Bladder and bowel probs - doctor's appointment?

[ScarletFaced]

Name changed for this because I am too embarrassed!

For about the last 2 weeks I've been having big issues with bladder and bowel control. I haven't experienced this previously and at first I thought maybe I had a stomach upset, but I don't actually feel that it is.

I don't get any warning when I need to "go", have to dash to the toilet and sometimes haven't been able to make it in time.

Very occasionally I don't feel properly till it happens - like this morning, I didn't feel the urge until it was already happening

I was kind of putting up with it till I realised I've been getting up in the night 5+ times to go, constantly having to run to the loo at work, etc. And it is getting me down.

Is it silly to book a doctor's appointment for this? The next one I can get is in 4 weeks anyway, so it will probably have stopped by then!

Is there something I can do? I'm so embarrassed and I feel like I can't tell anyone!

Do you have any other symptoms. I'm sorry but I might be MS. my mum had this she had numbness in hands and feet and bladder problems. Hope it's sorted soon

Read the OP's updates @Rizzoli123

Hello everyone,

Thanks again for all your messages of support.

I'm doing okay - feeling EXHAUSTED, just from the weirdness of the week really! I got a bit upset in the night because I had a really bad bowel accident and I had to clean up everything and I was just so tired and so fed up. Don't feel the loperamide is having much effect yet, but I will persevere and hope that things improve!

I have booked a week off work and will take it from there, I think. I have some appointments (MS nurse, mobility assessment and physio) so I will see how these go and what is suggested.

Nothing worse than having to clean up an accident in the night. Have you got some of the incontinence pads for the bed? If you have those and some extra sheets you could try making the bed in layers of incontinence pad, sheet, incontinence pad, sheet etc. Then you just need to take off the top layer and have a quick shower. It would be good to have a spare duvet handy to just swap out - you can check if it's clean in the morning.

These are really good. I have them.for my disabled son.

www.incontinencechoice.co.uk/bed-and-chair/washable-bed-pads-draw-sheets.html

The one with wings to tuck under the bed. I layer his bed. Plastic sheet, quilted matress protector, fleece from IKEA or a towel, brolly sheet, disposable pads ( you can get three for a pound in poundland or puppy training sheets work out chea).

Then in the night you can whip off layers añd get back into bed.

Good ideas and I'm going to invest in that, at the moment I've just been using the Tena pull-ups at night, but if it happens when you're lying down it doesn't work so well... Too much information, sorry!

P.S. I'm trying to put together in my mind some things I could bring up with Occupational Health at work but drawing a blank! I don't really know what's a "reasonable adjustment", stupid though that sounds!!!

For OH is there a disabled toilet at work? If so leaving some supplies in there. working from home when needed. Going home early to work from home if needed. How to make sure your boss or team lead knows without have to spell it out every time you have a flare up.

Then other things that are job specific like less off site trips and if doing any training courses staying in a close hotel.

Better chair and desk so less general strain. Try to think of everything. But who doesnt need a better chair at work 🙂 I guess it all depends on what you do the most, sitting, standing or walking around.

We have a disabled toilet on our floor, but the ladies is one floor up. Would asking if I can use the disabled toilet be a reasonable one?

Also we have quite a lot of meetings and going from room to room - that stuff I'm okay with, but I had to duck out of so many meetings in the last fortnight to run to the loo and I'm sure everyone thought I was insane.

Working from home when it's f.i. this bad would be a help. Not all day even - often not possible in any case - but even for part of it.

Dear OP.

Sorry you're having such an awful time. I have Cauda Equina and have issues with bowel and bladder and thought of maybe helpful for you to know what I now do.

I was also having accidents, and I've now been put on an anal irrigation system called peristeen. I use it daily and it flushes water through the colon clearing you out. It's not failsafe but my accidents have cleared up 99% of the time. I also use intermittent catheters - this sounds awful but it's not that bad once used to it. They are the same size as mascaras.

I don't know if these are the sorts of things available to you with MS, but I was in the same boat as you and they have improved my quality of life considerably.

Best of luck moving forward 💐

Sadly, and this will take some getting used to, you are now classed as disabled. Life is now going to be uncertain.

If you need access to the loo, then using the disabled loo is perfectly fine. I didnt need any adjustments to begin with, but have needed a couple of minor ones along the way (Im no longer safe on a step stool so am not allowed to use them but these have occured a long the way). OH will be used to you having changing needs, which include loos as you may not need one urgently if things improve.

You should also get a radar key from the bladder and bowel nurse or can buy online and if they dont suggest it, get one of these cards too, a lot of the MS community (myself included) use them:

www.bladderandbowel.org/help-information/just-cant-wait-card/

Their website if also has useful information which may help.

Were you also told you need to notify DVLA and car insurance? I still have them without loss of licence or increase in charge but they need to be contacted.

@TheBrokenMothership

Dear OP.

Sorry you're having such an awful time. I have Cauda Equina and have issues with bowel and bladder and thought of maybe helpful for you to know what I now do.

