Hi all.. new here and nervous

[PB&J32]

Hi Drew, welcome to the boards. I have had issues for several years. I have OAB and interstitial cystitis, my bladder is in a constant state of turmoil. Anyway, I'm a 35 year old male as I see you are too. I can very much relate to what is going on with you. You are not alone and, though it sucks, there are ways to manage it. I think the consensus here on the ISC forum is that diapers are the way to go. Most of us have little to no luck with pills, some of us have found success with catheters as well, but those aren't for everybody. This is a great place to be with like minded people.

[justej]

Hi Drew. Welcome. This place has helped me so much. From travel questions to helping me find the right diaper for my needs. Im not too much older than you (Im 39) so I understand the embarassment. My incontince started after an accident where i fell and broke my leg in 4 places. Im actually about to have my 5th leg surgery on the 18th. Hang Im there and vent if you need to. Lord knows i have!

[tangerine]

You can't self refer to every one but some you can. Yeah I did a google search for my borough and 'continence service'. They were quite helpful. The second nurse more than the first. Never got quite good enough pads from them to be honest. First I had Tena slip which is a nappy style but I got the weakest one which is less absorbent than a pull up. After that I got Tena flex but apparently couldn't get it in the highest absorbency on NHS. I've had to pay for stuff at various points due to poor liaison. First i did intermittent catheterisation, then we added in meds, then stopped the cathing. I tried botox surgery which made me continent but caused health problems. I was out of the system then when the problems returned. Then I became bedbound and my district nurses just weren't sorting out pad prescription so I had to pay. Eventually I got a catheter and I keep a stock of self bought ones for emergencies. I don't know if I will go back to using pads /nappies. Guess it would depend on whether I still had retention, was well enough (and had enough assistance) for changes + if they prescribed something absorbent enough. Right now I'm leaning towards a suprapubic catheter though. Pads/nappies work brilliantly for many thoufh.


The best I've found in the UK for severe high amount of fast voiding is the Tena slip Ultima.

[RetiredRN]

Drew

Here is a link for a free sewing pattern of an adult diaper:

http://www.kaylasclothkits.com/

Scroll down until you find:

KCK One-One Size Fits all Diaper Pattern (larger sizes)

This will give you a PDF that you can print and then tape the pages together for a pattern. The file also has instructions on how to sew the diaper. I have made ten so far and will make others as time permits.

Make sure you get the right size pattern as this site also has patterns for baby and small child diapers.

[Drew81]

Hi Drew, welcome to the boards. I have had issues for several years. I have OAB and interstitial cystitis, my bladder is in a constant state of turmoil. Anyway, I'm a 35 year old male as I see you are too. I can very much relate to what is going on with you. You are not alone and, though it sucks, there are ways to manage it. I think the consensus here on the ISC forum is that diapers are the way to go. Most of us have little to no luck with pills, some of us have found success with catheters as well, but those aren't for everybody. This is a great place to be with like minded people.

Thank you. I'm glad to have found this little corner of the interweb. I'm hoping that my symptoms will disappear as quickly as they came but it's not looking promising so far.

Hi Drew. Welcome. This place has helped me so much. From travel questions to helping me find the right diaper for my needs. Im not too much older than you (Im 39) so I understand the embarassment. My incontince started after an accident where i fell and broke my leg in 4 places. Im actually about to have my 5th leg surgery on the 18th. Hang Im there and vent if you need to. Lord knows i have!

Thanks, It is rather embarrasing isn't it? Good luck with your surgery.

You can't self refer to every one but some you can. Yeah I did a google search for my borough and 'continence service'. They were quite helpful. The second nurse more than the first. Never got quite good enough pads from them to be honest. First I had Tena slip which is a nappy style but I got the weakest one which is less absorbent than a pull up. After that I got Tena flex but apparently couldn't get it in the highest absorbency on NHS. I've had to pay for stuff at various points due to poor liaison. First i did intermittent catheterisation, then we added in meds, then stopped the cathing. I tried botox surgery which made me continent but caused health problems. I was out of the system then when the problems returned. Then I became bedbound and my district nurses just weren't sorting out pad prescription so I had to pay. Eventually I got a catheter and I keep a stock of self bought ones for emergencies. I don't know if I will go back to using pads /nappies. Guess it would depend on whether I still had retention, was well enough (and had enough assistance) for changes + if they prescribed something absorbent enough. Right now I'm leaning towards a suprapubic catheter though. Pads/nappies work brilliantly for many thoufh.


