Spasticity, incontinence, constipation, and that.

[monkeybus]

I went for a week without a bowel movement. Plenty of bran, stayed hydrated, etc, but no joy, so I took some laxatives. Ahhh.

But then days went by, close to a week, had to take them again, ended up being dependent on laxatives for about three weeks. I honestly thought that was my future, and I wasn't that concerned. I feel so much better when I go, and as I have said before, it eases my spasticity, so I was resigned. What is another load of pills on top of what I am taking?

Went travelling with family. Was in France, the problem with laxatives is if I am not ready to hit the toilet whenever I am told to go by the pills, I will mess my pants. Being unemployed, this isn't an issue, unless one of the family is in there, but being out and about is a nightmare. So in France, I low doses, low doses that barely worked. Went to the toilet twice, maybe three times in two weeks.

Then, i was in London, visiting the folks and the constipation magically lifted. I could go, and every day. What a result. See? Simple pleasures. I don't ask for much.

A week later, I took a long-haul flight to Hong Kong. Didn't sleep. Never do. I hate every minute of flying, and it terrifies me into the bargain. I wet myself on the plane. Happened before, back in my drinking days whenever I was drunk or hung over, so I wasn't concerned. I put it down to stress and waiting too long.

Then after I arrived (I was awake for well over 24hrs, by the way), I would be sat, watching tv and I'd be seized with the urge to urinate. Run to the toilet, and I'd always wet myself on the way. And I am talking about a six-metre walk (run/crawl), my legs were so weak as well. Literally couldn't stand. Had to crawl in the house.

I woke up in the night (twice), dying to go, and I'd wet myself. For about a year prior to this, I would wee about six (max) times per day. I'd wake up and wait an hour before going. I was worried about damaging my kidneys, but my doctor said I'd be OK.

Again, I was resigned. I thought, "Oh f***, I'll have to start wearing nappies now.". It has come to this. But I wasn't that bothered. I have bigger problems, a nappy, so what?

Two days this went on for, then it stopped.

A decent night's sleep or two, some proper, non-airline food, and I was back to "normal".

I have posted before about, as bad as I think I am, it always gets "better". Better, as in back to being simply bad. Spasticity, weakness, pain, neuropathy, toilet issues. Never lasts. Though, at the time, it feels like I am trapped in a waking nightmare.

Be well, folks.

Monkeybus, out.

[jolocny Volunteer]

Amen!! I have the same troubles - right now, in fact. Waiting to go, if I don’t then the laxatives come out. Currently, and the last few months, bowels have been terribly hard to make matters worse. I’m drinking lots of fluids.

I’ve worn incontinence pads for years, have graduated to the maximum level. All I have to do is get through the bathroom door and I go. SO much friggin fun! That comes and goes determined by my stress level. I always know when I have to start letting go of the stress. Can be easily remedied but a problem until I can.

As you said, back to being simply bad! This I can handle!

I’m envious of your travels! We don’t travel that much anymore. Between total retirement - getting used to each other and the money flow of it - and hubby nervous about possible troubles, it’s trips by conversion van. But it’s good!

Everyone ... take good care of yourselves!

JoAnn

[COwithAMN Administrator AMN EASIER Volunteer in reply to jolocny]

We don't travel a lot either, so I know how you feel about that JoAnn. And it's interesting how we affect spouses/loved ones. My wife is more nervous than me about "bathroom accidents" - I have become used to dealing with them, though I don't like embarrassing others. And it's a subject that is hard to mention to other than very close family. We don't like them feeling uncomfortable - but I think we have to try and educate others. The fact is is that bladder and bowel problems are on the increase, with ageing populations everywhere. I read somewhere that the sales of adult nappies in Japan is greater than babies' nappies! We are obviously not alone!

Chris

[COwithAMN Administrator AMN EASIER Volunteer]

Wow that's quite a tale, and one that many of us must have also experienced.

I can also vouch for how some trauma can really upset normal body rhythms, and in particular, bowel rhythm, This has come home to me a lot in the last year. In June 2018 I had a bad accident - broke a femur. Two months in hospitals, heel sores for six months, various other interruptions. My bowel upsest started in in hospital - of course - drugs, constipation, then incontinence. It has taken more or less a year to get back to some normality, and it has taught me how important a normal rhythm is.

I have also found the best way to deal with bowel incontinence is cheap underwear. If it happens, rather than trying to take them off, I cut them off. Carry spares with me and scissors. I have found cheap knickers on Amazon for £2 a pair. Of course, the real menace is diarrhoea, but it's hard to plan for that, other than to take Immodium before travel.

