6 replies to this topic

[CareMomOH]

My 23 year old son, Mike, became a para in aug. 2008 - T12 Complete. He self caths but has been dealing with leaking for the last 6 months. He has had many UTI's - finally not having symptoms but as they say "they're will always be bacteria lurking". He leaks only when he transfers or shifts his weight. We figured out it's the pressure applied to the area between the rectum and scrotum (he asked me to place the topic on this website, I keep encouraging him to establish here too. I have found it so helpful and I know he would too. He has visited the site but I think people would respond better to him personally than to me, the mom!) But anyway, the doctors put him on Oxybutynin ER but after taking it for a month it's done nothing. It's suppose to paralyze the bladder. I don't think that's the problem. Could it be the prostrate? They won't check it as they just say "Oh he's too young for those problems." Does anyone have any ideas as to why this is happening? He can retain urine all night. Just seems like there should be something they can do for it. One suggestion was to implant a device, the AMS 800, that controls the bladder sphincter over time. Anyone know much about that? He's keeping to the house and won't go out, although he loves people and it's so good for him to keep social. But he doesn't want to get dressed fully because of the problem and is resorting to staying in and not doing anything physical. He still has to master a lot of things. As a parent you get a little freaked out as we're always encouraging him to keep moving forward. Sometimes it's hard to know when to push and when to patiently wait for the next steps to happen. Thanks for any input. Sue (Mike's mom)

[Slowlegs]

Hi Sue (Mikes Mom).
I have the same issue. I can sleep all night but once I stand or sit up my bladder starts leaking. I think it may be because when sitting up, the urethra is toward the bottom end of the bladder whereas if lying down the urethra is at the top. Also, when sitting down, there is more pressure on the bladder. Infections won't help bladder control, perhaps he could do some searches on this site about the subject.

On the other issue however, we talk about pee and poo and pain and sex and everything on here. An account on here would enable him to talk to people who have quite possibly been through everything he has and found great solutions. I feel really bad for him not going out. Perhaps he is finding it hard accepting his new found disability but getting on here will help him prepare for the outside world which is a lot more accepting to the disabled than some newbies realise. I have discovered that a lot of ways I saw myself at first were based on the way I had seen disabled people before becoming injured. Once I became disabled I had to handle my issues within myself first before I could cope with the attitudes of others. Funnily enough, other people are way less judgmental in general than we can be on ourselves.

[edlee]

That is something the vast majority have to deal with. For me, condom catheters have been the answer. Finding the style and manufacturer that suits you can take a while.

Google condom caths and send for as many different sample packs as you can,,, all the makers and most of the distributers are happy to oblige.

Coloplast is the maker I use. Sometimes in addition to the adhesive already on the cath, it may be necessary to wrap a bit of tape around the shaft to "up" the confidence level.

Trust me when I tell you that knowing you aren't likely to p*** or s*** yourself adds greatly to your confidence in going anywhere.

There are lots of other choices involving drugs and/or surgery,, but this is the one that is working for me. One could easily try all the other alternative, while wearing the sheaths and leg bags as a safety device. Once the bag stays empty between intermittent caths (which are possible while wearing this device) you are home free,,, and dry.

Good luck,
ed

[irish]

edlee, on Jun 16 2009, 05:58 PM, said:

That is something the vast majority have to deal with. For me, condom catheters have been the answer. Finding the style and manufacturer that suits you can take a while.

Google condom caths and send for as many different sample packs as you can,,, all the makers and most of the distributers are happy to oblige.

Coloplast is the maker I use. Sometimes in addition to the adhesive already on the cath, it may be necessary to wrap a bit of tape around the shaft to "up" the confidence level.

Trust me when I tell you that knowing you aren't likely to p*** or s*** yourself adds greatly to your confidence in going anywhere.

There are lots of other choices involving drugs and/or surgery,, but this is the one that is working for me. One could easily try all the other alternative, while wearing the sheaths and leg bags as a safety device. Once the bag stays empty between intermittent caths (which are possible while wearing this device) you are home free,,, and dry.