The best I've found in the UK for severe high amount of fast voiding is the Tena slip Ultima.

Sounds like you've had fun with the NHS...! I'm hoping that if I have to see the local continence service that they'll be helpful.

Drew

Here is a link for a free sewing pattern of an adult diaper:

http://www.kaylasclothkits.com/

Scroll down until you find:

KCK One-One Size Fits all Diaper Pattern (larger sizes)

This will give you a PDF that you can print and then tape the pages together for a pattern. The file also has instructions on how to sew the diaper. I have made ten so far and will make others as time permits.

Make sure you get the right size pattern as this site also has patterns for baby and small child diapers.

Thanks, I'll look into it.

[B Brian]

That's true. If you have even half of your issues resolved, you will still need to be diapered all of the time because you won't know when the other half of the time will hit you. Add in the side effects, and its often not worth it considering you're still diapered all of the time any ways. (Note, meds do work for a limited few so they may still be worth trying).

Like most others here though, you'll come to realize diapers have been given an undeserving bad wrap by general society. Not only do people not notice you're diapered (even when it's painfully obvious to you), but most just don't care either. Add in that diapers allow us to regain our life and activity away from the toilet, and you'll realize they are life savers, not life enders.

[Drew81]

So, after an hour of searching this morning I couldn't find the details of my local continence service so I thought I'd go ask the GP surgery if they have the details.
I explained to the receptionist and she's made me an appointment to see the GP later today. Now I'm worried that the GP is going think I'm a fraud or something because I'm 'too young' to have issues (my GP's surgery have a history of being poor').

I'm going to go in with a urine sample in hand so they can test for a UTI and I'll explain calmly the problems I've had and see what they suggest, but I'm not holding out much hope...!

[tangerine]

Stand firm about a referral if you can though they might want to ensure no infection before they do that which makes sense. I was 22 when I developed issues so if they try and tell you you're too young, remember that you're not. Yes, it's a little more common in older people and in people with other disabilities, but that doesn't mean it's rare in young people by any means.

[B Brian]

I became incontinent at 18 and am 40 now. I also got a LOT of the old "too young" line as well. Though that has finally been tapering off.

Unfortunately it seemed like half of the doctors who told me this actually meant it and did not believe I was. They were the absolute quacks who did me no good. The other half meant it like an "I'm sorry to hear that", and wanted to push pills on me in an effort to "cure me".

Only ONE urologist of two or three dozen I've seen has been genuinely concerned and listened to what I actually needed done. Oddly he has never said I was too young for the incontinence problems I've had.

With this in mind, if your doctor doesn't seem attentive to your needs then get a second opinion. If that one fails too, then get a third. And keep looking for someone better till you actually find one. They are out there, you've just got to find em.

[Drew81]

I went and saw the GP last night. He listened thouroughly, asked questions, prodded and poked at bits and tested the urine sample for a UTI and Diabetes. The sample came back as clear thankfully for both UTI and Diabetes. At least that rules that out. He said he didn't think that at my age it'd be anything to do with prostrate and therfore thankfully he didn't examine up there.

He said because of my history of having had bedwetting issues since my teens and the now progression into daytime problems with little warning that it sounded like irritable bladder (is this the same as OAB?). He said he felt a referral to urology would be useful. He also said he'd speak to the continence service and see if they want to see me.
He's also given me Oxybutinin and suggested I cut down on caffeine drinks. It's all worth a try.
He also didn't seem fazed that I was in a nappy style pad. It's a good job I was as I'd wet myself on the way to the surgery.

What I didn't find out was what the next step will be. If I'm waiting for a urology referral letter or a phone call or just see how the tablets go. I was a bit overwhelmed and left there in a bit of a daze. I'll call today and find out what I should be expecting.