AMN EASIER
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Incontinence

Did that post heading make you react? It wouldn't be surprising.

Dealing with bladders and bowels that refuse to behave the way they used to is something all of us have to deal with sooner or later.

The scientific community and government funding has been poor in terms of putting serious effort into helping with this problem. The only thing that will change this is when governments finally count the cost of dealing with the effects of incontinence, especially with ageing populations.

So it might be surprising to discover which area of the scientific / research community is actually thinking about this - mechanical engineers.

I was an engineer originally and have an engineering mindset, so I was pleased to see this report from the UK's Institution of Mechanical Engineers. Here's part of the intro:

Continuing embarrassment and lack of public discussion about incontinence, a condition which affects one in three people at some point in their life, are stifling the development of new products, according to a new report by the Institution of Mechanical Engineers.

The report, Incontinence: engineering innovation to enhance quality of life, adds that Government has largely overlooked this issue, even though incontinence burdens the NHS with annual healthcare costs of over £2 billion per year and is a major cause of admissions to care homes, adding pressure on already stretched public services.

Here is a link to the report:

imeche.org/news/news-articl...

Read the full report: imeche.org/reports

Merry Christmas and Seasons Greetings to all.

Chris

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I'm going to be very honest and blunt about this topic. I've posted before about my urinary issues (frequency, urgency, detrusor sphincter dyssynergia, nocturia, etc.). However, my bowels have recently been going me problems. Here goes...

Three weeks ago, my wife, infant daughter, and I were at a grocery store, when sudden bowel urgency hit me with no warning at all. I told my wife I needed to go to the restroom right away, and took off towards it. As embarrassing as this is to admit, I wasn't able to make it. That had never happened to me before, but it's a new symptom. Neurogenic bowel, I suppose? The odd thing is, I tend towards constipation. I can be constipated for three days straight, and then sudden bowel urgency will hit me.

My mother, who turned 60 this fall, and also has AMN, has been having similar problems this year. I understand that bowel symptoms are quite common for women with AMN. I'm not sure if they are as typical for men with AMN.

If anyone else is willing to share their experiences, it would certainly be appreciated. I realize that this can be a delicate topic, but I feel that having a chronic illness removes embarrassment. We don't really have time for anything but complete honesty.

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Hi Aaron! I am a woman but I can relate. It has only happened a couple times to me but it's just so embarrassing when it does! Like you, I tend toward constipation which can be severe but then when the urge hits (and I don't just mean diarrhea), I cannot hold it for more than a couple minutes, if that. I have tried to implement a "bowel regimen" the way spinal cord injury patients do so that I can "take care of business" in the morning and go about my day. It seems to be helping a lot. I think the spinal cord injury websites and support have some good information that can be helpful to us. As for the urinary stuff...well, that is a daily issue for me and has been for a while now.

We have to keep our sense of humor and laugh when we can about it...if only to keep from crying, right?

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Hello tieaknot! Thank you for sharing your experiences. I would be very interested to learn more about your "bowel regimen" that you mentioned. If you prefer, feel free to send me a private message, but I believe that this information will be useful for others, as well.

There is absolutely no regularity in my bowel routine at all. I've tried Metamucil, dried fruit, and Miralax, and none of them really alter my experiences. My gastroenterologist recommended combining Metamucil and Miralax at once, but this is difficult to rely on, as Metamucil cannot be taken within two hours of taking medication, and I take meds three or four times a day.

People without these issues have no idea how difficult this can be. Chris mentioned in a post below some things about not taking trips as much due to bladder and bowel problems. Boy, can I relate to that. I constantly worry about being near a bathroom, no matter where I am.

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Yes, to be blunt, I've lost count of the times I have pissed myself.

Though, I've only soiled myself about six times.

See how I resisted using blunt language the second time?

What's the solution? I know not.

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This is an amazing topic - we’re all affected on one level or another. I haven’t yet read the article, but I will. When I started having symptoms of AMN, I never considered what could become of my ‘pristine’ bathroom habits. Urinary incontinence was the first to be a problem, quite sporadic but a problem nonetheless. I never knew how embarrassed I could be!! Over the years my only choice was building the level of incontinence pads depending on day, where I was going, etc. At the beginning I learned not to drink “too much” so the accidents were kept at bay ... then there wasn’t too much or too little but where was the nearest bathroom.

