Continence issues

[Michvw]

Hi my husband has just been diagnosed ( I say “diagnosed” but consultant unable to say this as he meets, at the moment , only 2 of the 4 diagnosis criteria! Can only say “ MND is what we are looking and what we need to plan for”)
I am concerned because for some months my husband has had issues with extreme sudden urgency in both bladder and bowel emptying (at different times) which is extremely embarrassing and inconvenient as he tries to continue to work. Is this a “normal” symptom of the disease or is something else going on that needs investigating? ( He obviously feels he has been literally investigated to death!)
Thank you in anticipation of information.

[mickmac]

Hi Michvw

Sorry to hear about the diagnosis. With regards to the bladder problems it's generally recommended that you get a catheter. I have a urinary catheter and after a few days I don't even notice it anymore. A lot of people on this forum recommend a supra pubic catheter and you should speak to your doctor about this. There is also an external catheter that goes on like a condom but it has an opening at the end and any urine just drains in to a bag attached to your leg. The advantage of this is it is not invasive. You can talk to the doctor about the options or a nurse from the mnda association about which is the best way for now and you can change to other catheters in time if the mnd progresses.

I can't recommend any thing for the bowels as I haven't had to deal with that yet.

Mick.

[Terry]

Hi Michvw and welcome to the forum;

Sorry to hear about your husbands probably diagnoses.

Mick gives you some good advice about bladder problems. It's probably worth trying the condom type things to start with, they are called "Conveen" and many areas have a nurse that specializes in this. Generally Mnd doesn't affect the bowels or the bladder earlier on and urgency issues might be a sign of a enlarged prostrate or something else.

Like Mick, I can't help with bowels much. Nappies are a obvious answer but they are not dignified etc. Might be worth looking at his diet and possibly modifying it. You can get a electric pulse machine that is supposed to strengthen the muscles that hold it in. It's best to get specialist help for these matters.

Best wishes, Terry

[MNDConnect]

Dear Michvw
I can understand how frustrating this must be for your husband and yourself, not knowing whether your husband will be given a diagnosis or not.
Because double incontinence is not a usual early symptom of Motor Neurone Disease (MND) the Consultant is probably being very cautious about giving a diagnosis and wants to watch the progression of your husband’s symptoms.
Incontinence can occur as the disease progresses because as the mobility becomes affected this may make it more difficult to reach the toilet in time.
Abdominal muscles may also become weakened which can lead to constipation which in turn can cause diarrhoea. Changes to diet can also cause bowel incontinence.
It is difficult to say what may have caused your husband to have bladder and bowel urgency, but this is not a usual symptom of MND and needs further investigation.
Has your GP referred your husband to the continence team? They may be able to help with practical suggestions on how to manage his incontinence.
If you have any further questions, please do not hesitate to ask.
With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[Michvw]

Thank you so much for all your advice. Think he needs to see his GP again to get things checked.

[Ellie]

Hi Mich and welcome to the Forum.

Sorry your husband has a 'kind of, maybe' diagnosis of MND and has this embarrassing, distressing issue which must be really getting him down

As Jacqui said, incontinence is not typically associated with early stage MND. Both bladder and bowel sphincters can be affected in ALS & PLS, but in ALS, typically not until late stage, if at all. Meds and diet can also cause urgency but typically, either bowel or bladder, not both.

Because he has urgency/incontinence in both his bladder and bowel functions and obviously has some neurological issues which lead him to this tentative diagnosis, it warrants further investigation to see if nerve dysfunction has a role in the sphincters failing. It may even help to shed light on a diagnosis...

In the meantime, getting in contact with an Incontinence Nurse is a good idea - as well as physical interventions, he might find there are meds which will help him.

Wish you both all the best.

Love Ellie.

[Mazswann]

To all the girls out there! I’ve just been on course of antibiotics for a Uti ! And a week free of ANTIBIOTICS the Uti has returned. My MND specialist put me on Doxazosin 1mg and it was working perfect. Then went into have peg fitted and caught an Uti in hospital .so that’s when I was back on antibiotics . Why does it keep returning, and does any other girlie out there suffer to ? .maz x

[matthew55]

Im 56 and retired. I have a full urinarey catheter and wear pads. I still use my loo but it is impossible to tell if that feeling is solid or wind so better safe than sorry I say.😉😁🤗😍xx

[DeeH]

matthew55

I think Billy Connelly had something to say about not being able to trust farts after a certain age, he says it better and funnier.

Husband has same issue, can't tell difference. Just uses the commode when feeling comes.

For others information re catheter. He uses a pee bottle as there is some urgency between feelings to need to pee and going.

The look of horror on his face when total you want to put a tube up where!!!!!

I did mention the condom option but pee bottle is ok for now.

[matthew55]

It's a lot simpler and totally pain free and the freedom is wonderful, sticking a tube in it I mean.😉😁🤗😀xx

[Ellie]

Sorry to hear you've been through the wars with UTIs Maz, on top of having the PEG procedure - not fun...

... Then went into have peg fitted and caught an Uti in hospital

You can't really "catch" a UTI - unfortunately with MND our risk of getting a UTI is increased if we cut down on our fluid intake because our swallow is poor and/or trips to the loo are often such a palaver, which also increases the risk of kidney stones; our bladders don't empty fully because we're constipated and the full bowels are beside the bladder or an enlarged prostate in men; poor manual dexterity may mean less than perfect wiping.

Hope this round of antibiotics work well and, now that you have a feeding tube, you can safely take in lots of water, which will hopefully help prevent future UTIs. Women get more UTIs generally than men because the female urethra is shorter, bacteria don't have as far to travel.

It's no harm to take probiotics for 10 days after your course of antibiotics is complete to kickstart your gut flora, as antibiotics destroy good bacteria too.

Love Ellie.