Continence Team and Product Choice/Absorbency

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Hey folks - had a consult with a continence nurse which was super helpful. Got some exercises to be getting on with which may improve my bladder control. She was very helpful but rather unhappy with my choice of product (taped slips) and how often I was changing.

She said I shouldn't be wearing nappies (yes, she didn't beat about the bush with what they are!) at my age (30) and should look to more age appropriate products like the pads you put in regular underwear. Now, I explained that I used to wear guards and pull ups pre LC/FND but even back then found that the guards didn't offer enough protection and the pull ups didn't protect against IBS flare ups (and were a nightmare to change when out and about). I also said that, even when I was just mainly dribbling, the wetness indicator on the Tena nappies would be set off regularly. I also tried Depends pull ups post-LC/FND because they were readily available on my online grocery shopping but found them next to useless.

She also said I shouldn't be changing so frequently if it's just urinary accidents as the absorbency on the Tena slips should be enough that I could have an accident and it be fully wicked away and pointed to the absorbency. Now, it's a common thread on here that the technical absorbency doesn't mean much. My rule of thumb is if I feel damp, I'll change for my skin health. Indeed, the times I've had rashes it's because I haven't changed quickly enough. My main products of choice nowadays are Tykables Cammies and Rearz Rebels (like the fact the prints are more 'adult' as it were) which are really high absorbency but I'll still change after a big accident. I've also found that it's only by using a booster in them that I can be confident they won't leak.

I suppose, ultimately I found her comments rather odd. Sure, it's not brilliant at 30 to have to wear nappies but equally, I don't want to leak and it's more embarrassing to be going around in smelly, wet trousers. I guess she's just never come across a young(ish!) adult who has severe problems like this. No medical professional's batted an eyelid and in hospital a nurse had to help me change who was very matter of fact about it. I mean, if I could use more discreet products I would!

 

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I'm with you on preferring to be overprotected than underprotected. While I could get away with heavy pads, they are more visible under leggings or jeans and don't have leak guards. My problem is mostly dribbling but I have more anxiety about leaks when I use pads than when I have a thin pull-up. Also being young (35) it is a struggle to choose, basically fashion versus comfort and ability to relax if you have an accident in public, not worrying that you might be leaking onto your pants. Glad to not be alone here being young and struggling with this condition!

 

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Wow sounds like she needs some more education on the topic lol. I am 31 and wear the taped diapers/nappies 24/7. I have been wearing them since I was about 22. I personally have 0 control over my bladder though, and highly unlikely to ever regain control of any type. Personally if you want to change after a single accident then do it. It's your skin health not hers after all.

 

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Young here as well and too like tykables. They fit my need and her comments seem very out of place.

 

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Sorry you had that experience. Her comments are out of place, people in her role should never be judgmental.

 

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Thanks for the replies guys. In some ways I can get where she was coming from - I think she was worried about my self confidence/mental health but to be honest, I'd rather know that a leak wasn't likely. I think what she didn't get though was that the embarrassment of wearing a nappy is a lot less than the embarrassment (and practical headache) of having a big accident in public and needing to change clothes. Plus, being a wheelchair user, I REALLY need to be sure I won't leak as I don't want to leak on my seat.

@Sarah060486 That's why I switched to pull ups way back when. I found it'd often go on a bit that wasn't protected by a pad, defeating the object of using them. Then I'd find changing awkward so would start out in a pull up and then change into a taped nappy. IBS flare ups and the fact that it was cheaper to buy in bulk meant it was cheaper just to go for the taped products all the time.

@Draconic - Yeah, I found her comments about changing to be odd. Wearing the same product for too long, even if it isn't too damp, can cause skin issues. My Mum's always on at me to change regularly. My only conclusion is that it's because you are only entitled to a certain number of free pads on the NHS (which aren't that absorbent to be blunt) so she probably couldn't say to change more often. I think unless you've had to use products yourself you don't really know how it is. Plus, as this place shows, different products work for different people.

@wetdad Yeah, I like the camouflage print - less of a vibe of 'old people in care home'. I had issues with tape quality control a while back and stopped using them but they seem to have fixed that.

 

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@JohnKane01851 Thanks. I think it was less of a judgemental thing - more she didn't understand the extent of my issues and was worried about how I was feeling about it. The times I have worn lesser protection around the house, I've ended up regretting it. I think the bottom line is very much that unless you've had to use incontinence products, you don't fully understand how unabsorbent and prone to leaks some of them are.

Kind of reminds me of this occupational therapist that came to the house - I explained that I was miserable at being stuck indoors due to the lack of accessible transport and that whilst there were technically some, often they were unavailable so you were stuck with their schedule. She then emailed me a list of accessible taxis - I thought, sure, you try calling up and booking an accessible taxi to the train station now.

