I just wanted to get some opinions out there to see what other people think. My boyfriend's a L1/L2 incomplete para (post-injury 5 years) and has terrible urinary leakage and infection problems. He uses an indwelling catheter and legbag because of difficulties cathing and, since his accident, has had a *constant* UTI. The worst part about the infection is that his pee smells indescribably bad; so bad that if you walk into the bathroom after he's emptied his legbag, flushed, and left the room, you can still smell it. What's even more awful is that he's got terrible problems with leaking. His pants are constantly stinking of urine (the smell is so bad that sometimes you have to wash them twice just to get the smell out), and sometimes I feel uncomfortable getting into bed at night because the sheets and blankets smell of it, too. I especially hate it when even my own clothes begin to stink of it...

When he takes antibiotics, the smell disappears COMPLETELY, and it's like a wonderful, odor-free holiday. However, he's absolutely terrified of antibiotics, to the point that he's only taken them maybe three times for about a week in the past three years that we've been together. He says that he doesn't want his body to build up an immunity to the antibiotics because he's afraid that he'll die of something as simple as a UTI when he's older since the antibiotics wont have any effect. So he refuses to take them. My question is, though, is it more damaging to his health to have a constant urinary infection like that or to take the antibiotics and risk them not working in the future?

I also wanted to know how often he should be changing his catheter. That's another thing that really scares him and he'll put off doing as long as he can. Sometimes I think that the leaking is so bad because he leaves it in there too long and there's build-up/encrustation inside. He's finally due to get examined for some Botox injections at the end of November, so hopefully that will enable him to start cathing normally and use intermittent ones so we don't have to worry about constant infections, offensively smelly pee, and chronic leaking (seriously, copious amounts of urine come out of him on a daily basis every time he transfers or moves and especially when he has the catheter blocked off).

I also wanted to know if there's any one type of legbag that is known for staying shut tight a.k.a not coming "un-valved" all the freaking time. I seriously cannot count how many times the valve has come undone and an entire bag of reeking urine has spilled out over the bed or his clothes, and he's flown into a raging fit where things get thrown and broken, he's screaming, and I'm left there waiting for him to calm down so we can just get things cleaned up and move on.

Blah, I know I'm rambling now. It's just that as hard as these bladder issues are on him and his self-esteem, they affect me, too. And worst of all, the intimacy between us has dwindled down to almost nothing because the smell of his urine is ever-present, and I hate getting it on me and smelling of it myself

It's an awful situation (for both of us), but I can't talk to him about any of this because he's extremely sensitive about bladder issues, and never, ever wants to talk about it or just gets angry because he thinks I'm accusing him of not taking care of himself or not doing whatever he can to take care of the situation. I guess I just needed to vent a little...

I can't answer all of your questions, but I can try on a few.

I've heard of people being on long term antibiotics. They switch up the type to avoid any amunities to it, and the do it often.

Caths should be changed once a month. Six weeks at the most. Perhaps the lack of changing is part of the issue?

I'd reccomend leg bags with flip valves.
http://www.greatmedicalsupplies.com/supply...alve-452919.htm

Clamps
http://www.greatmedicalsupplies.com/supply...each-150107.htm

or pop off lids. Personal experience makes me avoid the twist valve opening ones. I also suggest an anti-reflux valve, so once the pee is in the bag it can't backtrack, possibly causing infection.

Also, is the bag being cleaned regularly? How is his fluid intake? These are both things that can = smelly pee.

The smell is so bad that he's literally changing the bag every single day. He's British and gets all his supplies for free, so it's not a problem to go through them like that. As for fluid intake, he's very good about it and always has a water bottle full of vitamin C with him.

You mention difficulties cathing. What are they?

Pwuff

Do you have accsess to an Urologist?

Yes, he does. He's finally going to see her in order to look into getting Botox injections, hoping to make cathing easier.



For some reason he just can't seem to get the catheter inserted easily. Changing the catheter ends up being a multi-hour extreme stress-out for him, so just quickly, intermittently cathing isn't really an option. A couple years ago he went and had a small video camera inserted in his urethra to see if there were any obstructions preventing him from cathing, but they couldn't find any reason as to why he'd be having problems like this.

How often does he flush his catheter? I would expect at least once a day.

Also, indwelling catheters have a tendancy to cause or form bladder stones. He may need to go in for a test, just to make sure this isn't another issue to cause of his leaking.

I'm sorry but not taking antibiotics when he clearly needs them actually is 'not taking care of himself' and he needs to be told that. Not completing the whole of the prescribed course of antibiotics is a sure way of allowing your body to gain an immunity to antibiotics and also means that they don't work either so the only thing worse than not taking them when you really do need them (as he clearly does) is to only take a part of the prescribed course rather than completing it. A long established UTI won't go away by itself but it's usually a fairly easy thing to treat and can be addressed by a decent GP. He does however need the urologist to address the leaking which IMHO is likely to be a separate issue.

He really does need to be told that he really needs to bite the bullet and take the course and sort out his problems. Many many of us use antibiotics once or twice a year with no long term ill effects. As for the indwelling cath and difficulties changing it it may well be worth considering a supra pubic.

