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Support for dealing with incontinence
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 Post subject: Multiple Sclerosis
PostPosted: Sat Mar 18, 2017 2:51 pm 
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Joined: Fri Mar 10, 2017 8:50 pm
Posts: 6
Hey everyone, I'm new here. I finally took the plunge to get some support after the last few years of incidents...

My incontinence, is urge. Mostly urinary, sometimes fecal. I've been wearing depends pads for the last few years because occasionally, I'll have a sudden urge to go and will leak on my way there or even after I've gone. On top of that, I have nocturia and sleep about 2 hours at a time before peeing, and lately my wife suggested I switch from pads, to pull-ups to an actual diaper. At 34. yeesh.

But this wasn't the worst, not even by a long shot.

I realized I had some issues with urge incontinence with my bowel once when I was riding a bus from one part of town to another and my stomach basically turned. I needed a toilet. now. I hopped off the bus in one of my city's seediest neighborhoods. Nothing was open. So what did I do, ran behind a vacant building, dropped trou, and let it go.

That one had a somewhat happy ending. The next story does not.

I was driving students across a few states for a conference, we were getting in late, and I pulled into the front, got them out, helped get their bags, checked them in, and got their rooms arranged. No sweat. Felt tired, no big deal- it had been a long day. Drove around to the side of the hotel, parked the van and felt my stomach lurch. I knew what that meant. I hustled myself in the hotel (it was after 12 so the bathrooms were locked, got on the elevator, waddled down the hall to my room, and sighed. I made it, I thought.
-until I unbuckled my pants. Then the smell hit me. Somewhere, between the front desk and elevator, I had soiled myself. (My best friend with Chrohns asked me how bad..I said "enough")
Defeated, I carefully lowered my underwear, sat on the toilet and kept going. I wanted to (and did a little) cry. 33 year old men don't do these things! But I eventually cleaned up, and went to bed.

After another incident- I went into hiding for months. Nothing but work and home. I wouldn't go anywhere safe. But then as my wife pointed out, I was letting the illness win. So I started sharing my issues with my close inner circle- who didn't laugh, but understood. Slowly things returned to a state of normality. I Adjusted my diet in general (and have lost some weight) so that I don't always have a dodgy stomach. I still wear pads. I wear pull-ups on plane and train rides (basically anything I can't control). And as weird as it sounds...I feel like I'm in control again.


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 Post subject: Re: Multiple Sclerosis
PostPosted: Sat Mar 18, 2017 3:35 pm 
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Joined: Fri Jan 27, 2017 12:26 am
Posts: 110
Hey, sorry you had to experience such things....I have very similar bowel accidents which are really unpredictable. But I've been incontinent my whole life so I've been wearing protection 24/7. I really get how bad your feeling. Every day I have around 4 accidents with no warning, to make things worse I always end up having a bowel accident in my sleep and not waking up for it..... The diaper change and clean up every morning is really just the worst. It's so inconvenient, frustrating, and even though I wear a pants and everything to mask the smell (which actually works really well, gets rid of all the smell) the smell you have to deal with during the cleaning up is nauseating..... But at least the little around me don't get to smell or see anything.... That's a plus, at least allows me to socialize the little I do.....


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 Post subject: Re: Multiple Sclerosis
PostPosted: Mon Mar 20, 2017 6:43 am 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1594
Location: North Carolina - Raleigh area
BRDW, we understand. The physical aspects of bowel incontinence are bad enough, but the emotional aspects can be devastating. :(

You seem to be doing much better, but, if your pull-ups are not adequate for your level of control, you might considerer changing to a full diaper. Only a taped diaper can offer you maximum assurance against leaks after an accident. Unfortunately, I am double incontinent and have a lot of experience with this.

--John


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 Post subject: Re: Multiple Sclerosis
PostPosted: Mon Mar 20, 2017 3:44 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1292
BRDW,

Welcome. Although most of us here are urinary incontinent, a few of us are double incontinent. The difference is huge. Are you under the care of a neurologist? Has pelvic floor physical therapy been suggested for you? Again, welcome.


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 Post subject: Re: Multiple Sclerosis
PostPosted: Wed Mar 22, 2017 11:02 pm 
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Joined: Fri Mar 10, 2017 8:50 pm
Posts: 6
All of your words of encouragement are just...amazing. thank you so much. My wife and best friends are glad that I've finally taken it under control after nearly pretending for the last few years that nothing was wrong and seeking support from people who may understand better than anyone else.

I have the relapse remitting MS version, meaning my issues deal more when something goes wrong. Since I haven't had a relapse in 6 years (knock on wood, yay), I assumed that I could keep living, eating, and acting like nothing was wrong. I now know better. I'm in the process of losing weight (I gained a lot of weight due to stress, fatigue, and lack of activity), and re-setting up appointments with my doctor.

The fecal stuff is mainly under control (small slip ups here and there). The urinary...well, i'm still wearing guards by Tena every day and that works for now. and just because it makes me feel better- ever since last year's disasters, I wear pull ups on planes and trains. I know that the likelihood of all this getting worse is very likely as I get older with MS...but I'm fighting the best I can.


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 Post subject: Re: Multiple Sclerosis
PostPosted: Wed May 24, 2017 9:41 am 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1292
Although nerves problems do play a large part in my incontinence, they are not the largest cause. As you have discovered, although bladder incontinence can be understood on a continuum, from minor to complete, one episode of fecal incontinence is one too many. My attitude is to always choose the heavier protection, and keep a change of clothing and protection handy at all times. Again, welcome. We will benefit from your insights and contributions.


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