I thought I’d had the worst of it behind me when I would occasionally become bowel incontinent. Please excuse the bluntness, if you need to, but I remember standing at my closet and quite suddenly having the loose stool running down my legs. I was unable to move, fearing making a trail, so I stood there and just went. I called to my husband and he came in and just got it all cleaned up, even me. I took to the bed and cried all day. Is this what my life was going? I would run into the house after eating in a restaurant and barely making it to the bathroom. Loose stools again! I don’t say diarrhea because I’d go once and then not have trouble again. Oh, but getting myself, my clothes and wherever I was cleaned was a real job. Thankfully, that doesn’t happen often anymore! Why not? Who knows????

Over the last 10 years I have, due to different meds, become much more constipated. My doctors had me using Senna products to help relieve this. 15 years later doctors have cut that off to see if my body would take back over. Lol!! Yeah, this is another retraining I can do without. I was told to use Miralax. I have used it for over 8 months and have finally, after lowering the dose down from a capful to 1/2 teaspoon, discontinued that. I’m now trying to regulate my diet better to see if I can take control again. Not going 3-5 days is better for me than having bowel seepage that affects my private areas that causes UTIs and vaginal infections. Being in a wheelchair most of the day is a compounding problem.

Happily, things are better bowel-wise but bladder problems are still my problem. Daily use of pads, sometimes changing hourly, is my current deal. Thankfully, I’m under better control of bowels. I had a stint of self-catheterizing and stopped after I got very little result from that. But now I know how to do it if I need to again!

Sorry this is so long but I wanted to share to let you all know that what you may be going through isn’t just your trouble!

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Same troubles with my mum - AMN symptomatic - first urinary incontinence then bowels. It is a sporadic event but frequent enough to make us feel totally out of control. She was sad she could no longer go to the very helping aqua classes. Instead I found AgeUK has a good variety of products- even stylish incontinence swimming costumes! That made her day. Not easy... (ps. We are in Italy - luckily they deliver abroad :)

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Hi monmon, I suffer similar issues as your mum and recently discovered there is a company that created 'period underwear' helpful for those with bladder leakages also. (modibodi.com) They also do swimwear. I recently went to Europe and purchased enough to pairs to get me through, they were great as I was worried about bathroom urgency and as they are 'moisture wicking' I didn't have any embarrassing accidents, doesn't help the bowel problem however. I have had multiple incidents of bowel incontinence and it is highly humiliating, when I need to go it is NOW. The bowel incontinence is sporadic and completely depends on what I eat or drink I believe. I wasn't drinking a lot of water in Europe so found I was very constipated and didn't need to go as much, but the one time I had to go I really had to go and didn't make it, luckily it wasn't 'loose'. Sorry a bit detailed but that is how it is for us. Anyone who needs to check modibodi out as I refuse to wear pads!

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Thank you for those frank accounts of the problems you have been sharing about bladder and bowels. Let me recount some of my own embarrassing incidents that I have experienced over the last 25 - 30 or so years.

I am consoled in part by the fact that for me, (1) almost always, any bowel incontinence episodes are due to an attack of mild or severe diarrhoea, and (2) with a bit of self-management, these incidents don’t happen very often.

When I was working I had one just before I was due to give a presentation to a client. In those days I walked much more smartly and I could just about get to the toilet in time. On another occasion, I got an attack of severe diarrhoea just before I was due to attend a day-long seminar and had to leave immediately. I drove all the way home (200 miles) without stopping. The car seat and my suit were ruined and I paid to have the seat replaced.

So these things are unfortunately part of what we have to deal with.

My main strategy is to try and eat with enough fibre so that bowel movements are mostly on a regular routine - usually in the morning after a high-fibre breakfast. If I am travelling first thing in the morning then I just don’t eat until I can be somewhere near a toilet with a couple hours to spare. The other thing I try to do is to avoid putting fingers in mouth. Our hand are swarming with bacteria of one form or another, some of which can really give you the runs - like e coli, campylobacter etc. So I try not to chew my nails or inadvertently put my hands in my mouth. I try to remember to carry antibacterial gel to wash hands if finger food is being served.

None of this will guarantee that you avoid these bowel upsets but my experience is that it helps.

Some years ago I went through a whole series of bowel pressure tests at the National Hospital. They couldn’t find much except to say that one of my anal sphincters was weak. No surprises there then. The only solution offered was a bottle of syrup-flavoured Loperamide (sold over the counter under brand name Immodium in the UK). en.wikipedia.org/wiki/Loper... This drug essentially slows down the intestine like morphine, so stools become more solid.

