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Thread: Overactive Bladder/Retention Laying Down/Trouble Cathing - Supra Pubic?

  1. #1

    Overactive Bladder/Retention Laying Down/Trouble Cathing - Supra Pubic?

    Hey guys. I've mostly avoided posting since I'm born with CP and you guys get a little ticked off about non-SCI stuff (unfortunately I don't know where else to ask). Anyway I was running and walking and about 4 years ago, stuff started going downhill, throw in a couple injuries that weren't severe enough to explain it - now using a wheelchair 90% of the time and I'm just a case of no one knows exactly what to do with me - I'm getting the run around from doctors (one thinks it's just CP and age, another disagrees that it's too severe, another has no clue, you get the point). But hey I'll give this a try.

    I've had an overactive bladder for the past few years, throw in a few times a day I either have to strain real hard to pee on my own or I cath. If I drink water normally, I have to pee every 30-45 mins, urgency too. Considering I commute by public transit to work 1.5 hr each way (with no bathrooms half of the way), I've managed to function by...just not drinking water. I try to catch up by drinking more water at home, as much as I can, but I've been feeling like crap for the better part of the last year. I tried a bunch of anti-cholinergics including vesicare, and the newer Toviaz and Mybetriq (as soon as they came out). I didn't notice much of a change and the side effects we're unbearable (including the dryness triggering my susceptibility to styes in my eyelids, I spent 3 months going about looking like I got punched in the face and I finally paid out of pocket to get the pus drained and cut out :s - it was considered cosmetic and not covered ugh)

    The kicker? I wake up almost every morning in full blown retention, every time I lay down, especially at night, I don't feel anything (or any urgency to go) until it feels back up to my kidneys and it hurts to breathe (and I'm on no medication at the moment, it's not like I'm knocked out). This happens mostly in the mornings but I also get a week or two a year when it happens all day and not just mornings where I'm on the floor for an hour in pain from spasms, I can't pee and I can't get a cath in either, everything just hurts no matter what I do. I've been to the ER, they stuck me with a foley and sent me to see my urologist two weeks later. That last time, they screwed up the ballon and I had chunks of tissues coming through and spasms, went back to the ER, told me it couldn't be that bad and didn't do much - out of 4 visits in one week to the ER, once they gave me painkillers after they figured out the balloon was lodged funny and underinflated and didn't send me home with nothing). So since I gave up on ER and I've just handled it on my own. I still don't understand how I can have to pee all day but when I lay down, I feel nothing :s

    And now add to that that I have HUGE troubles cathing these days, I use 10Fr and sometimes I can't even get it in, the sphincter feels clamped down. Sometimes I manage to get the cath in, but it ain't coming out, it's clamped down with spasms. I tried everything, diff caths including coude, small, bigger, PVC, silicone etc, extra lube, positions, (uninflated) foleys seem to be more flexible and better and xylocaine seems to help a bit etc and I just end up having to pull it out slowly. I can feel the cath ''ripping out'' on the way out, sometimes with blood, sometimes not. So now I try and avoid and just strain like crazy...sometimes it works, sometimes not. I now have a small prolapse from straining so much.

    For the past few months, this constantly being dehydrated is getting to me. I can't tolerate foleys at all, IC I try to avoid at all costs. I feel like crap constantly. I try to drink as much water as I can at home but I just can't keep up. So I saw my urologist a couple months ago for the first time in over a year, I was fed up. My last (first) urodynamics 2 years ago didn't turn up much but a small bladder capacity so he sent me for videourodynamics (today) - which turned up apparently normal after 400 mL in and stopped. I wanted to cry...they asked me if I'd been scoped too (since cathing is such an issue), nope not yet. I'm at a loss. Should I videotape my every morning routine to prove the point?

    I'm almost willing to ask for a Supra-pubic, I can't function drinking water like normal people (= peeing every 30-45 mins - nevermind finding a bathroom!) but I also can't tolerate caths of any sort lately. This is no quality of life, I'm dehydrated and feel like crap all the time, and my life revolves around bathrooms/can't go there since there's no bathrooms/am I gonna make it/pee myself/be able to cath (depending on the issue...). Is it reasonable to ask for that? A feasible option? Part of the urodynamics to see if I was a candidate for bladder botox (apparently just approved here - of course it turned up normal so no go). I don't know what else to do...

    Sorry for the rant and thanks guys!

  2. #2
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    I am considering how your problems relate to my experiences. There are some similarities. But for now, I want to address your "I'm born with CP and you guys get a little ticked off about non-SCI stuff" comment. We here at CareCure have many members who don't have spinal cord injuries. Let me speak for those of us who care and understand your situation--and there are plenty. You and your problems, cares, concerns, and comments are welcome here. All in need are welcome here. Wise Young has stressed this many times, and he's The Man around here. CareCure is his baby. Anyone here who doesn't agree with that is just being an ass. Pay them no mind.

  3. #3
    It sounds like you have tried (an endured) it all. A supra pubic catheter may be a good option. Get your urologists opinion. One thing about the supra pubic catheter is that it is reversible if it doesn't work for you or you don't like it. Yes, the bladder may shrink with prolonged use, but you should know pretty quickly if the SP is for you.

