For reasons too tedious and depressing to go into, there is a slight chance I may need to wear a piss bag for a while, possibly forever. I have questions and my google-fu is so weak that I’ve not been able to find the answers anywhere. If anyone here does have any experience, either as a permanent catheter patient or as a medical professional who treats them, I would very much appreciate your input.
I basically just want to know three things:
1). If you have to wear a piss bag, what happens when you get an erection?
2). How do you masturbate?
3). What are you supposed to do if you want to have sex?
As I understand it, if you’ve got the bag, that means you would have to have a tube running down your urethra pretty much all the time. If that’s the case, then i would image the answers to my questions would be:
1). It hurts.
2). You don’t
3). You don’t
In which case I would probably refuse it, because life simply wouldn’t be worth living. I’m a young guy (28). I feel I’m owed a good 30- 40 years of sex and I fully intend to have all of it. Like I say, I may very well not need one, it’s just a possibility, but I need to know what to expect if the worst comes to the worst. I can’t imagine that full time cath patients have to agree to a lifetime of celibacy. There must be some way to balance a piss bag with a healthy sex life.
Why might you need a cath? Two possible alternatives are intermittent self-catheterization which involves inserting a catheter into the urethra 4-6 times a day and suprapubic catheterization which involved creating an artificial opening in the abdomen directly into the bladder. Once this opening is made a regular catheter is inserted and attached to the drainage bag. However, it’s hard to say if either one might be appropriate for your particular condition.
I might need a cath for urinary retention. Retention causes back pressure on the kidneys. This in turn causes hydronephrosis, leading to kidney atrophy. According to my Docs, I am particularly susceptible to retention because my waterworks were damaged by posterial urethral valves when I was a baby. Like I said, tedious and depressing.
I also am aware of intermittant self-catheterisation. If the above weren’t enough, I was also born with a peculiarly narrow bladder neck. Once, I had to have a test called a MAG3. It involves pushing a thin catheter into the bladder, filling it up with water, and then taking X-rays of the bladder while the water is then pumped back out using the catheter. The test is used to measure the internal pressure of the bladder. Anyway, because of my narrow bladder neck, the Doctor couldn’t get the catheter in there. It kept banging up against the bladder neck and causing jolts of searing pain through my groin. Eventually, after about fifteen minutes of this shit, he ran out of patience and forced it up there. It hurt so bad I screamed, threw up on a nurse, and then burst into tears. And I didn’t cry when I broke my leg. So intermittant self catheterisation is not an option.
A suprapubic cath is an option, but I’m really only interested in talking about the worst case scenario at the moment. If a piss bag is on the table, I want to know what to expect. Thanks.
Also, a suprapubic cath can damage the male urethra during sex, and causes painful erections. Not to mention the fact that most women would rather crawl through a bath of spiders than fuck a guy with ten feet of plastic hosing sticking out his gut. Hardly a palatable alternative.
I’m not sure what you mean by “a piss bag”. Do you mean a urostomy? Or are you talking about a semi-permanent Foley catheter? Or what?
If you have urostomy questions, I’d suggest checking out c3life. There’s also the United Ostomy Associations of America, through whom we found local ostomy support and informational groups.
My partner had a colostomy for 2 years and a loop ileostomy for 4 months (when the attempted colostomy reversal failed) and is now back to “normal”. So while I don’t have personal experience with “a piss bag”, I do know a thing or two about loving a man with a bag of excrement on his belly. It wasn’t fun, but it also wasn’t the end of the world. I’d rather deal with a bag of poo than a funeral plot.
By “piss bag”, I mean any device which transfers urine from the bladder, via a tube, into a bag attached to the stomach or hip. I was principally thinking of a foley catheter, but a urostomy fits the bill just as well, in so far as it’s repulsive, and highly off-putting to prospective partners.
Also, with respect, your experience with your husband isn’t very germane to my situation, although I sincerely thank you for taking the trouble to share. I’m in a very different situation. You were already in love. You’d swapped vows and gotten a mortgage before you had to deal with his catheter. I’m a single guy. I’d have to be very lucky indeed to meet a girl open minded enough to deal with bags and tubes within the first few weeks.
So yeah, going forward, let’s agree, for the sake of simplicity if nothing else, that the term “piss bag” refers exclusively to a Foley catheter, a semi-permanent cath which runs down the urethra. My questions again:
1). What happens when you get an erection?
2). How do you masturbate?
3). How do you have sex?
Many thanks in advance.
P.S. - Thank you WhyNot, for the links. I’ll make sure to look at them.
It sounds to me as though you should do well with intermittent self-catheterization. Can’t they dilate the bladder neck under anesthesia so that you can catheterize yourself? It sounds like they would have to dilate the neck to get a Foley in anyway (and a Foley would have to be thicker).