Peristalsis is the mechanism by which food moves through the intestine and here is a useful video of how this works.

Bladder problems are largely under control. Male urinary plumbing being what it is, the urinary sheath and leg bag work well.

Finally, I had heard of another potential idea - the anal plug. It sounds a bit radical, but then I found this site devoted to incontinence support, and, on it, a whole topic thread for the anal plug. The specific device is the Coloplast Peristeen anal plug. See what you think. incontinentsupport.org/phpB...

Looks like a useful site.

The biggest problem with all of this is that I find myself being reluctant to travel much. I make excuses about travelling when really the worry is about having these problems on a flight or train. Maybe the anal plug is the solution?

Thanks for all your useful and honest accounts of how faecal incontinence has affected you.

Let’s keep discussing solutions.

Chris

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Yes, the incontinence is a problem for me as well, both bladder and bowel. The biggest challenge for me is that bladder urgency, and having to hold it to find a bathroom, brings on bowel urgency and the inability to hold it. I deal with it, to a point, by making my morning routine coffee and fibre rich toast and waiting for the need to have a BM and then going and sitting. Unfortunately a good portion of the time when I go sit the urge goes away, so I have to sit for a while and see if it will come back and if not force it to start and then it will often be a long time for it to "complete". I have regular bowel accidents, thankfully the majority have been at home. I where disposable underwear all the time now, because trying to deal with "soiled" underwear when not at home can be quite a challenge. Funny thing when I am having a bowel urgency situation I find that I walk better.....

Thank you for starting this thread to let us know we are not alone in the fight to deal with this as well!

Jeff

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Enjoying reading the comments here. Such honesty and gallows humour that I think can only come about from the regular problems we have with bladder and bowels.

Bladder I can't add anything here. I am so used to urgency problems that managing them has become a lifetime preoccupation. At least urine is aseptic and evaporates, eventually. And being male, it is a lot easier to find somewhere discreet if I can't fight the urge. This is the worst time of year: in the summer my sweaty, inefficient, walking means a healthy proportion of my body moisture exits through my skin and it is usually a battle to stay hydrated.

Touch wood no bowel problems at the moment. I used to be totally constipated and would have the every 3 or 4 day unstoppable event which required an urgent toilet visit. Funnily enough, I had been like this for the whole of my adult life and well before any AMN bladder or walking problems. I used to do a lot of running and that would regularly involve a dive into the bushes at some point. However, 3 years ago, I changed my routine and started working from home. Instead of waking at 5:30 and getting to work at 7, I now have the time to go first thing in the morning on an almost daily basis. I eat more fibre, usually in between meals (I eat a lot anyway), and this helps a lot. As does being reasonably hydrated and tolerating the consequent nighttime visits to the toilet.

Now the pendulum has perhaps swung too far: I now get frustrated and annoyed if I don't go every day...

Good luck everyone.

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I had another experience just today that I thought I would share while we are all discussing this topic. I left my counselor's office this morning and suddenly realized as soon as I got on the freeway that I needed to urinate, quite badly. I pulled into a fast food restaurant and saw that while the men's restroom was in use, the lady's room was unoccupied. So I'm standing in the hallway doing the "happy dance", all the while debating whether I should just duck into the women's restroom. Fortunately, the gentleman in the men's room walked out, and I burst in, not a moment too soon.

Sadly, experiences like this are exceedingly common in my life. However, it is somewhat reassuring that these experiences are in no way unique to me. I am glad that we are able to discuss these things so freely and openly. Keep the stories coming, folks!

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Reviewing this topic now. If the woman's restroom is available, I will take it regardless of the looks I may receive upon leaving. Having a cane silently informs one of other responsible issues.

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It is usually as I am walking to the toilet, I wet myself Just before I open the toilet door.

Anywhere, even public toilets. Just as I am walking up to the urinal.

One time I defecated in public. A 100%, complete, several days stored up bowel movement.

Nobody around, quiet street. Didn't bother me one bit. If I'd have been in the supermarket; on the train; bus, plane; at work; wherever, that would have been a different story.

I have told my doctor about all this. Just a shrug of the shoulders was all I got.

I suppose there is a reason for the massive growth of the adult diaper industry.

amazon.com/Tena-Classic-Adu...

