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Thread: Considering bladder augmentation

  1. #1
    Senior Member McDuff's Avatar
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    Considering bladder augmentation

    I'm coming up on 16yrs post, and my bladder has been on a constant volume decline, seems like it loses a quarter every few years. I'm sure it's more linear, but I tend not to notice until the loss is big enough.

    I started out ~1200 right after the wreck, not sure if it was shock or not, because it lasted for awhile. Then it was like 800 all of a sudden, then 600, then 400. I was still doing ok "living" wise with that amount, and then Botox came about. Got me back to ~600 again for a few applications. Then it dropped again, and then again.

    Today, still getting Botox and being on an anti chlorogenic(I've tried them all), I am lucky if I get 225 before I get leakage. No Uti in a couple years, bladder gets scoped every time I get Botox, so nothing going on inside there. I've tried water only for weeks, tried diet changes, nothing seems to affect my volume level.

    Just mentioned it to my Urologist at last Botox, about ready to setup a sit-down with him, and have just started reading about it. Man, it's fairly big surgery, makes me queasy thinking about invading my body once again, already have a baclofen pump. I have slow bowels as it is too, hate to interrupt and have to heal them back up with a fairly long hospital stay to boot.

    I've read some past posts here, but was just wondering if anybody has any real world knowledge/thoughts to pass on. I would still plan on IC thru my penis just as I do now and the Doc said that was fine.
    "a T10, who'd Rather be ridin'; than rollin'"

  2. #2
    Quote Originally Posted by McDuff View Post
    I'm coming up on 16yrs post, and my bladder has been on a constant volume decline, seems like it loses a quarter every few years. I'm sure it's more linear, but I tend not to notice until the loss is big enough.

    I started out ~1200 right after the wreck, not sure if it was shock or not, because it lasted for awhile. Then it was like 800 all of a sudden, then 600, then 400. I was still doing ok "living" wise with that amount, and then Botox came about. Got me back to ~600 again for a few applications. Then it dropped again, and then again.



    Today, still getting Botox and being on an anti chlorogenic(I've tried them all), I am lucky if I get 225 before I get leakage. No Uti in a couple years, bladder gets scoped every time I get Botox, so nothing going on inside there. I've tried water only for weeks, tried diet changes, nothing seems to affect my volume level.

    Just mentioned it to my Urologist at last Botox, about ready to setup a sit-down with him, and have just started reading about it. Man, it's fairly big surgery, makes me queasy thinking about invading my body once again, already have a baclofen pump. I have slow bowels as it is too, hate to interrupt and have to heal them back up with a fairly long hospital stay to boot.

    I've read some past posts here, but was just wondering if anybody has any real world knowledge/thoughts to pass on. I would still plan on IC thru my penis just as I do now and the Doc said that was fine.
    I've been in the same position you are in now...trying to decide what to do, how to manage my bladder when my bladder capacity got so low that my life revolved around cathing. Botox no longer worked, dry mouth side effects from anticholinergic drugs, sleeping through a night...what was that?

    All of the bladder altering/management surgeries are not just "fairly big surgeries," but very big surgeries with a lot of recovery/down time. After weighing all of my alternatives, I decided I didn't want to go the big surgery route. These surgeries are always there, if in time I need them, but I decided to take baby steps to major surgery or at all. I decided to go with a supra pubic catheter, which if it didn't work out is reversible to the degree, that I would probably need bladder augmentation after long term on the supra pubic.

    This may not be an acceptable alternative to you because you have a much lower injury (T-10) than I have. My injury is at C6/7 complete. Cathing was a hassle for me, requiring assistance.

    Just one take on this big decision.
    Last edited by gjnl; 06-23-2019 at 06:18 PM.

  3. #3
    17 years post bladder augmentation. I'm C6/C7 complete and it has been no picnic managing my bladder. I don't know what level you are but you need to make very sure, if you are a quadriplegic, that you can develop the technique to handle a catheter. Do you work? This would be a factor for me. Will you be getting the stoma? To me, if you can get augmentation, get the stoma so you can through the umbilicus. I pretty damn sure that I have developed what is currently an extremely painful thumb basal joint disorder because of the technique I use to cath. You will still get infections. I still have to do Botox every fall. I will not do it anymore frequently. My kidneys have been good. My mucus production is quite bad, meaning I produce a lot of it. Getting hospitalized you will need a Foley every time and for me this is one damn nightmare as the Foley clogs up at least daily, if not twice or even more from the mucus. When I am hospitalized I biggest nightmare is usually not what I am hospitalized for, but the urological management.

