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Thread: To augment or not to augment?

  1. #1

    To augment or not to augment?

    Two urologists have recommended bladder augmentation surgery in the very near future (within six months) and I am trying to decide if it is for me. I've scanned this forum and am daunted by much of what I have read. The procedure itself sounds pretty grueling and the results seem unpredictable.

    I'm a T11 complete para, three years post-injury. I take 30 mg of Ditropan XL daily but leak by 200cc's. I limit my fluid intake and cath what seems a million times a day but am still incontinent several times a day. I'm fed up with the incontinence and would love to be relieved of that burden but that's not the biggest issue for me.

    My bladder pressures (while on medication) rise to between 80 and 100. Both urologists insist that my pressure levels are putting my kidneys in danger. As of Spring 2005, there was no sign of kidney damage or strain. Ultrasound was negative, functional tests normal and good.

    I'm trying to assess how serious the risk to my kidneys truly is. Have any of you been advised to have a bladder augmentation BECAUSE OF PRESSURE and not done it? How have your pressures increased? How quickly? Has anyone opted not to have the procedure (recommended for any reason)?

    I'm also wondering about alternative medical approaches. I'm reasonably sure other urologists will recommend the same thing as the two I've seen. But what about outside the western paradigm? Anyone heard of anything in Chinese medicine or homeopathy that might address the spasticity in the bladder that's causing the pressure? Anyone have any experience with it?

    And finally, I'm trying to assess the potential downsides of having the surgery. From other posts, I've heard of the GoLightly (sp?), nasal tube, pressure sores, post-op lack of food and water, mucous in the bladder, odor, post-op weakness, and only limited improvement of bladder capacity. Am I missing anything?

    Thank you so much. I'm so glad you all are here.

    lyena

  2. #2
    Hi Lyena,

    I've been a T-5 complete for 26 years. I used to use those male condom catheters in between intermittent catheterizations. But they kept coming off so I kept putting them on tighter until after a few years I could no longer "naturally" drain at all. Today I don't leak a drop. I guess my bladder sphincter tightened up so well that if I don't catheterize in time I'll blow up! Not actually blow up but something bad will happen. Kidney backup etc. My bladder must have stretched out (lots of beer drinking!) to the point where I can now easily hold 1000ccs. I prefer it this way as long as I don't fall unconscious and am unable to catheterize. No more wet pants or beds etc. I would hate to have to use those condom catheters again. Always being connected up to something takes away the freedom to move around and worrying about them getting crimped and falling off and being wet again really doesn't appeal to me either.

    So it's possible to stretch out the bladder so that it can hold more. Although some people may have neurogenic bladders and others like me I suppose have flacid bladders. Whether I changed my bladder from a neurogenic to a flacid because I continually kept it overfilled I don't know.

    The point I'm getting at is for you to slowly increase the amount you have in your bladder until it stretches out some. I realize the doctors are saying that your bladder pressure may be harming your kidneys so you want to be very careful. Last year I had an IVP done and the urologist said I have the kidneys of a 30 year old and I'm 50. Maybe I just got lucky and didn't do any damage to my kidneys.

    Perhaps you could suggest to your doctors that you use a Foley catheter and keep it clamped until you're slowly able to build up to the point where you can hold a reasonable volume like 400-500ccs. With the aid of Ditropan XL and making SURE that you don't have a UTI you may be able to pull it off. I'd go nuts if I had to catheterize with only 200ccs in me. Or even 500ccs.... what a waste of time!

    But everyone is different so you need to find out what can work for you. My sister has an able-bodied girlfriend who must have a real tiny bladder. She needs to go probably after a mere 100 or 200ccs. It's ridiculous.

    You must have had a few UTIs by now. While you were taking the antibiotics and/or just after you got done taking them and when you knew that you were infection free did your bladder still act the way it's acting now? A UTI can wreak havoc on your bladder making it spasm real bad. It's possible that a mere bacterial "colonization" can cause your bladder to spasm too. Make sure you don't have a persistent UTI that the doctors are missing. Ask them to do a very sensitive and thorough urinalysis.