Though, I've no problem with an anal plug. No worse than a suppository.

I seriously looked at electrical stimulation, though it works better on women than men.

webmd.com/urinary-incontine...

Years ago, I was a care worker for a disabled man. And me, now disabled. How about that?

He showed me "manual evacation", push on your stomach, left hand side works best for me. Keep gently pushing in all the way and manually pump the feces out.

I also do the Japanese style of squatting on the toilet (as does my 12yo son). It is the natural way.

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Me again. So a few things I find help me...urinary wise- I found a product called "Travel John" and I keep one in my purse and in my glove box and any backpack. It's a little folded up baggie with a plastic "urinal head" and it has a polymer in it that turns any liquid into gel with no odor. I've been known to pull over with my kids in the car, tell them to look away and ahhhhh...relief!

Now I can go to soccer games, road trips, beaches etc again and not panic if there's no rest room. Easier for the guys who can find a tree...but a real issue for women or people who can't move fast. I also have an arsenal of different pads and plan what I drink around my schedule. A beer? Drink it in line for the bathroom like a college kid! Lol

I did have my neurologist write a note saying that I need to have access to any restroom as needed due to a neurological medical condition. I have used that note twice to use a private bathroom at a store and it makes me feel better if I have to duck into an empty men's room in an emergency!

In the USA, it is an "ADA" issue.

Bowel wise- I tend to have pretty bad constipation with bouts of "OMG, gotta go NOW!" I laughed when I read someone else say jogging would make them leap into the bushes! (I can relate! But the jogging was long before the AMN diagnosis). Since I stopped nearly all of my medicines, the constipation has actually improved somewhat but still takes planning and I certainly can't take it for granted!

A probiotic every day, a magnesium supplement daily, prunes at bedtime, wake up and have a cup of coffee, then some warm water, then one more coffee. Relax and read a bit in front of my "Happy Light" (great for mood and energy!) and head to the Toilet at the first urge. Step stool under feet, quiet bathroom (hard w kids and a nosy dog!), massage belly...small circles with palm or fist starting on right side and following colon until things move.

But then the coffee keeps me running to the bathroom to pee afterwards for a good hour or more...it's a trade off.

If the urge dissipates when I reach the bathroom, I get up and walk around. If I keep sitting too long I just get numb dead legs and anxiety!

I have had to use milk of magnesia, other laxatives, and enemas, and yes, manual evacuation when necessary. I am afraid to travel because it disrupts my "schedule" and everything seems to fall apart 😕

Miralax and/or fiber seems to only give me terrible gas and bloating.

There are a lot more tips on the spinal cord injury sites.

I never imagined I would share any of this with anyone, let alone on the internet! I hope this helps someone...at least to not feel so alone. A hug to you all!

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Thanks everyone!! I’m feeling less like “odd man out” now. A problem from this week: my husband is in the hospital and, I’m sure due to stress, I wheeled to the nearest restroom after getting out of the parking building and proceeded to wet myself right from the waist to the knees. I limit myself my liquid intake when I’m going anywhere because I just don’t know if I’ll find a restroom in time. Thankfully, the restroom had both towels and the heated handdrier and I was able to layer my pants with it, another layer to sit on. Being over an hour from home, it’s the best I could do. I kept something in my lap all day to cover whatever might show ... thankfully, I wasn’t smelly!!!

So, when at the dentists last time, he asks me if I’m hydrating enough because the tissues in my mouth were really dry. I’ve known him for a very long time and could’ve confided, but didn’t.

I’ve been tested, poked and discussed this to death with 4 different docs. Basically, they say to get into the bathroom more often, like hourly. If I wait an hour and a half I’m sunk.

I am noticing that since I discontinued Miralax I have more sensation and, generally, more control. Bowels are easier to control, too?? How is that all possible?? Ugh.

I keep trying to be in control. I’m determined to not give up now that my sensations seem to be returning.

Again, thank you all for sharing!

JoAnn

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One other thing I forgot to mention. I got a prescription for medical cannabis oil recently in the hope of it helping with neuropathy and general pain, unfortunately it doesn't help for those things, yet with this THC:CBD concentration, and I'm not sure if I care for the "high" feeling, I'd had no previous experience with marijuana. But it seems like my incontinence is somewhat improved. I can't be certain as yet but it is an interesting side effect.

Be well and have a Merry Christmas all.

Jeff

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