 

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What a n ignorant judgemental comment from someone in the specialist Field

Hope the exercises help

Absolutely change to feel clean and keep skin comfortable

 

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Sorry you had this experience @Sci_Fi_Fan.

It is disappointing that a continence nurse would tell you to stop using a product rather than advising on products that may be better than the ones you currently use.

It is even more disappointing that a nurse working in the continence field would expect you to stop using a product that was working for you simply because it wasn't "age appropriate".

There is so much shame and stigma involved in needing to use continence products in the first place, I would hope that most continence nurses would be more sensitive than this.

 

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@Maymay941 Thanks! Yeah, I always try and change ASAP when I'm at home (which sadly is 99.9% of the time now!) for skin health as when I'm out it can be a while.

@Phil6003 Yeah, she didn't seem to grasp that anything less than a taped nappy just wasn't cutting it. I also explained that even with the Tena Ultima I had to use a booster pad to avoid leaks. I think part of the issue is that pre LC (IBS bowel accidents aside when I had flare ups) it was mild accidents and after dribble which then turned into pretty much total urinary incontinence post-Long Covid/FND and she didn't seem to get that things had gotten worse and they were two separate issues. However, even back then I ultimately ended up switching to the Tena Slips as changing was much easier and the added protection put my mind at ease.

I think it was frustrating that I was being dissuaded from using a type of product that works and, having tried more discreet options, concluded it was the best for me. I also found it odd she refused to send me samples of the highest absorbency taped product they had and even then it was only after saying I'd try the lighter option. However, if even the Tenas don't work without a booster, I fail to see how an affixable pad will, especially as pull ups don't work for me.

I feel the bottom line is that it's all about what makes you feel more comfortable and confident. In terms of 'age appropriateness' I find the skull and crossbones and camouflage print nappies I use to be more in keeping with what someone of my age would wear on their regular underwear than other things and I like that some of my personal taste is able to come through.

My main aim was to get some cloth backed ones from them to use when I do physio exercises to cut down my monthly cost and that seems to have happened so that's a positive. Hopefully the exercises will help as well. I'm just surprised she didn't figure that if I could wear more discreet products I would!

 

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So bit of an update in that I received the samples today and wasn't impressed. They sent me the wrong size and the products really weren't absorbent enough - after one wetting (which wasn't that big relatively speaking) it was completely full and was really uncomfortable - how I'm supposed to sit in that for hours on end before a change I don't know. They were also the belted ones rather than the regular taped ones. I never got on with the Tena belted ones and they didn't provide enough protection against bowel accidents.

It seems as though Molicare are phasing out their taped slips though so that doesn't bode well. It frustrates me no end that the regular brands push discretion above all else (as did the nurse) when going around in soiled clothes is hardly discreet. With the right clothing choice anything can be discreet. I think my needs are pretty simple really - I need hook and loop tapes so I can refasten them if I make it to the toilet in time and enough protection to protect against big bladder and bowel accidents. With decent boosters the Tena Ultima have actually been working fine when I've been doing my exercises. I was hoping I'd be able to get the same (albeit Molicare because that's who they have an agreement with).

On the one hand I feel like a bit of an ass complaining because I'm aware we're lucky in the UK that the state provides products for us free of charge. On the other, it's frustrating that my needs weren't listened to by the nurse. It's important to feel comfortable and confident. I think I'm just going to stick to getting my own for now if there are no taped slips available. With my urology appointment and neurology rehab incoming hopefully I'll be out of nappies soon, or at least greatly reduce my usage.

 

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You are a proactive person who doesn't let the system stop you from moving toward your best results.
It would indeed be uncomfortable and not effective to have a product that leaks on your clothes and is uncomfortable and soggy so fee is a non descriptive term.
The skull and crossbones or camouflage design sounds like a clever classy way to keep your spirits up.
A loop and tab system would be a great transition garment for people who are working on regaining continence and getting to a toilet with a chance of success.

 

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@Maymay941 Thanks! I'm just so sick of dealing with incontinence at this point and indeed, sick of dealing with medical professionals that don't get my issues.

 

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I’ve ordered some samples of the higher absorbency products in a medium and I’ll see if they’re any good. I think in the correct size and absorbency they should be like the Tenas. They’re not belted but they just seemed like that because they were stupidly big on me - you’d have thought she’d have asked my waist size. She did ask what size underwear I used and I explained that regular underwear I’m a large but take a medium in pads.

The insert pads aren’t great as they don’t even stick in and the Molicare boxers are gross. How that’s supposed to help my confidence I don’t know.

Hopefully the other products will work but whether they’ll order me any I don’t know. Still, with the right physio my issues should be a lot better so hopefully I won’t be needing too many products going forward anyway.

 

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Good hope you have physio soon

 

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@Maymay941 Thanks - here’s hoping! Would be great to be able to cut down on my product usage (and ideally not need them at all!).

 

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Until the need for product is over skull and cross bones and camo are meeting the problem with humor and style