www.incontinentsupport.org

This post might come across as a little muddled because I really don't know where I am at with things at the moment. I guess my main question is how those who need assistance with continence management get by- especially if they don't have a Carer/Pa live with them.

I got prescribed tena flex super a while back (local nhs don't do maxi). I thought this would be the best option for me in terms of still using the toilet but they leak fairly often. One big accident and it's through to my clothes or underwear - often properly soaking through visibly enough that I look like I have had a moderate sized accident. The problem is that nearly all incontinence products do this. The only ones that give me any hope of keeping my clothing dry are very absorbent nappy/diaper style products. But those style products present two main problems
1) they make accidents more likely. They take longer to get off and also I tend to wet as I stand up which is often the only way of getting them down.
2) they mean that realistically I need more care to change them. I can't always stand and I don't do a very good job of putting them on myself sitting or standing anyway. My condition causes extreme fatigue ability and I just can't manage that all the time.

Now, I'm not really sure what I should do anyway. I was taking vesicare at highest dose and then had Botox surgery which worked a fair bit in combination with the vesicare but nothing guarantees me no accidents. My continence has gone something like this
No meds - very severe incontinence and some sporadic retention. - multiple complete large full bladder accidents a day
Vesicare 5mg - full bladder accident roughly once a day
Vesicare 10mg - full bladder accident 1-2 a week
Botox and vesicare - variable full bladder on average every to weeks and less more often.

The above sounds like a fairly good result except for the fact that none of these outcomes have guaranteed pads keeping me dry. The Botox result was good but gave me a huge amount of uncertainty. I can't change my own clothing so what if I had an accident whilst wearing a smaller pad? Every time I leaked I'd be wondering if it would go through to my clothes or pants. It's no fun having to sit around in wet clothing until your PA comes in at 10pm or at best managing to get (only if wearing looser stuff) clothing off but having to spend the day in a pad with a blanket over you. So I found myself still wearing the tena flex again. It gave a little more reliability but still the same problem depending on the amount I leaked and it felt like what was the point in having the Botox if I was still effectively in nappies? This is also compounded by the problem that I cannot consistently use wipes and things like that.

So I have some big dilemmas at the moment. Do I have the Botox again? What do I do with my medication? I am seriously worried about the Botox. After the last time I had it I experienced a bad relapse effecting my arm function meaning that pressing lift buttons became difficult, doors got harder, eating got harder. If it progressed any more then independent toiletting and eating were not going to be possible. It took me a while to link it up but I think it was either the anaesthetic or the Botox. I understand rarely Botox causes weakness. The medication is giving me Side effects all of a sudden. Severe dry mouth, dry eyes, bad constipation (there since start).

If I had someone here all the time on hand to help then it would be easier. I could make a choice myself about risking wet clothes or wearing larger pads I might need help with. About taking meds or just going with the flow (pun intended). This is not realistic though. I doubt social services would fund live in care or all day care. Currently I have a little time tagged on for help with pads. It's just 15 minutes twice a day though. I've barely used it because I can't miraculously make someone appear when it is needed. I could push for specific visits for continence management but these would be at specific times. I would end up still risking wet trousers OR wetting a pad because I couldn't do it independently. One thing I've yet to try is the new tena maxi pull up pants. This would at least make it easier to do things independently...unless I have an accident and then I can't put a new one on and am back with flex or nappy!

Right now...you know what...sod it...I am fed up of surgery, fed up of meds and fed up of feeling inadequate because of poor bladder function. If I had never bothered seeing what would help then I would probably not feel so guilty about managing things without meds. I feel like without meds I at least know that my bladder function will be poor. It's more consistent...but where does that land me when it comes to care needs? I'm not going to lie thwt live in or all day care would be liberating in terms of help I need for other stuff too! It's so unlikely though because my toiletting/continence needs fluctuat so much (though less so when no meds) But then that voice pipes up and says it's vile and disgusting to not be trying to overcome these problems.

Anyone have any words of wisdom?

Sorry to her your delema tangerine,

Just from reading your post, I can only think of two options right of and neither are pleasant. First would be to find the most absorbent diaper you can find and change to it. Then the unpleasant part would be to make yourself use it throughout the day. Seems the people that have leaking issues come from "flooding there protection. The absorbent material dose not have enough time to soak that stuff up but if you go in small quantities, that may help the leaking.
The other suggestion is maybe you are at the point where you don't need to live independent anymore. Maybe you need to find a skilled nursing facility that can give you the attention you need. I know both options suck but you are in a tough spot and you do need help.

You know, thinking about it there may be one other option. Maybe you can manage with a Foley catheter?

I know they all suck but those are the only pearls I can offer.

Good luck to you

Tangerine,

Have you considered a suprapubic catheter? Using such with a leg bag would not guarantee dryness but would certainly make sure the bladder was pretty empty by continually draining it. Leg bags are easy to empty and, of course, an extra 2 litre bag at night makes sure you wake dry and have had a good sleep.