you fall overboard! :D

--John


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PostPosted: Thu Mar 24, 2016 1:00 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
JDinVirginia wrote:
Hi Porkchop,

No, I became a boater. The water is much softer if you fall overboard! :D

--John


Yikes, boats are dangerous,..... FOR YOUR WALLET!!!!!

Boat: (Noun) a big hole in the water one throws money into

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius


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PostPosted: Thu Mar 24, 2016 2:49 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
I can attest to that. Used to have a 17ft joy rider/fishing boat. The boat was a paid for inheritance, yet I probably spent $150 a month on it (mostly insurance and gas), AND only took it out 4-6 times a year.

After my second surprise thunder shower while out on the water (I live in florida- it happens a lot), I said screw it and sold the thing.

I do have to say that being diapered was quite a blessing though. Not being able to go for 6+ hours was brutal on my wife (unless she went "swimming" that is).


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PostPosted: Thu Mar 24, 2016 4:57 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
I am incontinent because of a genetic disease, Marfan Syndrome. Marfan comes in a wide variety of guises; some can kill before adolescence; mine is minor by comparison. Marfan has given me two fractured vertebrae and three compressed discs in my lower back. I get sciatica in both legs occasionally, more frequently in my left leg, and the nerves which operate my pelvic floor are pinched and irritated. The feeling can best be described as a cramp of my bladder and rectum. Those cramps were excruciatingly painful; the urinary pain was only minimized by a sphincterotomy. I still have the pain, but it is much, much less now. My fecal incontinence is caused by the Marfan, above, plus gastroparesis, or stomach paralysis. The diet for this is low residue, or no residue, which always gives me a colon blockage. Diarrhea collects behind the blockage, seeps past it, and I soil myself. My GI specialist told me to manage this with stool softeners, laxatives, suppositories, and enemas. All of this makes functioning in public a gamble that I sometimes lose.


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PostPosted: Thu Mar 24, 2016 8:05 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
Brian,

I'm jealous I DON'T have a boat, I would definitely putter around a lot... I love the water!!

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius


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PostPosted: Fri Mar 25, 2016 12:09 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
You know that's what I thought at first too. It's actually quite a chore hauling a boat in and out of the water though. Plus, when you're out there it's almost like being confined to your room while on a mini camping trip. Being diapered doesn't exactly go well with being in and out of the water a lot too, so I hardly ever went swimming.

Heaven forbid you get into a boating accident and end up in the water with a saturated wet diaper. They get surprisingly heavy when in the water and will drag you under if you don't have on a life jacket. (I once tested out what would happen if I left my diaper on in my pool)


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PostPosted: Fri Mar 25, 2016 3:09 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
Brian, true.... but I would wear a vest and not plan on wrecking!! :lol: :lol: :lol: :lol:

_________________
When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius


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PostPosted: Fri Mar 25, 2016 4:30 pm 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1943
Location: North Carolina - Raleigh area
Boats are great fun but require a LOT of maintenance, particularly when they are so large that they are not trailerable and remain at dock. I was really into boating, taught classes, etc., but with my back problems I simply got to the point where I could not hang halfway upside-down in the engine compartment to change a fuel filter, etc. Of course, if you can afford a crew, there isn't a problem! :D

--John


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