    I've had an SP for 4+ years (I'm C6/7 complete spinal cord injury). My only complaint is that I didn't do it sooner.

    All the best,
    GJ

  4. #4
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    I had problems with catheters early after my injury. I tried different types and shapes until I found one that worked for me. I had problems with a stiff catheter causing a lot of trauma, bleeding, and burrowing into tissue causing a false path. That in turn caused scarring. The red rubber caths I switched to became difficult to insert, then once inserted were hard to remove. Sometimes I could pull the red rubber catheter until it stretched so far it changed color (pink). I realized I had a real problem when one got really stuck. I had to go to the ER, and my urologist had to anesthetize me and remove it himself. He gave me valium to relax me if it happened again (didn't use). I use 12fr silicone now. (10fr is abnormally small.)

    I learned a better way to cath from the SCI Nurse. Don't force the cath too much. The sphincter muscle fatigues fairly quickly. Applying pressure and waiting for the muscle to spasm or relax works for me, especially when I'm full. I see you've already tried different lubrication, catheters and shapes, so I don't know what to add. Foley caths cause more problems than their worth for me--infections, swelling, sensitivity.

    Drinking a lot causes frequent cathing for me too. Sometimes in as little as 20 minutes. I wake up every hour or so at night sometimes. I think my body just dumps all that excess fluid randomly. I never know when. It's not always after drinking a lot either. Your problem seems much more extreme. Not drinking? Dehydration? That's bad for your kidneys. Of course so is too much back pressure of urine into those kidneys. You must find a solution. If your urologist can't help, find another who can.

    I realize that CP is different. Most with SCI have stable physical conditions that can deteriorate slowly over time. I know CP can create large physical changes from day to day--good/bad, weak/stronger days. It's a lot to deal with, but don't be discouraged. Find something that works. And above all live and try and find what happiness you can. You deserve the same considerations as we with SCI do.

  5. #5
    Senior Member ~Lin's Avatar
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    I wouldnt generalize that strongly, while i too have run into individuals who while unfriendly or downright hostile due to me not having a sci, more have been welcoming and helpful and as time goes on i seem to find more similarities with many of my issues and sci, like neurogenic bladder, and have greatly helped my quality of life being here.

    My concern would be not tolerating the spc since you cant tolerate a foley, but at the same time you seem to have more urethral issues than bladder so you may not have problems with the spc. Definitely bring it up with your uro. Interestingly we are almost reversed in a way, i pee all night long but am fine during the day. However i dont seem to have and OAB issues, just the volume ones at night. It has been wonderful being able to use a bag at night and not get up, especially dealing with crede or caths in the middle of the night. And being able to flip a valve during the day and pee instead of struggle for ages with crede or caths! Im amazed at how quick a bathroom trip can be now
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  6. #6
    Have you had Urodynamics (UDS) with video? You need to get the complete picture of what your bladder is doing now. You can have frequent voiding with overactive bladder but also with a full bladder just leaking. Tamsulosin 0.4 mg daily may help with issues of emptying and putting catheter in but with UDS with voiding they would see if some type of obstruction-stricture? prostate? sphincter spasms? Try a coude' catheter.
    CWO

  7. #7
    Senior Member ~Lin's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Have you had Urodynamics (UDS) with video? ... Try a coude' catheter.
    CWO
    Just trying to help, but yes he has had video urodynamics and tried coude.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  8. #8
    Quote Originally Posted by SCI-Nurse View Post
    Have you had Urodynamics (UDS) with video? You need to get the complete picture of what your bladder is doing now. You can have frequent voiding with overactive bladder but also with a full bladder just leaking. Tamsulosin 0.4 mg daily may help with issues of emptying and putting catheter in but with UDS with voiding they would see if some type of obstruction-stricture? prostate? sphincter spasms? Try a coude' catheter.
    CWO
    The first time I had urodynamics 1.5-2? years ago, it was just the standard without video. I couldn't hold more than 350 mL then tried all the pills and went about my business best I could. This time it was videourodynamics they said. They basically filled my bladder with 400 mL of dye (I watched my bladder fill on the screen) and I didn't leak (well on the second try, first time catheter wasn't in right and I leaked everywhere - they had to start over) they just stopped and said it mostly turned out normal. I was told they were looking out for my bladder filling properly and nothing backing up. Though every morning by the time my sides hurt and I can't pee anything out, more than 400 mL comes out so I'm not sure what the point here was. I might just start documenting everything, I don't know it's frustrating.

    Tried the coude, unfortunately couldn't find any angle that made a difference. Something clamps down on the cath and won't let go no matter how much I wait to relax and always worse on the way out it's always at the same spot X inches in or out. My urethra just seems constantly irritated and angry, with foleys any slight tugging makes it worse and worse and I can't tolerate them at all anymore unless I lay in bed perfectly still. What I found sort of works on worse days for intermittent cathing is uninflated foleys that are more bendy (flexible) and lots of lube. Not perfect but gets me by. I don't know. Being allergic to latex, I'm not left with many options that aren't super stiff, so far the smaller the better (used to be a point I could get a 14 regular cath in - no way these days - who knows). I wish there was a non-latex equivalent to the flexible (well latex) caths but I haven't found it yet!