    I've read here about those who've had bladder augmentation surgery by using a part of their bowel which creates all that nasty mucous. Some descriptions of near Boston creme consistency were enough to make me almost hurl my lunch. I would REALLY try to avoid that... if at all possible.

    Have you tried a Foley catheter yet? One that you kept clamped shut so you could retain or even gain some bladder size or volume?

    Before getting that augmentation surgery I'd look into a Supra Pubic or something else first.

    You really need to drink enough fluids to keep yourself well hydrated and healthy. Seems like you're in a Catch 22 situation. I hope you and your doctors can figure out something to give you some relief.

    Hopefully the SCI Nurse will advise you with some proper medical advice.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  3. #3
    Lyena,

    Yes, your pressures are very high (normal would be 40) and have great potential to cause kidney damage due to backflow of urine.

    Please review this post which talks about urodynamics, high pressures and their effects on the kidney.

    http://carecure.org/forum/archive/index.php/t-3322.html

    You will note that your kidneys could have significant damage before you see a change in your BUN and creatinine blood tests. HIgh pressures is one reason why augmentation is performed.

    There are some other medications that could be tried (such as adding imipramine or using longer acting meds) but I don't think that would be sufficient to change your pressures that much.

    Also, I am not familiar with any alternative medicines that would address this. Perhaps others can add more.


    AAD

  4. #4
    I am still balancing out from my bladder aug on Sept 13.

    I first had to wake up three times during the night
    to cath but am now down to one.

    I cath maybe 5 times from 8 AM until 10 PM

    I am very glad I had it done!

    I was leaking between 150cc and 200 cc.

    Joe
    And the truth shall set you free.

  5. #5
    Another alternative that hasn't been mentioned is an indwelling catheter. But that is a second best option if you have hand function and can cath yourself. The recovery from surgery is a bit uncofortable but I've never seen the outcome fail.

    RAB

  6. #6
    I was in a similar situation - constant utis, leaked at low volumes, always wet. Life was unliveable - till I got my augmentation (also got the mitro).
    Now I almost never leak (occassionally night b4 my moon starts, and if I let my bladder get way full 1200cc+). Honestly, i'd call it a miraculous proedure.
    It is a rough surgury, and the recovery time for your bladder to get up to speed is quite a few weeks/months. The mucous may sound gross, but it's DEFINITELY better than always sitting in/worrying about piss.

    I highly recommend this and please feel free to ask anything.
    BTW, it's been 10 years.

    Peace
    "We must become the change we want to see in the world." Gandhi

  7. #7
    Thank you all so much for your responses. I do have a neurogenenic bladder so I don't think "stretching" my bladder with a clamped indwelling is going to work, not to mention how radically that would increase my pressures. And I've been so prone to UTIs that I can't imagine having an indwelling on a regular basis. I usually get an infection within a day of an indwelling's arrival. Long term, I'd be sick as a dog.

    RAB -- you mentioned that you've never seen the outcome fail. I had thought that the outcome was pretty secure until I read a post here from someone saying he only gained about 200ccs (going from max. capacity 200cc to 400cc). The thought of going through all of this and then only being a little less incontinent makes me shudder. How do you define "fail?"

    Also, NoDecafPlz is still recovering and he's nearly two months post augmentation. Does anyone have a sense of average recovery time? My doc said up to two months and I'm looking for a window in my schedule (I'm an actress with contracted performance dates) that will minimize discomfort and risk all the way around.

    Thanks, again.

  8. #8
    I've never had a patient with (after a month or two) so little gained. It could have more to do with the surgeon than the surgery. You can ask for references (people don't do that very often, but if the surgeon gets huffy about it, it's a good sign you need a different surgeon).

    RAB

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