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Thread: problem with bladder

  1. #1

    problem with bladder

    Hi. I have had to use catheters for over 10 years, due to my genetic defect and SCI. In 2006, I had a mitrofanoff done and over the past couple of years, have had trouble with bladder accidents. I have been on EVERY bladder medicine on the market (currently on Toviaz), and have started to get Botox injections in my bladder.
    The Botox injections were working great up until the last round I got in early September. Ever since then, I have had accidents and constantly feel like I have a UTI (constant urgency, abdominal pressure, accidents, only cathing out a tiny bit every 5 minutes, even though i feel like I have to go very badly). I have never had a problem with the Botox before, until now.
    My urologist told me that he was going to have me stop taking my Toviaz for 10 days and go back on it to see if that helped, but if it didn't, I would probably have to have the Botox injections done over again, because it might have been a bad batch.

    Is it common for Botox to work for a year and then suddenly stop working? I get the injections every 6-8 months. My uro told me that if the Botox didn't work the next time, then we'd have to resort to surgery, and most likely that would be a permanent urostomy. He doesn't want to do an augmentation, due to the risk of short bowel syndrome, since I had a total colectomy back on 2008. I don't want more surgery, but don't know what else to do about the bladder accidents.

  2. #2
    Senior Member
    Join Date
    Jun 2005
    East Bay in the San Francisco area
    Yes, Botox can work for a time and then after a while not be as effective as it once was. Before I had a supra pubic catheter placed, I managed my bladder with intermittent catheterization. I had 4 courses of Botox injections. The 4th course did not work at all. Some people do not experience this problem and have very good luck with Botox.

    All the best,

  3. #3
    Okay bladder augers and mitranoffers- have you had Urodynamics or a fill study with pictures to see how much you hold, pressures etc.. with some pictures to see what is going on. Check for UTI- I know hard to say with bowels involved but this could be a symptom of that. Everyone is different and antibodies can build up against it. I have some patients it works for a year and a half and I can think of one it didn't work at all the first time or the second time. More research needed!! Also, we use Botox A but there are other Botoxes (sp)out there- quite a few- maybe your doctor would try those and maybe they would work.
    They say you can do a test on the forehead- we use this for spasticity patients- like the hollywood movie stars get and if it works on forehead it should work everywhere and if not- won't work on bladder.
    As it is now officially FDA approved for the bladder, we will have more and more experince and will get all the data.
    The other thing- is intravesicular Oxybutynin- again, some swear it is the best thing since sliced bread and others doesn't seem to work- you basicallly crush the Oxybutynin mix with sterile water and cath & empty bladder, then instill it in and let it sit in your bladder until your next cath or at least twice a day. Most make up a large amount (couple of days worth) and refrigerate and when needed let it acclimate to room temperature, shake it and draw up what they need- as sterile and clean as possible.
    Of course, it can be irritating to the bladder but those who can't stand the dry mouth and before Botox we did try this more often. Off label FDA- discuss it with your doctor/NP/PA etc.... Search intravesicular Oxybutynin or Ditropan- it is off label FDA so I have to find out what the latest rule for us is!!


  4. #4
    I have had a urodynamics and it says I can hold up to 800cc's at a time, but since my bladder tends to spasm at very high capacity, it seems like my urethra and mitro get clamped down and won't leak at a high fill during the test. But.... when I only have an average amount in me, or less, I get spasms that cause me to leak only through my mitro.
    I had read on another post that this might have to do with the docs using my appendix for the creation of the mitro. How come this does that when the appendix is used and not the large or small intestine? Is it because of certain enzymes in the different organs?

    Also, when you do the internal Ditropan, can you used bottled water, instead of sterile water? Or, would insurance cover sterile water to do this? When I used to irrigate my bladder after my mitro surgery, I used sterile water, but the drugist told me that once the sterile water is opened, its not sterile anymore. Finally, do you still get the side effects from Ditropan if you are taking it via bladder? I can't stand the dry throat and dry nose side effects from Ditropan (I had nosebleeds quite often, despite using nose spray to moisten my nasal cavity).

  5. #5
    You have an augmentation you theoretcially need to irrigate it occasionally for post op course and management so the doctor can order sterile water for irrigation get the 1000mls bottle- you shouldn't have any problem and get that catheteter tipped syrine also.Also one bottle will last quite a while and can get over the counter if you want totry it.

    What volume did your bladder have first contraction and what volume did you start to leak? Pressure at leaking?
    It may just be better for you to keep your volumes at that and maybe slowly try to increase but we recommend around 350 ms to 500 mls. Some are lucky and can hold alot more but that is the average bladder capacity even with anticholinergics especially f you had the overactive bladder and had very small volumes before.
    And without UTI. Also you might try keeping volumes lower and then slowly increasing the capacity and see if the bladder will adapt.

  6. #6
    Theoretically, nothing is "sterile" once exposed to air, but medical ,people who actually do procedures use 'sterile" as non contaminated or atleast as little as possible. Since is is impossible to use something without opening we use "sterile" as meaning not touched or contaminated so you do the best you can.So, sterile water is recommended but impossible or very hard to crush medication whci those pills aren't sterile but to put them in the "sterile" fluid is recommended. Your catheter isn't sterile once you open too because it is exposed to air but if you haven't touched it it is still considered sterile. When they open you up to do surgery, it is exposed to air but the sterile field and all the other precautions are still maintained.
    So..mix it by pouring in, refrigerate,open it pour out what you need and close it back up and refrigerate again. That is why you use it when you can and refrigerate.

    And since you are having spasms, I wouldn't advise using regular tap water.

  7. #7
    Should I add some salt to the sterile water to make it similar to urine in my bladder, or would this increase the spasms?

    Also, I haven't had an augmentation, but after my mitrofanoff surgery years ago, my uro told me to irrigate my bladder because I was getting such large volumes of mucus through my catheters from my appendix being used.
    I just want these leaks to stop, so I can get back to using regular underwear, instead of adult diapers.

  8. #8
    This is a very tough topic
    One of my Uroligists he swears by using appendix pieces to do the Motro procedures

    I am iffy about it at this point i still have my old S/P hose and it has it's pro's / Cons

    All of these bladder surgeries are pretty intense because in my life i've met plenty of people who have had either Mitro Surgeries or S/P surgeries and over time we all developed some resistance , bladder problems .

    I was thinking about this yesterday
    ' Resistance '
    I've been on a certain Antibiotic for like a year or longer and I know i've built a resistance to this particular medicine . I am running out of options .

    Someone mentioned mucous residue !!!! I deal with hard sandy stones that even Renacidin does not fully breakdown . Probably tomorrow i'll have to personally do a S/P Hose change it bothers me but I got to take care of my life .
    Good luck to all
    Sincerely ;

  9. #9
    How long have you had your SP GL? Just curious.

  10. #10
    Water is pretty tough on your bladder. It can cause bladder spasm. It is much better to use normal saline (NaCl, 0.9%) for bladder irrigation for mucous or to break up a blockage. Not only does it clear mucous better than water, but it does not irritate the bladder wall the water sterile water will. If you cannot get normal saline already prepared, I have a "recipe" for making it. This is less than ideal (purchasing it) but better than nothing. Let me know if you want me to post it here again.


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