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Thread: suprapubic negatives?

  1. #1
    Senior Member ~Lin's Avatar
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    suprapubic negatives?

    What are the negatives of having a SP done? I saw my new urologist today and he recommended it. He isn't pressuring me or anything, told me to think it over and let him know. Said that it could be set up to be done rather quickly, that it just requires sedation/local anesthetic, is quick to do, and that if I change my mind about having it at any time just remove the catheter and let it close up. So, it sounds great. I know a little bit about it from reading here but never knew it was an option for me and my condition. The uro said a SP hooked up to a bag at night would be a better option than using a urethral indwelling catheter at night, plus it would also solve my issues with IC where I have difficulty holding the catheter and getting it in without touching things with it first, and I also still find cathing quite unpleasant with a burning sensation that hasn't improved as much over time as I was led to believe when cathing was first prescribed. The uro said during the day I'd use a cap and just empty my bladder when needed. I have no sensation issues with knowing when I need to pee.

    Does anyone regret having a SP done? Or is it truly as simple and positive only as it sounds?

    I have a genetic connective tissue disorder (Ehlers Danlos), a movement disorder (Primary Myoclonus), and dysfunction of the autonomic nervous system (Dysautonomia). I have to use abdominal muscles to empty my bladder without a catheter, and have for as long as I can remember but have had more difficulty and complications over time. The dysautonomia adds to the difficulty because I frequently end up very dizzy while trying to force the urine out. I was prescribed IC about a year and a half ago, but was told to still try to pee on my own when I can (which means using abdominal muscles) so I wouldn't lose the ability to go on my own completely (her words) by the urology PA who handled my case after only 1 visit with the actual urologist. My new urologist was shocked at the lack of testing and appropriate care I'd been receiving. I was too, and I'd been waiting 4 months for this appointment. I'm getting a kidney and bladder ultrasound tomorrow, and already have more answers about the physiology of my problems and how they're caused by my disorders. They will be calling me to schedule the urodynamics, and my Uro said he can do it before or after the SP if I choose to get it, that there is no right or wrong order to do it and its up to me. I have extreme nocturia which is partially due to my CTD and dysautonomia as a result of the swelling and fluid retention which resolves once lying completely flat (and thats with me spending most of the day with my feet up already.) The hope is handling the nocturia with an indwelling will result in better sleep and less fatigue, I'm also seeing a sleep specialist soon. And the SP would bypass my pain issue with IC as well as hand shaking and coordination issues causing problems.

    So right now I'm leaning strongly towards getting it done, but before I decide for sure I want to make sure I'm not missing part of the picture.
    Last edited by ~Lin; 08-07-2014 at 11:51 PM. Reason: add urethral
    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.

  2. #2
    "...The uro said a SP hooked up to a bag at night would be a better option than using an indwelling catheter at night..."

    Sorry, but your uro should at least know that an SP is an indwelling catheter.

  3. #3
    Senior Member pfcs49's Avatar
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    Quote Originally Posted by Rustyjames View Post
    "...The uro said a SP hooked up to a bag at night would be a better option than using an indwelling catheter at night..."

    Sorry, but your uro should at least know that an SP is an indwelling catheter.
    I think he does and your objection is just semantics! I have a suprapubic catheter, not an indwelling catheter!

  4. #4
    There are two basic types of indwelling (staying in place) catheters: 1) urethral (through the urethra into the bladder) and 2) suprapubic (inserted through a surgical stoma into the bladder). pfcs49, if your suprapubic catheter stays in place all the time, and drains urine, it IS an indwelling catheter.

    Many people erroneously call only the urethral indwelling catheter a "Foley", which is actually a type of catheter that can be inserted as an indwelling catheter either though the urethra or a suprapubic stoma. The accurate descriptor for BOTH a urethral and a suprapubic catheter which stay in place all the time is INDWELLING.

    (KLD)

  5. #5
    Senior Member ~Lin's Avatar
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    sorry, I was typing really fast because as soon as I started I found out my roommate and I needed to leave asap for the movie we were going to, instead of 30 minutes later. So I rushed through everything so I could post it before leaving. I should have specified that my Urologist believes a SP catheter to a draining bag would be a better option than a URETHRAL indwelling catheter used at night.
    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
    Senior Member pfcs49's Avatar
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    Yes!! I understand it technically IS. My point is that this argument/discussion is about semantics. I find it incredible that a urologist wouldn't understand it as well. And, though not professionally trained, I'd expect that putting a Foley in nightly is higher risk than having a suprapubic in 24/7, and that is what the urologist was telling Lin.

    EDIT: posted before Lin's post showed, in response to SCI-Nurse

    P.S: IMO SP is a great improvement over other options!

  7. #7
    Senior Member ~Lin's Avatar
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    thanks pfcs. I'm really excited about all the problems this would solve and definitely make my life easier and things more enjoyable. But I didn't want to go and answer immediately since it IS a surgical procedure and its not anything I'd really looked into before, just something I recognized and knew the basics of what it was from reading people mentioning them here. I mistakenly thought having a SP would be more invasive than just using a urethral indwelling at night, but now I understand better. Especially after being told what a simple procedure it is and that its not permanent and can be reversed at any time by simply removing the catheter and letting the hole close up.

    I'm also working with voc rehab right now on returning to work and school, and hell being able to pee without transferring to the toilet could really help over a period of years with my joint damage ever increasing. When I first started cathing I thought maybe I could work it out to cath from the chair with extension tubing like I'd seen people discuss, but with the difficulty I have cathing (and being female) I pretty much have to push my pants all the way down to my ankles so I can spread my knees far enough apart to slightly decrease my hitting the catheter against my thigh and use a mirror to guide it. I have nerve damage in my arms (ulnar) which affects my coordination, plus poor proprioception due to my ehlers danlos, unsteady hands, and a tendency to drop or throw items that I now know is from my movement disorder. At this point I'm not sure which I'm more excited to get rid of, dealing with the nocturia or having to IC!