Actually, no I wasn’t in love/mortgage/etc. We’d “hooked up” three weeks before his surgery, which was unexpected and emergency in nature. We were lovers, but we were not at all settled, and it could have gone either way. We’re not unique. People with ostomies do date, and get married and get mortgages, all with bags of piss and shit hanging off them. That book has a whole lot of stories - some good, some bad - about people with all types of ostomies finding lovers.
Masturbation isn’t really an option with a Foley catheter in place. I’ve never known a patient to get an erection with a Foley, but I’m not always watching. Since they have to be changed periodically, people will sometimes remove them for intimate moments (alone or with a partner) and insert a new one when done.
It’s not very common (although it’s not unheard of ) for a Foley catheter to be used for very long term use, mostly because it does so directly interfere with sexual activity. Also because it tends to create a lot of UTIs and skin breakdown around the urethra (but suprapubic caths also have infection problems.)
I have no idea why a suprapubic cath would cause damage to the part of the urethra in the penis, because it doesn’t involve that part of the urethra. The surgery to make the hole can, however, cause nerve damage which can interfere with erection (as can urostomy surgeries.) It doesn’t always, or even mostly, but it’s not super rare, either.
Has your doctor discussed continent stomas with you? These are stomas which do not need a tube draining the urine from them all the time, but form a reservoir inside your body which you drain periodically. They don’t prevent you from masturbating, and present fewer challenges to body image and finding a sexual partner. Continent stomas include the Kock’s reservoir, Indiana pouch and Mitrofanoff reservoir.
I’m on my iPhone so apologies for spelling mistakes and the lack of proper quotations.
Yeah: I would be very happy if I got away with just being able to self-catheterise. Given my previous experience, however, I’m rather dubious about whether this will be achievable for me. If there is a procedure by which they could widen my bladder neck, I’ll certainly take advantage of it.
Cub Mistress:. I was going off this paper. It’s a catheter care guide for nurses. The relevant info is on page 16. However, I think I might have misread it. On second glance, it looks like that section may be referring to foley caths.
WhyNot:. Thank you very much for the information, and I apologise for the assumptions I made in my previous post. You must be a very understanding lady. Mr. WhyNot is a lucky guy
I’ve not heard of continent stomas but based on what you’ve said they sound better than a Foley or an SPC.
Quick question. I was under the impression that Foley caths had to be inserted at hospitals under medical supervision. Is that the case? I find it hard to believe that doctors would be very understanding about constantly replacing Foley caths for guys who pulled them out every time they wanted to have sex.
Foley caths can be inserted in the home. Usually it is done once a month by home health nurses. My patients with Foleys are usually elderly, but I would think some patients could be taught to do it for themselves, family members could also be taught.
Since placing a Foley really only has two more steps than inserting a cath (inflate balloon, check integrity), many patients can learn to do it themselves. Home health would (should) try to teach the patient. If they can’t manage it, try to teach a caregiver. If that doesn’t work, then the nurse would do it. But we want to encourage independence - if you *can *do it, you should do it. We’ll show you, teach you, observe you and make sure you’ve got it down, but the nursing goal would be for you to do it yourself eventually.
I’ve had both a Foley cath and a suprapubic cath, and I’ve had to do intermittent self-catheterization and urethral dilation. None of it is fun, exactly, but they all become “normal” surprisingly quickly.
Stelios, you mentioned that you were catheterized before and it was extremely painful due to the small bladder neck. It’s likely that the doctor was simply trying to use a catheter that was too big. Catheters come in a full range of sizes, from pediatric to don’t-come-near-me-with-that-thing. If your doctor wants you to try self-catheterization, ask about using a small catheter. It will take you longer to empty your bladder due to the smaller diameter, but you’ll be able to get comfortable with it.
If you need to use a Foley, you can definitely learn to remove and place it. WRT to sexual activity, unless your sessions last extraordinarily long, you should have no trouble placing a new Foley after the fun is over (i.e., your urethra was dilated by the Foley, and it won’t contract that quickly).
I hope that’s the case. The catheter seemed very thin, but I could easily be misremembering. If I ask for a pediatric cath, I might be able to manage it, and that would be such a colossal weight off my mind that I can’t even begin putting it into words!
Please tell me you never went near that so-called doctor again. And please tell me you reported him to someone.
While I’m not a medical person, common sense would suggest that this approach is a) brutal, and b) likely to cause damage.
I wonder if there isn’t some kind of procedure where - with APPROPRIATE PAIN CONTROL - they can use some kind of inflatable thingy to gently stretch the bladder neck.
Beyond that, I don’t have any good relevant advice, beyond saying that I hope you do NOT have to go the “pee bag” route.
And if it’s at all amusing: when Dweezil was not-quite-3 - a mildly autistic, non-potty-trained 3 - he had to have some tests that involved collecting urine samples. He was of course clueless about peeing into a cup, so we had to use a urine collection bag that basically used self-adhesive tape to glue the bag over the penis.
We got the thing on him, rediapered him, and he got up and started walking around - then stood stock-still and announced in outrage “My PEE-NEE STUCK!!!”. The epression on his face was really pretty funny.