Pee problems and ALS

[Omar]

Dear mates,

I have problems holding my pee, does any ALS patient is experiencing this as well?

[Al]

Hi Omar. I don't have a problem holding it. Never have. I can sit for hours after the urge first hits me but once I decide to go and get within about 2 feet of the toilet , then I start to dance. I really have to go in a hurry then. I have no idea what causes that.
AL.

[Omar]

Yes Al I didn't mean problems peeing, but it seems that I have exactly what you have.
Once I am on my way to the toilet I go in a hurry feeling that I can't hold it anymore
sometimes I do even pee while I am still lowering my underwear.
Very weird but it seems that it is an ALS symptom so far. Lets see if other patients also have it
;) Omar

[CindyM]

I have that problem with my bowels. I read elsewhere on this board that this is not an ALS symptom but it is the thing that got me an appointment with the clinic. The Doc is talkling about doing an EMG on my splincher muscle! :twisted: As IF! Cindy

[patricia1]

you see urinating problems inMS I would go to a urologist maybe its your prostate PAT

[ltr]

I do not have als, but suffer exactly what Al and Omar do! When I have flare-ups of whatever my illness is, I will even have to run in the middle of the night and sometimes I am leaking by the time I get there. I even recall this happening before I was ill, so thanks for bringing it up because now it will be something I mention to my doc. You never know, it might be a clue for me! Leslie


Cindy - Ouch!!

[landscape]

I have that problem with my bowels. I read elsewhere on this board that this is not an ALS symptom ... Cindy

My husband has this same 'bowel urgency' (along with urinary urgency & frequency but that's due to prostate problems). It started after the generalized muscle weakness that was to be later diagnosed as ALS.
Due to the fact that loss of sphincter control is not normally attributed to ALS he is being investigated for cancer. However tests for occult blood (not a very reliable test) have been negative.

[quadbliss]

Hi Omar,

I have had that problem since shortly after my diagnoses. Now I wear a condom catheter, so it is no longer a problem.

Mike

[Rhonda]

My Dr. at Emory ask me at my first appt. If I had urgency problems when it came to using the bathroom, I didn't then and still don't. But after reading the posts it makes me wonder if it does have something to do with ALS.
Rhonda

[quadbliss]

I suspect my problem could be mental. It started about the time I had difficulty unzipping my fly due to hand weakness.

Mike

[CindyM]

Hi Mike-do you mean you fee more urgent since it is harder to un-zip and get ready? I kind of feel that with my bowels. If the bathroom is a long way off and there is a long line I am more apt to feel the urgency. But that's not the only time of course. Mostly I have no idea when to expect an "accident" of the nature that will require a full change of clothes, including socks and shoes. I now keep a change of clothes in both family vehicles and at work. When flying I book the seats nearest the bathroom and pack baby wipes, a change of clothes, and an adult diaper in my carry-on. It hasn't happened very often but once every three months is too often for me! Cindy

PS: I have been cleared for cancer, polups, IBS, and any other of the usual suspects. I think it is weak muscles.

[lunarruna]

Urinary urgency is a well-known (I thought) symptom of ALS. My husband went it through about 3-4 months and it did end. There are drugs to treat it. (But who wants to take another drug...) We went to condom catheters and leg bags too.

a video clip on here-- http://www.alsa.org/patient/drug.cfm?id=646 (I confess I didnt watch it...)
Beth

[quadbliss]

Hi Cindy,

Ya, that is exactly what I mean. I have also had a few accidents like you describe. Luckily, I have always been at home when it happens. I don't have to clean up the mess, it is very disruptive.

Mike

[patricia1]

I have read and was told that the one thing that isnt part of als is incontinence. So I think it may be a mental thing, I worry about that when I go out because I have weakness in my hands and if I am alone I wont be able to manage alone in the rest room So before I leave I go to the bathroom Pat

[anne]

Thank you lunarruna for the video clip. It was very informative. Anne

[Mike27]

Hi guys,
I think you're exactly right, that it's a mental thing.

I know if I need to go, my mind starts racing through all the worse case scenarios (What if I can't find a wheelchair stall, what if I don't make it etc) and I freak myself out.
I can feel my breath get short and my pulse race. I got myself to a point where I was so nervous (and focused on me and my problems) that I didn't want to leave the house! Missed a couple of school concerts, my daughter's dance recital...(I'd swear right now, but no.)

What I've started doing is tellling myself, what's the worse thing to happpen? If your prepared with a "Go-Bag" like Cindy, aside from a little embarassment, everything will turn out fine. The city won't collapse and the world won't end. Basically, I'm trying to keep my damned ego in check!

I figure if I can psych myself out of a behaviour, I can probably psych myself back into a behaviour. I've been taking small trips out and built up from there. I feel fairly confident about going out now, though I sometimes get a pang of anxiety.
It's probably alot like a reformed smoker getting the 'urge to light up' every now and then.

My advice would be don't wait. As soon as you fell the need go, then find a washroom. It's not like before anymore...before ALS, I mean. We have a few obstacles to navigate now, so we need a bit of a headstart!
I would even try to go every hour to 90 minutes whether you feel the need or not. A bit of a proactive approach.