    One issue I'm concerned about is intimacy. I'm very shy about my body and don't feel very sexy anyway. Also embarrassed by the urinary issues and so have hid them for years. At home I've used a urinal at night to not have to get out of bed, its been many years and I've always hid it from roommates trying to take it to empty and clean when they aren't around or trying to "sneak" around to do it. And never could do it when staying overnight at my bfs place. But I did finally discuss things with him and asked him how he felt about if I had to use an indwelling at night and he assured me it wouldn't bother him, and even made some jokes about moving it for sexy times. So I guess it shouldn't matter that the tube will be coming out of my lower abdomen instead of urethra!
    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
    Super Moderator Sue Pendleton's Avatar
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    While the bladder and stoma may close right up if you decide a SP is not for you your bladder may shrink rather quickly and rule out CIC in the future. As far as plugging the SP and draining it may help maintain bladder capacity even if used only during the day but will your bladder like being plugged? I know since I went to indwelling urethral I can't plug it for very long at all without pain and bladder spasms hitting even taking 20 mg a day of Ditropan XL. This may be due to the two urinary sphincters fighting over being open due to the foley but urine building up in my bladder. This may not happen with a SP or would you leak from the urethra then or during UTIs? I would get the urodynamics done first. I would also ask for how long the procedure is viably reversible before the bladder shrinks to where CIC is no longer an option. And lastly, how many SPs has he placed and how many successful reversals out of those wanting one has he dealt with? Successful reversal being defined as returning to where you are now plus normal aging. Oh, and have you tried the nose spray that helps reduce nighttime creation of urine? I tried it way back when CIC was waking both me and my husband up. My problem with the hormone spray was the urine not produced at night came in rivers once I was up the next day and since I couldn't cath by myself, well, not a good solution.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #9
    Senior Member ~Lin's Avatar
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    I guess I'm under the impression my bladder wouldn't shrink since I wouldn't be using it open 24/7, I'd only be leaving it open at night and as far as treatment for quality and functionality of life goes its SP or urethral indwelling, no other option due to the causes of my nocturia. So I think as far as bladder shrinkage goes, there wouldn't be difference between SP with a bag at night vs urethral indwelling with a bag at night? Please someone correct me if I'm wrong, I've definitely made wrong assumptions before!

    I think I'm also better off than others when it comes to shrinkage since I don't have any sensation issues, so I can still try to hold it as long as possible during the day and not have to worry about damage. Leakage is a concern, I didn't think of that before. I'll definitely keep my eye out on that. UTI wise I'm not really super prone to them, as far as my urinary issues go I think I'm pretty low on UTIs. But then again I also have a tendency to have asymptomatic ones, and get them diagnosed as a result of nonstop vomiting rather than typical UTI symptoms... So UTIs are a concern, but I think with all the problems I have currently with cathing and keeping things clean and not touching the catheter to all sorts of things before my urethra, SP will decrease UTI risk. I hate having to throw out the cath so I've actually probably been having some risky behavior since I started with going ahead and using the cath when I should have tossed it and opened a clean one.

    I don't believe I get bladder spasms, so thats a plus. My previous uro did start me on a medication for bladder spasms at my very first appointment, I didn't believe I was experiencing bladder spasms and it definitely didn't help me at all, may have made things a little worse in fact. What I do have is spasms in all of the muscles down there, I'm also waiting to see a UroGyn right now actually referred by my Gyn because of it. The plan is to try botox on the muscle that wraps around the vagina, urethra, and rectum. But now you have me wondering if I might experience leakage if I get that done. But I have sexual dysfunction issues as a result of the spasms, and medicaid wouldn't cover much physical therapy so it hasn't helped at all. So maybe you're right that I should wait until getting more results back, like the urodynamics and see what happens with the UroGyn. Maybe the botox could help enough I don't need to cath! I'm so anxious for things to be better though that I'm also thinking well if its so easily reversible why not give it a shot and close it up in a couple months if it makes things worse instead of better.

    I haven't tried the nasal spray, no. I'd wondered about if it would help. A big part of my nocturia though is water retention as a result of my connective tissue disorder and my dysautonomia. My Urologist said they're a double whammy. That the connective tissue laxity and weakness is causing too much water to be retained in all of my tissues instead of being sent back to the heart and then kidneys. Then I'm also getting vascular dilation, and even more retained water with swelling of my extremities from the dysautonomia. And so once I lay down, all the extra water is finally able to move around and needs to be pumped out. I'd been given a short version of this explanation as a theory in the past, but he believes this is the biggest contributor and went into much more detail than the previous "well maybe you're getting better blood flow to your kidneys once you're laying flat" from other Drs. I would assume from it that the fluid needs to be gotten rid of, and so we can't treat the symptoms because it would make the underlying cause worse? Years ago disorders such as diabetes insipidus were considered, but at the time some other factors were going on that led to increased extremely dilute urine production during the day as well. Medication for it hadn't been brought up since.
    Last edited by ~Lin; 08-08-2014 at 01:52 AM.
    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.

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    Those were just the things I would ask about Lin. I doubt you'd have bladder shrinkage as long as the tube is plugged during the day. The nasal spray will work the first night fairly well so if you try it a 3 or 4 night trial would give you a good idea if you would benefit at night and if you can keep up with cathing the next morning. If not head directly to urodynamics and if you are a good candidate an SP catheter and more sleep.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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