I was also having accidents, and I've now been put on an anal irrigation system called peristeen. I use it daily and it flushes water through the colon clearing you out. It's not failsafe but my accidents have cleared up 99% of the time. I also use intermittent catheters - this sounds awful but it's not that bad once used to it. They are the same size as mascaras.

I don't know if these are the sorts of things available to you with MS, but I was in the same boat as you and they have improved my quality of life considerably.

Best of luck moving forward 💐

I have been given an intermittent catheter as will be needing to use one, you are right they arent very big at all. Still have to trained to use it tho. Next month!

@Pericombobulations

It's far easier than you think it's going to be! Best of luck to you also 💐

@Pericombobulations

Sadly, and this will take some getting used to, you are now classed as disabled. Life is now going to be uncertain.

If you need access to the loo, then using the disabled loo is perfectly fine. I didnt need any adjustments to begin with, but have needed a couple of minor ones along the way (Im no longer safe on a step stool so am not allowed to use them but these have occured a long the way). OH will be used to you having changing needs, which include loos as you may not need one urgently if things improve.

You should also get a radar key from the bladder and bowel nurse or can buy online and if they dont suggest it, get one of these cards too, a lot of the MS community (myself included) use them:

www.bladderandbowel.org/help-information/just-cant-wait-card/

Their website if also has useful information which may help.

Were you also told you need to notify DVLA and car insurance? I still have them without loss of licence or increase in charge but they need to be contacted.

Yes, I was told that I need to contact them but that there's no reason I should lose my licence or have to pay a bigger charge. Fingers crossed! I haven't done that yet but it can be a task for next week.

It is very odd to be "disabled" now when I wasn't at the start of the week. Okay, I get that's not really how it is, but still!

In terms of work, mainly what I have come up with so far is:

• being allowed to use the disabled toilet (it's not even a radar key one so this is hardly a big deal)
• having more flexibility to work some hours from home, only if, as and when needed, with my line manager's agreement and where appropriate
• the nurse did mention that there can be keyboard aids available for people who have reduced sensation in their hands - but I don't think I need this
• I am pretty sure that my eyes and mobility are fine, although I will have a fuller assessment next week.

The can't wait card is a good idea (the nurse did suggest it and apparently I'll get a radar key next week) although I've found, from experience lol, that a lot of cafes and places are pretty decent about letting you use their toilets!

I'm supposed to be going to a wedding next weekend and I am a bit nervous about that! I don't know why... It's silly!

@ScarletFaced Im glad you dont feel disabled and really hope it continues, unfortauntely things like this pandemic put it into perspective, people with MS are in group 6 and classed as clinically vulnerable. I didnt have to shield but was aware of it more. You are also entitled to a free flu jab every year if you want it.

Your list for your OH sounds good and realistic. I hadnt heard of the keyboard extensions, I will have to google!

@TheBrokenMothership Thanks, the nurse did say its easy to use. Did help when I had my first appointment, she checked my bladder and asked me to go to the loo to check if I am retaining, my bladder refused to work at all first time and had to go back about ten minutes later, sadly this is my current new normal.

@Pericombobulations Oh, poor you, that sounds uncomfortable and not at all nice! But it's good that there is this option that can help - I can only imagine how uncomfortable it must be if you need to wee and can't!

I certainly don't feel like I'm in any danger of that at the moment...! The desmopressin is working well at night and I've started oxybutinin hydrochloride which will hopefully improve things during the day too. Apparently this can have the side effect of "decreasing gastrointestinal motility" so I'm crossing my fingers that this is going to be the case!

@ScarletFaced I'm glad they can offer meds and hope they work.

I'm ok, just waiting for my next bladder nurse appointment and see. Normally things work ok with bladder, but occasionally it gets shy, that and I have started uti problems last year but as I said to the nurse could be related to me being menopausal or the ms. They can take their pick!

Hi, I've been thinking of you and hope you are doing ok

I'm doing okay, thank you! I had a nice and relaxing weekend. I'm not feeling my best and brightest this morning because I had a very disturbed night (I woke up to go to the toilet a grand total of 6 times and 3 of those were "oops it's too late" scenarios). I'm using some of the strategies suggested by the nurse and the helpful posters here, but bowel accidents are so degrading and it makes me feel like a really disgusting human being!

You are definitely not disgusting! You are going through an incredibly tough time and seem to be dealing with it amazingly. If the strategies from the nurse don't start to work in a few days I'm sure they would want you to get in contact with them. I hope you've got some support in real life too!

You are not "a really disgusting human being" @ScarletFaced.
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You are an inspirational human being* dealing with a difficult diagnosis with fortitude and good humour.,

@ScarletFaced please dont feel disgusting, you really really arent. Its this awful disease, which no one would ever ask for.

Hope you are feeling more positive today, but take things one step at a time

@ScarletFaced, how are u getting on? I am going through a similar problems with my DS and it's so upsetting. We are waiting for scans (non emergency I think), have self-referred for incontinence products in the meantime.

Has any treatment made a significant difference for u?