Good topic! Not the best thing to think about but very real!

Cheers!

[Omar]

Hey guys,

I don't think it is a mental thing because I have had that problem a year before my diagnoses, and at that time I didn't have any muscles weakness in my hand or feet.
I also remember that when I went for the first time to a Neurologist, one of the questions was
whether I have the bowel urgency or not. Now I am peeing every now and then so the problem is less but still sometimes I fly to the toilet but the hardest thing is when I am already in the toilet without any bowel urgency and out of a sudden I feel like I need to pee even before unzipping my trousers. I don't know it could be mental but it could also be that the nerve that gives the order to the muscles to open or to hold on a little is not 100% working.

[CindyM]

I think the senstation is real and the urgency is due to general muscle weakness but once we know this, or have additional time-consuming tasks like chairs or uncooperative fingers to manage zippers, then the anxiety over that causes MORE urgency. The first think I do when in an unfamiliar setting is scope out where the bathroom is. Malls are the worst because around here they place the restrooms far apart, and there is always a long line.

But I have a question for anyone with bowel urgency. I'm looking for tips on how to handle "gassy" situations. Sometimes I run to the bathroom only to discover that it was just air. Other times I should have run because what I thought was air is now a mess. Other than watching my diet to avoid food that make my tummy rumble, I haven't found any other solutions. Cindy

[Mary Helen Barr]

Those concom catheters made all the difference in the world to my father (and actually, to me, the main caretaker). It would be nice if there were something like that for women. He was always telling me "I'm not incontinent, but I just can't get to the bathroom in time". Well, whether it's incontinence or not, the end result is still an accident. So, he's been wearing the catheters for about 9 months. It means I have to put one on him every morning, but it's been a huge help. If he has to go out, he just doesn't drink anything for a few hours before. If considering the catheters, I would get the non latex ones. Even though he never actually had a latex allergy, he does in that area of the body. Why mess with latex when there's an alternative? Constant contact with latex in that area gave him the allergy--symptoms were terrible.

[ltr]

Cindy - Have you ever tried those strips that you put on your tongue and they melt? I am pretty sure they are Gas-X. My son tried those because he has an incredible gas problem. He also started a process of elimination and found that he is pretty sure it is due to milk products.

[landscape]

I appreciated the link to the video clip, Lunarruna. It may well explain why attempts to reduce my husband's urinary frequency/urgency by considering it to be a part of his long term prostate problem has not solved anything. We'll check out the spastic bladder possibility & the meds.

Re: the 'bowel urgency' problem: My husband doesn't have any way of predicting whether it's merely a "gassy" situation, Cindy. These days he can't take a chance. The danger of a major clean-up always lurks. A routine helps but it's the gut that rules.

[CindyM]

Thanks so much for the support. I was beginning to think I was the only one! Thanks for starting this thread, Omar. As for not knowing the difference between gas and the real thinkg, there are times I have taken the day off work, thinking I was up for diaharea all day.

Now that I have lots of doctors in my corner it is not such an issue explaining to my employer that I have yet another case of "intestinal flu." It also helps to regulate just the correct amount of roughage in my diet. too much and we're in trouble, too little and, well, you get the idea. Cindy

[Barbie4]

My friend had this same problem about 6 months into her diagnosis. She couldn't hold it and it was awful for her. Some of the time she didn't make it to the washroom. It lasted for about 2 months or so and then it abruptly stopped and she has been fine since. She thought it might have been from the baclofen, the muscle relaxers that relaxed her too much. I am glad that it has ended for her though.

Barb

[sdsyd]

Hi guys-

It could be what is described as " anticapatory incontinence" if I remember correctly it has something to do with the central nervous system kicking in before the nerves and muscles have time to respond, which in the case of ALS could make sense. Its crazy all the posts on here about the things that others say " You don't have ALS if you have urinary or cognitive problems" I really think this forum could change the diagnostic criteria for ALS.
To make light of things I always have to add some humor ( hopefully no-one finds it offensive) a PT I used to work with specialized in urinary incontinence and she made up a little jingle about it. " Does your bladder hang low- do you dribble when you go?" - to the tune of Do your ears hang low? tee hee ha ha. I thought it was funny, and so did all of her clients.
GNight- and prayers for all of you!!!!!
~Cindy

[olly]

bladder problems could definatly be related to als. the reason being in umn desease spasms can effect the bladder. this is common in hsp/pls but doctors thought it was not a diognostic symptom in pls till recently when more and more pls patients complained of this,now the sp foundation have changed there information to include bladder problems in pls. as als includes umn involvement bladder problems could be related.
i have had on/off bladder urgency through out my illness, i get really bad spasms in my groin area sometimes and constantly feel the need to go to the toilet when i get them. rarely if i sneeze/cough i have incontinance,thankfully i am home most of the time. i do have very bad hip girdle weakness so maybe my bladder is weak due to the spasms.
i have just got a new raised toilet seat but dont like it ,it is cold hard plastic not like my comfy padded one,very uncomfortable.
take good care
caroline:-D