  9. #9
    Quote Originally Posted by ala View Post
    I am considering how your problems relate to my experiences. There are some similarities. But for now, I want to address your "I'm born with CP and you guys get a little ticked off about non-SCI stuff" comment. We here at CareCure have many members who don't have spinal cord injuries. Let me speak for those of us who care and understand your situation--and there are plenty. You and your problems, cares, concerns, and comments are welcome here. All in need are welcome here. Wise Young has stressed this many times, and he's The Man around here. CareCure is his baby. Anyone here who doesn't agree with that is just being an ass. Pay them no mind.
    Ah yes, sorry maybe I was quick to generalize, I was upset, the test was a disaster in so many ways, and this CP undiagnosed mystery is getting to me. I've gotten a few ER uros just tell me straight out they couldn't do tests then and there and do nothing more than a quick fix (a foley and send me to my uro a few weeks later) because they have no idea what they're doing, they've never seen a case like mine. Seems like they're trying to find a specific pattern and it's just not happening my bladder is so unpredictable and in the meantime I'm just left to try and deal with it on my own (in not so ideal ways). I feel like I'm constantly just getting pushed around to the next guy, the next place and not sure where to go *sigh* I'll get over it

  10. #10
    Quote Originally Posted by gjnl View Post
    It sounds like you have tried (an endured) it all. A supra pubic catheter may be a good option. Get your urologists opinion. One thing about the supra pubic catheter is that it is reversible if it doesn't work for you or you don't like it. Yes, the bladder may shrink with prolonged use, but you should know pretty quickly if the SP is for you.

    I've had an SP for 4+ years (I'm C6/7 complete spinal cord injury). My only complaint is that I didn't do it sooner.

    All the best,
    GJ
    Quote Originally Posted by ~Lin View Post
    My concern would be not tolerating the spc since you cant tolerate a foley, but at the same time you seem to have more urethral issues than bladder so you may not have problems with the spc. Definitely bring it up with your uro. Interestingly we are almost reversed in a way, i pee all night long but am fine during the day. However i dont seem to have and OAB issues, just the volume ones at night. It has been wonderful being able to use a bag at night and not get up, especially dealing with crede or caths in the middle of the night. And being able to flip a valve during the day and pee instead of struggle for ages with crede or caths! Im amazed at how quick a bathroom trip can be now
    True you guys. I will bring it up for sure. It's been in the back of my mind for a while but now more than ever, I'm not sure what other options I have. All I know if I need a BREAK big time and I'm willing to try whatever (not to downplay how serious it is but I'm at that point). Lin sure, I'm a little worried I wouldn't tolerate it but willing to give it a try, the urethra issues makes me think that if I can bypass that, who knows. Either way, at this point I'm fed up, I know all the accessible bathrooms in coffee shops, stores and their business hours in town, I've missed on trips, forget flying or going anywhere, I only go to the same places because I know I can get to the bathroom etc. I leave the house entirely way too early just to plan around finding a bathroom, you get the point. It's only going to get worse with winter coming :s And I'm seriously done with running to the ER at all hours because it's impossible to see your own uro with any less than 2 weeks notice (or visiting the ER 4 times in a week - though I learned how to deal with it on my own and my uro set me up now but still). I just don't know if they'll consider it, I've been asked by nurses if maybe someone could help me cath it wouldn't be so bad (done it, tried it nope), if I was sure it was retention every morning, or if maybe the pain or spasms weren't that bad (*sigh* cause I love waiting hours in the ER - when I say I was on the floor in pain for a couple hours, I ain't kidding, I've had lots of painful surgeries, I don't usually run to the doc for little things - in fact I love to avoid them). Ah well. Fingers crossed!

    Quote Originally Posted by ala View Post
    I learned a better way to cath from the SCI Nurse. Don't force the cath too much. The sphincter muscle fatigues fairly quickly. Applying pressure and waiting for the muscle to spasm or relax works for me, especially when I'm full. I see you've already tried different lubrication, catheters and shapes, so I don't know what to add. Foley caths cause more problems than their worth for me--infections, swelling, sensitivity.

    Drinking a lot causes frequent cathing for me too. Sometimes in as little as 20 minutes. I wake up every hour or so at night sometimes. I think my body just dumps all that excess fluid randomly. I never know when. It's not always after drinking a lot either. Your problem seems much more extreme. Not drinking? Dehydration? That's bad for your kidneys. Of course so is too much back pressure of urine into those kidneys. You must find a solution. If your urologist can't help, find another who can.
    Funny, I wonder sometimes, it's like stuff goes right through me, I know I have a fast metabolism but come on. How long should people wait for it to relax? I've waited half an hour...that works at home not really feasible in the real world and it's causing issues at work (that's if someone isn't taking the one stall - another reason I just drink even less). And my urologist is pretty good compared to the generic ER ones I've seen. He's kind of unsure what to do like all but willing to look for answers and solutions. We'll see what happens I guess, I'll definitely bring it all up

    Thanks all!

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