Good luck,
ed

Slowlegs, on Jun 16 2009, 05:12 PM, said:

Hi Sue (Mikes Mom).
I have the same issue. I can sleep all night but once I stand or sit up my bladder starts leaking. I think it may be because when sitting up, the urethra is toward the bottom end of the bladder whereas if lying down the urethra is at the top. Also, when sitting down, there is more pressure on the bladder. Infections won't help bladder control, perhaps he could do some searches on this site about the subject.

On the other issue however, we talk about pee and poo and pain and sex and everything on here. An account on here would enable him to talk to people who have quite possibly been through everything he has and found great solutions. I feel really bad for him not going out. Perhaps he is finding it hard accepting his new found disability but getting on here will help him prepare for the outside world which is a lot more accepting to the disabled than some newbies realise. I have discovered that a lot of ways I saw myself at first were based on the way I had seen disabled people before becoming injured. Once I became disabled I had to handle my issues within myself first before I could cope with the attitudes of others. Funnily enough, other people are way less judgmental in general than we can be on ourselves.

Hi Sue,

Give him some time, this crap takes a while to get used to. As to the bladder deal, I have spent the last six months of so in a what they call the Dignity Study, sponsored by Allergan. Basically they inject your bladder with botox about 30 times, which keeps it from spasming. The treatment should last 6-9 months and the trial seems to be going quite well. Now, when I get the urge to pee, which is either chills on my back or light sweating around my injury site (t4) I have 15-30 minutes to find a place to cath. So far, So good, ask your urologist.

good luck, it'll get better

irish

[CareMomOH]

Thank you all for your input. Unfortunately I was worried that it might not be so easily remedied, but I like the suggestions, concerns and encouragement. The botox thing is pretty interesting, we'll ask about it the next time we see the urologist. I hope it works for you. Also the condom cath sounds like the thing to look into right now. He needs the confidence to get out again. I will get those samples as a start. Thanks again! I'll let you know how things go - nor not go - ha ha! Sue (Mike's Mom)

[araitn]

Hello Sue.

I have the same problem as your son. My urologists calls it "stress incontinence". Any time I strain my ab muscles, in any way, I will have leakage. I'm an active person, so I have leakage throughout the day.

My doctor said that I have a relaxed urinary sphincter due to nerve damage. She told me there is a surgery to insert an artificial sphincter but, she didn't recommend it for me because I am able to voluntary empty my bladder, without cathing. She didn't want to cause any problems with being able to empty my bladder.

The solution that works for me....... diapers. I wear them (Depends brand) 24/7. They are not noticeable under my shorts or pants and do an excellent job at soaking up any leaks while keeping my skin dry. They're also not uncomfortable to me because I don't have any sensation in the groin and butt area. Since I also have a flacid bowel, the diapers are extra protection for that area also. Recently, I've been having some better luck with my bowel routine, but that's a different topic.

I may be wrong, it happens quite often, but, I don't think the botox will help your son at his injury level. I believe that the botox treatment is more for a spastic bladder or urge incontinence.

A condom cath would definintely be worth a try. My doctor gave me a sample pack of condom caths but, I've yet to give them a try. Let's just say that I'm not the most blessed person and I would worry about the condom cath slipping off. Plus, I'm comfortable with my current solution.

[CareMomOH]

Thanks Aartin - it does sound like what Mike has and they have mentioned stress incontinence before. He was hoping it was something they could fix . . . . It's good you can voluntarily empty your bladder. Mike would like that. The leaking really drives him crazy as he does want to be active. He's tried to wear a guard and such but finds it very difficult to cath with the extra padding - it's too bulky to rest the urinal on and too hard to pull everything down. So I have ordered samples of the condom caths and hope they arrive soon. Thanks again for all the help and I hope someday they can do something for your pain! Sue