Originally Posted by
s.m.kelley
How are you high-level quads managing your bladder. Do you have a urostomy, suprapubic, Mitrofanoff, condom catheter, or maybe something I've never heard of? How is it working out?
I?m a 42 years old, C 3-4 incomplete quadriplegic, 19 years post injury, with no movement below my shoulders. I feel pressure sensation everywhere. I can feel when I am urinating. I wear an external condom catheter 100% of the time.
I have had problems urinating while being up in my wheelchair. It doesn't matter if I?m in the sitting position, laying completely flat, or tilted back. This leads to autonomic dysreflexia, UTIs, and me not wanting to get up in my chair. My bladder drains okay while laying in bed but I don't think it ever drains completely. I have had lots of UTIs over the past three years. Before that I was 8 years UTI free.
I have been catheterized a few times lately after I feel myself urinate or as my doctor says ?kick off? to see how much urine remained. There was still 300mL, 550mL, and 350mL. Those are large residuals that can result in urine reflux through the ureters to the kidneys. You definitely need to change the way you are managing your bladder.
I drink close to if not a gallon of water a day. That is a lot of water that probably isn't necessary and could be setting you up for hyponatremia, which can be life threatening.
I use a leg bag attached to my lower leg while in the chair and a large drainage bag the rest of the time. There have been a few times that I have needed to catheterize and the catheters would not go in properly or easily and was extremely uncomfortable to have done. I had a (false cavity? Probably a false passage) I believe they called it, but was removed in my most recent surgery in 2017. Catheterizing has become much easier.
I had a sphincterotomy in 2002 which may have helped for a while but I cannot remember.
In 2014 I had a double sphincterotomy. This surgery was unsuccessful. I lost a lot of sensation that I had where I would be able to tell people whether I was going to urinate or if it was safe to lift me and move me around without having a drainage problem. Before and after showers is when this came in handy.
In 2015 I had another surgery done to my bladder which was to go in and clean up scar tissue and sliced some more muscles in the bladder that the doctors thought were spasming causing the urine from being able to release. The surgery was unsuccessful.
February 2017 I went to the hospital because urine was not draining due to blood clots. I had been catheterized a few days before by a urologist which caused bleeding. I had 1.8 liters of fluid in my bladder when I got to the hospital. I was treated for bladder and blood infections with multiple kinds of bacteria.
October 5, 2017 I had surgery on the bladder neck. The surgery was unsuccessful for the most part but they did remove a part that was keeping the catheter from easily inserting. Catheterizing is much easier now.
December 11, 2017 I had a urodynamics test done to see exactly how well the surgery worked. The doctor realizes it did not work and has given me some suggestions to think about and get back to him.
The doctor told me to think about getting a urostomy which would take the bladder out of the situation. This is a big surgery that requires a long recovery period. You may want to consider approaching blander management change with baby steps. A supra pubic catheter is a relatively simple procedure, that may help you avoid or at least put off a more aggressive approach.
Get a suprapubic and try to manage leaks from my penis with medication or close up the urethra. While the surgeries you have had may make leaking from the urethra more likely, it isn't a given you will leak, since urine is constantly draining through the supra pubic catheter. You can take anticholinergic medications that decrease bladder spasm and leaking.
I?ve read about Mitrofanoff on here. My doc didn't mention this. Would it be a choice for my situation? You doctor may not have mentioned the Mitrofanoff procedure because it requires catheterization. At C3/4, self catheterization may be difficult requiring attendant care to cath you on a regular schedule, much like intermittent catheterization.
This wasn't suggested by the doctor but how about on days I plan on getting up in my wheelchair I use a foley catheter (catheter with the balloon at the end) and then when I get back in bed switch back to the external condom catheter to hopefully reduce chances of infection. This management technique can get expensive, using a new foley catheter every day, since foleys should not be reused. Sterile foley cath kits are expensive. Usually an indwelling urethral catheter is worn 24/7 for about 2 weeks before changing. Supra pubic catheters are changed about every 4 weeks, ideally using sterile cath technique
Recommendations? Give the supra pubic catheter a try. If it doesn't work for you, you have at least bought yourself some time to figure out the best way to manage your bladder. The stoma will heal closed very quickly after the catheter is removed. I would suggest that your doctor use the Poiesis Duette catheter when he places the supra pubic stoma or at least uses this catheter for your first change which is usually done one month after the procedure at a follow up appointment in the doctor's office. This catheter has two balloons with the drainage eyelets between the balloons. Many find it more comfortable and have fewer spasms with this catheter. http://www.poiesismedical.com/products/duette/
Any questions for me, to help you help me?
Sean K
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