    I can always hold 400 quietly, sometimes I spasm at less, I routinely hold 500 to 600. I instill 5 mg crushed oxybutynin and 30 mL saline before I go to bed to help keep things quiet. I do cath once during the night. Do you live alone? You will need to be able to figure out a routine with all of your bedside supplies and turning, sitting up and getting yourself into the proper position. It is a major commitment in lifestyle., Condom, Foley, suprapubic, urostomy, they all suck.

    We may not die initially from urological complications as we used to, but they still take their toll in the long-term.

  4. #4
    Take part of the intestine, and sew it on to the top of the bladder and make a stoma- tube out to abdomen to put cath in so you are recuperating from intestinal surgery ( NG tube, ileus), and bladder surgery. Have to keep tubes in an drain bladder then slowly remove so stitches won't bust. Start cathing about every hour for one week at week 4-6. then slowly build it up. It is a major surgery. You have to irrigate the bladder because of mucus from the intestine. It usually gets less over years but it can clog the stoma.. won't drain out.
    You just have some one help you cath/empty etc.. for first 3 months or so.
    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    Senior Member McDuff's Avatar
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    gjnl - yeah your mindset is spot on of where my head has been at for a few years now, that I am *always* having a running clock in my head of "when do I need to cath?" Since urine output is not linear, at least for me, a lot of times I cath and didn't need to yet after all, but when I'm working with such a small volume max, it only takes one mis-step and I've pee'd on myself. It's a mental brain drain.

    Botox is marginally still working for me, so I keep getting it, any little help is better than none at this volume. Same with anticlorogenics, so I suffer the dry mouth to give me an extra minute or two to get to a bathroom.

    The surgery is a scary thought, hence why I've procrastinated so long, and may some more, don't know. I am a low para and can cath fairly easy, so yeah don't think going for a supra would be much of a benefit for me.

    Thanks for your input.

    crags - Truth be told, the mucus output is one of my biggest worries. I currently don't need to do any bladder interventions, no instilling anything, flushing, etc, and having to add something more to my already life of processes, is not a good thought. Having to deal with clogged caths sounds like a nightmare. Do you ever have to double-cath when at home? ie; does a normal cath ever clog on you and you have to remove and insert another one to continue peeing? I just use a 14F intermittent cath, I would think that the foleys usually being a larger french wouldn't clog as easily, but I have had to have them changed during hospital stays before, so I guess they are more susceptible.

    I am a low(T10) para, so my cathing is pretty easy, so doubt I would go for the stoma. But who knows. Is the conduit bigger than a urethra, thus being less likely to get clogged up?

    I am retired from working now. Went back to work for a few years after injury, but in the long run, my body could not hold up to a full workday anymore. I spend a good amount of time in bed, resting, giving my skin a break(multiple flaps), etc, so I have a bedside routine for cathing. I use my wheelchair as another table, a little basket with lube, gloves, and other sundries, a urinal, sit on my cushion, a box of caths stand up on my footrest, and a small wastebasket next to it. If I had to, I could knock it all off in an emergency. I am also lucky to have an understanding wife who helps out when needed.

    400-600 sounds like a long lost dream volume to me. Do you remember how low your volume was before you had surgery? Just wondering how much of a "payoff" you got for going thru all this.

    Thanks for your info.

    CWO - ugh, that all just sounds nasty. I'm going to reread your paragraph every time I think I am getting close to wanting surgery. Seems like they could stitch a balloon onto my bladder and get the same results and no mucus issues. We need better alternatives.

    Thank you for the details.
    "a T10, who'd Rather be ridin'; than rollin'"

  6. #6
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    McDuff,
    Do you supplement with pads or a diaper in order to avoid the worst- which is having to change cloths and cushion?