I honestly have kinda the same problem a couple of years ago. I constantly had UTI and I was getting so fed up with dealing with them and all the antibodices. My doctor recommended this surgery to me where they take your appendix and create a tube leading from your bladder into your belly button. I know it sounds super crazy, but actually it is so much easier to caft and such. I do leak still sometimes, but not as often and I still wear like a diaper just incase. My boyfriend actually says its the coolest/weirdest thing lol but you should ask your boyfriend's doctor about different options maybe dealing with this seen it is that bad.

Hi sorry i still don't quite understand in your third paragraph you say you want him to start using intermittent catheters and in subsequent posts you say 'there is no way he can use these'??so how can the two things be correct?
sorry to ask maybe i have misundrstood,i am L1 and use intermittents which i would imagine cause less chance of infection,is it a problem with dexterity?
maybe supra is the way to go,having infections all the time is unhealthy in the extreme
best of luck

Hi Lula, I don't know what country you are in, so it may be a bit difficult to suggest some options.
Do you have access to a Continence service/ Community health centre, Do a web search for local resources.
In the meanwhile the questions I would ask if I came to see your boyfriend would be along these lines:
1. whats his hygiene, is he self caring or relying on others.
2.How often is the leg bag changed? (You should use a sterile leg bag which stays attached to the catheter for I week, then changed. At night attach a larger 2 litre bag to the leg bag) I suggest a Conveen 5163 Sterile leg bag.
3. I advise my clients with permanent caths to use a Bardex IC silver coated catheter.
4. I also suggest Cranberry capsules daily/and Vit C ( Bacteria in the urine doesn't like acid)
5. Whats happening in the bowel dept?

Be aware that untreated UTIs can lead to Kidney problems down the line.


Feel free to email me as I am happy to send info

Regards your friendly Continence Nurse

mdodd@rdns.com.au

Well, the same thing that always happens when I bring up cathing issues happened again tonight. I asked him if he ever flushed his catheter (no, he doesn't) and that made him suspicious that I'd been researching things online, which just made him furious. He accused me of thinking that he's incapable of taking care of himself and that he's not doing everything within his power to make the problems better. This is something I just seriously can't talk to him about, no matter how I approach him, even though I think that's unfair because it's something that affects me, too.

Faribeauty, he's actually looked into the belly button surgery before but hasn't mentioned it much in the past year because I think he's hoping the Botox will work.

Dom, he'll hopefully be able to use intermittent catheters with the help of Botox.

Jasperb, he's an independent para with perfect dexterity, and his legbag is changed every day. As far as the bowels go, a lot of the time it's this cycle of him being blocked up for a while and then having "ass-plosions" then going back to being blocked up.

I ving a huge amount of issues till I started taking ditropan to reduce bladder spasm, it made it all much easier. It might be something that he might have to inquire about. There are also a lot of chemical sprays that you can buy that eliminate the urine smell, I also use a bed pad and I sleep with a pad in my jocks, so that if there is leakage then it is contained and easily cleaned up, a strong odour is a sure sign of a uti. Hope all goes well.

Hi Lula,

As regards the leg bag changing, standard practise is to change it once a week, the reasons are:

1. Each time you break the seal between catheter and leg bag tube, you are at risk of infection (As that is a direct entry into your body)
2. Cost ? who is paying for the leg bags, are you disposing of them every day, if you are reusing them that could be the source of the infection, ? are they sterile or non sterile bags when you get them.
3 As regards the bowels he needs to avoid being constipated,as this will aggrevate the bladder problems, he needs daily aperients or a better bowel management plan.

I feel that you both need to talk to somebody, not just about continence issues, life doesn't sound to good at the moment

Cheers

Aw I'm so sorry that he thinks that way! It's not that he's not taking care of himself its that he's just settling because I guess from my point of view the more stuff you have to do the more dependent you are on those things. It really does suck, and I know its hard talking to him about it. I still get embarrassed if some one asks me about my stuff lol But I think maybe if you just don't back down from you're opinion present it in a calm manner and even if he yells, screams throws things just tell him things need to be done to make his life easier so he won't be so frustrated all the time. I know it seems challenging I can remember times when I would do those exact same things cause I'd be so angry with myself for letting stuff like that happen. I hope everything works out I know how hard it is and I know you have a big heart and love him very much and only want him to be happy
Best Wishes!

There are medications that are antibacterials but not antibiotics. I have taken Trimithroprim for years after a long lasting UTI and I havent had a bad one since. It isnt just the inconvenience, this chronic infection is putting his kidneys at real risk. He shouldnt be having spasms at his level and I wonder how much help he had in the past when learning to ISC? I know some guys have a kind of psychological block to self cathing and also he may think with a foley and legbag he is at less risk of big accidents but this is disabling him more than his injury, I imagine it stops him doing all sorts of things and must be embarrassing.

He needs to impress on the professionals just how bad this is. If it were me I would be asking for a referral to urology back at my spinal unit.

Tin