Hi Dollbug, First, let me tell you how my heart goes out to you and that its clear you must be a wonderful mother. I am sure your son appreciates your help and sacrifice, even if he does not always show it. We quads can get frustrated sometimes and express it as anger. Best thing you can do is get others to help, so you can get a break on a regular basis.
For my first two years (I'm 9 years post, now), I was never able to self-cath, but needed to take care of myself, since I had no help most of the day. I had a Supra-Pubic (SP) tube and that helped, since I could empty the bag alone. However, I was always warned it was not a permanent solution because it increases the chance of bladder cancer. Aside from that, I had at least 2 trips to the Emergency Room in full Autonomic Dysreflexia (AD) distress because the bladder hole got out-of-line with the outer (skin) hole when trying to change the tube, so my helper could not replace the tube. Not fun. For that whole two years I also had almost one-long Urinary Tract Infection (UTI), despite a wide array of anti-biotics, to the point where they red-flagged me (so now I'm *guaranteed* a single in any hospital stay, since they condsider me a carrier/threat). FINALLY, though, a peak with a uroscope revealed the *real* carrier was the big ol' Bladder Stones that the UTI bacteria had taken to hiding in. During that time I'd conferred with multiple Urologists about possible long-term solutions for dealing with that constant yellow flow. The guys at Boston Medical Center (BMC), a teaching hospital for Boston U. Med school where I did my rehab, were hot to "end-run" my bladder with an Ilial (sp?) Loop (IL) procedure, to give me a urinary stoma. I got a second opinion from a guy at Mass General, who agreed it would be a better long-term solution than the SP tube, though I should mention that the doctor in charge of rehab at BMC thought it was "too radical, tantamount to malpractice." Nonetheless, I finally opted for it. The morning of the IL operation, the head Urologist asked if I would be having my bladder removed (they were already removing my bladder stones). He said that if I did have it removed, then I would almost certainly lose sexual function (SURPRISE!!). I was active (ok, not really *that* active, but active nonetheless), so I said leave it. The operation went well, but they also didn't mention the 2+ week hospital stay to recover, the whole time which my new stoma bags leaked. They tried all kinds of adhesives and I tried even more after I went home, but none helped until one of the visiting nurses asked if I'd tried an ostomy belt. Sho' nuff, that was the solution! The belt helped tremendously, but I was still plagued with leaks that should not have happened. I kept asking ostomy suppliers about different options, with many failed experiments along the way, until I finally started using Torbot Bonding Cement. The stuff is great! Most times now, I can go as many as 5 days without changing (and without leaks), just flushing the bag (and alternating long-term, large-capacity, latex leg-bags I get from Concepts In Confidence). I had other problems, though. That bladder they left behind was then a closed system (i.e., not getting flushed with urine). Probably because it had been a haven for bacteria for so long, it started generating this awful-looking, almost odorless brown gunk, the color and consistency of a coffee milkshake. Eventually, it filled my bladder, causing AD and sending me to the ER (where the doctors were fascinated and mystified). After that discovery, I had to cath to drain the gunk about every month ...till about another 2 years passed and the gunk had collected and (apparently) thickened so much it was not draining. My old urologist at BMC had moved-on and the new one assured me I could still have sexual function if he removed the bladder and left a portion of it, a stump. That did bring relief, once more, but sexual function was not what it used to be. Oh well. Anyway, yes its been a long road, but I have relatively few incidents (leaks) these days and NO UTI's at all. Can't exactly say, "I love my Stoma," but it does work for me now. Hope that helps, bob quinn ________________________________ From: Dollbug <[email protected]> To: [email protected] Sent: Saturday, March 14, 2009 12:16:53 PM Subject: [QUAD-L] Super pubic vs foley or cathing My 22 year old son, who became a quad about 6 months ago, has had numerous issues since initial hospitalization. The most recurring is UTI and some bladder infections. He was in a hospital and rehab for 3-1/2 months total. He had a foley for 2 months initially. After the 2 months, cathing began every 4 hours. About a month after cathing began he started to urinate between caths. He complained of the mess and they put a Texas catheter on him and still cathed every 4 hours. After about 3 weeks of being at home (I was cathing and dealing with the Texas catheter) his penis became quite raw. About 3 times more urine coming out of him was going into the catheter bag as opposed to cathing. I asked that a foley be put in due to all this. A few people have told us a super pubic will cause a lot less UTI's and much less invasive on the body. Please share your views on a super pubic versus a foley or cathing. Many thanks for any replies!