  7. #7
    The procedure described above by CWO is of a combination bladder (clamshell) augmentation and a Mitrofanoff. While often done together, especially for women, it is not necessarily required that you have a Mitrofanoff along with an augmentation. Large intestine (de-tubularized) is usually used for the "patch", although stomach has also been used (but is a bigger surgery). Small intestine is not used in an augmentation, but may be used in a Mitrofanoff.

    In an augmentation without Mitrofanoff, you will have an indwelling catheter placed after the surgery through your urethra. This will be left in place while the stitches heal...usually 3-6 weeks depending on the surgeon. Yes, mucous can be a problem, and so irrigation of the catheter may be needed while in place, and irrigation/flushing of the bladder 1-2X daily may be needed after straight caths for sometime...sometimes forever, although many find that the need for this goes down significantly after the first year or so. You may also need to take medications to control metabolic acidosis that can result from large bowel absorbing acids from the urine in the augmented bladder. This also may only be needed temporarily.

    It is a big surgery, but if you want to avoid having to use an indwelling catheter, and the surgeon is skilled and experienced in this procedure, generally a hospitalization of 5-7 days is required.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  8. #8
    Senior Member McDuff's Avatar
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    Tetracyclone - yes I do. I wear the thin pullup Depends(Costco monster box), no way I can feel safe enough to go out and about w/o a safety net. I'm experimenting with these new little "Mens pads" too, they are kind of like a sanitary pad shaped to fit in front, but my "leakage" tends to be more than they catch so far. I have always, since sci, slept on a chuck as a matter of course just because...

    KLD - thank you for that differentiation. That does make it more palatable and easier to wrap my head around. I'm having a hard time understanding the irrigation part using IC caths; if the mucus will plug up a cath, how do you ever get it out? Do you just overfill the bladder and try to let it blow out thru the urethra?

    Does the med for the metabolic acidosis affect the rest of the normal bowel in any way that harms or inhibits stool movement?

    Is there an average size they go for in improving the bladder? I would like to know how big a benefit I would get for all the rigamarole. After 16yrs of IC and a few months of needed foley use for various reasons, I tend to lean towards staying with IC. But, the outcome would need to be worth it.

    Thanks for the help.
    "a T10, who'd Rather be ridin'; than rollin'"

  9. #9
    Quote Originally Posted by McDuff View Post
    Tetracyclone - yes I do. I wear the thin pullup Depends(Costco monster box), no way I can feel safe enough to go out and about w/o a safety net. I'm experimenting with these new little "Mens pads" too, they are kind of like a sanitary pad shaped to fit in front, but my "leakage" tends to be more than they catch so far. I have always, since sci, slept on a chuck as a matter of course just because...
    Have you tried the men's pouches?
    https://www.adultdiapersandchux.com/...yABEgKn7_D_BwE

    https://www.hightidehealth.com/male-...mple-pack.html

    https://commedpro.com/product/colopl...sorbent-pouch/

    https://www.hightidehealth.com/actic...nce-pouch.html

  10. #10
    "You may also need to take medications to control metabolic acidosis that can result from large bowel absorbing acids from the urine in the augmented bladder. This also may only be needed temporarily. "

    My urologist has me do a 24 hour urine collection once a year at home and send it to a lab called Litholink. Very easy. They give you a prepaid FedEx mailer to send the specimen back. They send you back a very nice report on your urine chemistry. My pH has been quite elevated (i.e. less acid) every single report since I have been doing it, which is now about seven years.

    I wonder if the situation described by the SCI nurse, with the augmented bowel segment absorbing acid from the urine. I wonder if hipprex would help with this. I hate those pills and stop them probably 20 years ago.

    There have been times when I put the catheter in and either nothing came out or very little, too little than what was expected. I will then have to either trying a new catheter or preferably, since one can keep the catheter in, just take a little saiine and push it through the catheter, clearing the eyelets. For me, I have had to do this or simply suck out the initial mucus and some urine and then allow it to flow naturally or empty the bladder completely using the syringe, this would require multiple syringefuls.

    I don't know if the mucus I produce, and it is quite a bit is simply bowel mucus, or inflammatory mucus from chronic colonization.

    When I go to my urologist next month I plan on asking for a gentamicin Rx and I'm going to try a program of instillation. I will be curious to see if this results in less mucus. If so, then maybe it was due to more inflammatory debris rather than bowel mucus.

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