I was forced to get a Suprapubic catheter thanks to an ear responsible home health agency nurse blowing up the balloon in my urethra for the first time in 36 years which stretched my urethra beyond repair. I needed surgery and was given the option for either a Bladder Neck Closure with a suprapubic catheter or an Ileal Conduit. I chose the former since it was much simpler (less than two days in the hospital... actually an overnighter) while the Ileal Conduit is a huge, risky surgery and usually for those who have been diagnosed with bladder cancer.
5 months later (last November) during a cystoscopy my urologist sought a suspicious growth for the first time but didn't think it would be anything serious. He scheduled a bladder biopsy for this year which I had done on February 25. I got the news just a few days later that it was Superficial Bladder Cancer and now he wants me to have the bladder removed so any cancer cells do not invade the bladder or travel elsewhere. I can't believe my luck and now I am just down and out after I was happy with the Suprapubic catheter (even though my urethral catheter was working fine before I was hurt) and now this. To add insult to injury, when I was in the hospital for the bladder biopsy I had acquired hospital acquired MRSA in my bladder and after two different antibiotics and two different doses of oral antibiotics that it was said to be sensitive to (and I saw the culture and sensitivity report). I feel like my bladder is on fire and my home health agency nurse (a good one I have had for over a year and a half) took a specimen to the lab last Thursday morning to see if it is still present (which I'm sure it is because these are the only symptoms I get with a bladder infection) and the lab lost the specimen! I had to have another one taken over today. Now I have to wait for results again for most probably put on IV antibiotics with Vancomycin. I just lost my best friend (my Golden Retriever daughter) and grieving over that. Ironically, we were both diagnosed with cancer during the same two-month period of time. ~Lori C-4/5 complete quad, 38 years post On Tue, May 8, 2018 at 4:05 PM, Don Price <[email protected]> wrote: > Ron (and all): > > I'm c5, 36 years post injury and got the suprapubic a little over a year > and a half ago. For me it has been one of the best decisions I've made. If > I could turn back time I would've done it years ago. For the preceding 34 > years I wore a condom cath and legbag. My bladder always voided reflexively > and my residual amount (urine not voided) was not too much. However, > having any residual urine sitting in the bladder is a perfect setup for > UTIs, and I got my share. Over the years, as my bladder slowly stretched > out, my residuals increased and so did my UTIs. > > Two years ago I was having multiple UTIs, which caused my penis to do the > "frightened turtle," when I peed, which, in turn caused my catheters to > constantly leak. I was at my wits end and VERY frustrated. That's when I > made the decision to look into a suprapubic (a number of my quad friends > had them already.) Looking back, I'm not sure why I was ever adverse to > getting a suprapubic. I think it seemed "unnatural" to have another hole in > my body. An external condom seemed more "normal." Now that I have the > "supertube," as I've heard it called, I see that pissing myself or > constantly having UTIs was more unnatural than a small tube through my > lower belly. > > I haven't had a UTI in over a year! (*knocks on wood*) That's a record for > me! > > So, the actual procedure was a breeze. It was outpatient surgey. I went in > at 10am, they knocked me out for a few minutes and when I woke up the > surgery was done. My buddy drove me home by 2pm. No pain, no complications. > Of course, that doesn't mean everyone has the same experience. > > The suprapubic is simply a foley catheter that goes into your bladder > through your pubic area rather than through your penis/urethra. My tube is > 16fr, but they can be different sizes (one of my friends has a 24fr > suprapubic.) You'll want to discuss the size with your urologist--I'm > really not sure why the different sizes. Anyone? It might have to do with > how much sediment you void--some people seem to produce more sediment which > may clog up the tube, hence needing a larger tube. > > The suprapubic should be changed by a qualified medical person about once > a month. I have a homecare nurse who changes mine on a monthly visit. The > site of the entry hole (stoma) should be kept clean and dry as much as > possible. I still have some light bleeding and weeping over a year after > the surgery, but it's very minor and the care is minimal. Some guys use a > small gauze pad around the site to help keep it dry. I don't have sensation > at the site of the suprapubic, so I can't say if it hurts. I do know it's > sensitive when I wash it. > > I hook up to a legbag during the day and a nightbag at night. I can drink > as much as I want without ever having to worry about a leaky condom > catheter (hooray!) or AD from a too-full bladder (double hooray!) Just make > sure to empty the bag as needed. Also, if the tube becomes pinched or > clogged it's possible you could get a little AD, but that has not happened > to me. > > If you're sexually active it sure is nice having your penis free and > unobstructed for sex. My girlfriend is a fan of the suprapubic--no more > bladder accidents during sexual activity. My urologist assured me that the > surgery would not affect my ability to get a reflexogenic erection, as the > surgery goes nowhere near those nerves. However, for about 6 months > post-surgery I noticed my erections were not as good as pre-surgery so I > was concerned. That all changed with time, and everything is back to normal > for me--I'm very happy. > > Of course, *cue standard disclaimer*: everyone is different, so be sure to > check all your options. > > Best of luck to you. > > Don > Tempe, AZ > C5 > > > -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