Re bladder, I gave up on leakage pads a few years ago. Finally adopted Conveen urinary sheaths - saves a lot of bother. Plus self-catheterisation, twice a day.

Glad you are back to normal.

Chris

[mariagno]

I find Oxybutynin gives a little more time to recognize the full bladder before being overwhelmed. There are lots of anti spasmotic bladder medications and if your are having accidents you should be on one.

Oxybutynin also helps keep the bowel regular. My doctor says relaxing the colon can help with that. I do notice a difference on and off the medication.

I find melon with high density of fiber and water is good, too. Watermelon, honey dew, or cantelope is great. Bran requires fluid to make it work and can make things worse.

Finally, I use a foley catheter when I fly with a urine bag. You have to be willing to insert and pull it out but it eliminates the worry of getting to the bathroom, getting stuck on a plane, or anything else. Ask your doctor for UTI antibiotics as a foley can commonly create an UTI.

[SongStream]

<sigh>

Monkeybus, your post hits too close to home right now because I have been having irregularity for almost 2 weeks. This with being fully hydrated (urine stream should be transparent or close to), adequate fiber intake, exercise, diet and the daily use of an osmotic-type laxative. Fortunately, Mybetriq has been helping me with continence but when on long unpredictable drives, I wear a nappy. (I love British speak. I will now use this word instead!) Now, spasticity is a chief complaint. Would you believe upon rising in the night to pee, I always do hamstring and other stretches before and after? In the morning is when it's most challenging. I am the tin man in the Wizard of Oz calling out for"Oil".

Okay, changing course but has me thinking: How does one know with AMN (or other spinal conditions) for symptoms of colorectal cancer? Most notably, a change in bowel habits, such as constipation that lasts for more than a few days and a feeling that you need to have a bowel movement that is not relieved by doing so?

<sigh>

Note: I also admire your travels! You're like Mastercard, so worldly (so welcome). For me, flying is concerning because upon landing, I'm afraid of not being able to walk (even to the loo on the plane) due to the spasticity.

[wilburlois15]

As you say, things always get better, and they do! The human memory is remarkably good at discarding memories of pain and discomfort, so it's probably good to write down this stuff because at some point in the future you'll have forgotten this low point.

My bladder and bowel issues have been interestingly affected by the MIN-102 medication. The main side-effect is water retention, which is most obvious with my swollen ankles in the evening and also the extra 10kg I now carry around. In the mornings, my ankles have shrunk back to normal, partly because lying down allows the water to redistribute itself around my body and partly because I urinate all the time. Probably 5 times a night at the moment, some times more and often with volume. Fortunately, the toilet is mere metres away from the bed (en-suite) and I get back to sleep very easily.

On the positive side, I am permanently well hydrated and this means that I poo easily and daily about 1 hour after I wake.

Good news/bad news. Not exactly sure how this will all pan out once the trial is over and if the medication stops.

[tieaknot]

I think you hit close to home for many of us. I think the bowel/bladder issues are a big part of why I dread traveling...not just the inconvenience but anything that alters the routine...even a drive, can make me miserable, especially when it comes to “regularity” or lack thereof.

My grandma always used to say (as she ate her prunes) “the best way to start the day is with a good bowel movement!” And I used to laugh at her. I’m not laughing anymore! And smile as I eat my prunes and remember my grandma. It really can make or break the day, week, month, trip!

I do wonder why it tends to get worse and better, sometimes with no cause?!

There have been times I am sure I must have an obstruction or something but then a month later things might be back to “my normal” and I get so relieved. I too feel like the laxatives and “extreme measures” are my future from

Now on. For me, there are oftentimes when strong laxatives don’t even work!

As for bladder stuff, I am a fan of Botox! I was so scared to try it but I have had 2 rounds and although not perfect, it has really helped. I just get it at my doc office and am in and out of there in 30 min and can drive home (she doesn’t use any sedation or anything and it’s fine). First time the lowest dose gave me about a month or 2 of some improvement. The second set (stronger dose) has been helping for a good 3 months now. I plan to continue it as long as I can! I haven’t had any problems with retention which I was really afraid of. I might try to get some more mybertriq samples to cover between treatments, but my insurance won’t cover it.

Good luck everyone. It’s so nice to be able to talk about this stuff with others who understand how much it can impact our lives. My kids actually laugh if I come downstairs and am smiling. “Mom...did you poop?! Hahahaha”

Oh well...such is life!