I sent a message to my doctor's practice this morning with some questions. Specifically, my doctor told me that I could attach a valve to close off the catheter so as to use my bladder as I'm best able to not have it completely deteriorate, and then finish emptying via the catheter (actually, I had to ask...he offered no such advice.) His only admonishment was to not let my bladder get too full so as to keep the pressure down to prevent catheter leakage. Now I want to know how soon after this thing is installed I can try to get some of the muscle and control back (in other words, when will the seal be good enough to put stress on it.) I got a responding phone call from a different doctor's nurse. I explained the above (that my doctor had already OK'd me doing this) and that I did not want to get caught between the my doctor's practice pointing me at the SPC Installer and vice versa when it came to figuring out when I could start putting stress on it. Long story short...no one wants to make a decision on anything or put forth any data or just go find the damned answer. We talked about how some patients lose bladder function after only being cathed for a couple of weeks, and how I'm at week 5...so her recommendation was to wait for my next appointment 6 weeks from now to ask the doctor!!! I just about lost it on her. I asked how that could possibly be a reasonable response, and how much worse off was I likely to be by then??? *silence* Then an offer to send me a pamphlet on how to do Kegel exercises. And that appointment 6 weeks from now was only made because I asked when the first follow-up was gonna be, and no one had scheduled it...so we made the appointment when I was on the phone. Once again, I'm on my own to decide what's the best course of action. This is not this practice, this seems to be the entire industry. My doctor didn't even raise this SPC procedure as a possible solution...I got it off of the web and took it in to him (even though he has some number of patients who have had this done.) I'll talk to the folks at the surgery center tomorrow and hope for a better response. Other than that, I've read that some patients get this procedure to bypass temporary urinary track issues (healing from various surgeries, etc), and they never have a collection bag...just an Open/Close valve, because their bladder works fine and serves as the collection bag. Urologist websites say "You may have a bag or you may just have a valve when you leave" when they discuss doing this procedure. So I should be good waiting a few days. I want to wait that long anyways to let things settle down from having that cath inside me for so long. I hope I don't pee my pants or the bed when this thing is removed. No one has warned me one way or the other. This is akin to when they first put my catheter in, strapped a bag to my leg, shoved me out the door and said "See you in a week!" There were no instructions on use, cleaning, changing, or anything else...nothing verbal, nothing in writing. We're a smart group of people on this forum, and can do a reasonable job of looking out for ourselves. I can only imagine the fear, uncertainty and anxiety so many others must go through who are more dependent on the care of purported professionals. Blind trust with doctors will friggin' make you go blind.
Understand this is not about all doctors, there are a few who still care about others, Before they put these stents in me I went online investigated, I even went to the stent manufacturers who were surprisingly honest about why aspirin and exercise were just as good a stent treatment, this is why I refused to just let them go in and place them, but they lied and said they were just going to look around,I woke up medically molested and shortened lifespan. I went to medical sites on research like Emory, Yale and one very famous hospital I can't recall. What is the name of the procedure your having? I see what I can find about the research on that. I also went to Mayo Clinic looking. All online.
I've already researched the heck out of it and it's scheduled for tomorrow, so be gentle with posting any horror stories. Actually, everything I've read has been 99% upside. The only negative stuff has been on forums such as this one where folks discuss such procedures, and a few have had issues. Given how I have tolerated the indwelling cath for this long, I should not have the problems that they had. I am getting a suprapubic catheter. Regarding stints: My pastor (now deceased) was pushing 80 and he had stints installed. He was like a new man. Suddenly he was fully oxygenated, and it showed. He was great for about a month. Then something happened with them, and he went from being a young 80 year old to dragging ass. Then he got heart complications, had a prolonged and very painful downward spiral, and died. In the middle of all that, his wife died of liver cancer, most likely caused by a blood transfusion she received years earlier during her hysterectomy. The whole thing broke my heart. I was a pallbearer for both of them. I loved that man. Such a good pastor.
I found this but it's probably not what you need, not many alternative studies seemed to have been done, but don't give up you never know. https://www.bing.com/ck/a?!&&p=0cc8...ZWQubmNiaS5ubG0ubmloLmdvdi8yMTk1MzczNC8&ntb=1
I'm sure you have and I know how frustrating this can be. Its always something once we start aging but I still seek what I can to help remedy it as best I can. Sometimes it works sometimes it doesn't.
Sadly, the vast majority of first person forums I found on suprapubic catheters were MS patients. Loss of bladder function like this is not necessarily an aging thing (mine is not a prostate issue.) Sometimes it's caused by kidney stone damage. Sometimes it's caused by nerve damage (neurological incontinence.) MS patients get the double whammy of neurological incontinence AND loss of muscle coordination, so--being unable to self cath--this solution is about the only one available to them. Hence the preponderance of SPC discussions on MS forums. I did encounter one woman who got off of the self-cath train and had this procedure done, and was elated at her new-found freedom.
Thanks, Hedi. You are exactly right. There may be other contributory issues, but the bottom line is that nothing else is gonna remediate the totality of symptoms in a manner I can abide. And whatever practice I go to, it seems that I'm pretty much driving the train, hoping that the medical input I get (plus the research that I do) is sufficient for making an intelligent decision. And as I've said (pretty often), this procedure is almost passively reversed. So if technology catches up with my malady, I'll be ready to take advantage of it.
I read about spinal problems that can cause it too but skipped over that one because it scares me. I know hubby loss his urine and bowel when he broke his back, the unjury was pressing on the part of spine that controls both. So he had no control of either one till his surgery which was major but his was major injury..
So I got this thing done. The worse part is having the old indwelling catheter removed after having been in there fr 5 weeks. I'm spotting blood and constantly feel the STRONG urge to go...but I got this other cath in, so there's no bladder pressure and no urine. I hope it subsides soon. I'm glad I got this done so that another cath wasn't immediately shoved up there to replace it. The surgery went fine. No problems or major discomfort whatsoever. The process was interesting. The give you the mild still-awake sedative, they numb the site, then they give you a contrast dye and the process is x-ray guided. If need be, they fill the bladder with a saline solution. I did not need that. They poke a wire in you, then the insert the next diameter up, then the next diameter up, until it's large enough for the cath. You can feel some of it, but nothing I would call painful. Now that it's been 4 hours, the site is starting to burn. This too shall pass. I had to hang around an extra 45 minutes as they tracked down my doctor to give approval to remove the existing catheter...they cannot "just do it" on their own, and he did not put in the order when he set this up. I was more than a little upset. I was not gonna leave the place with two damned catheters hanging out of me. I had hoped to have it taken out while I still had drugs in me, but they had worn of. The surgeon told me that they change the catheter every 6-8 months, guided by x-ray. My doctor say he's gonna change it every 4 weeks, guided by a nurse's hand. The hospital will not allow me to set anything up with them directly...they only operate at the direction of a patient's physician (and I had already asked my doctor who the gatekeeper was.) I'll work on it. My doctor knows I'm stubborn, so he may just yield and move onto the next patient. So we shall see how this works out when the dust settles. Once the pain from the old catheter site is gone, I think this is gonna be a big improvement. I can't believe I'm saying that about a tube sticking out of me, but 5 weeks of a regular catheter has shifted my perspective. In the meantime, I'm wearing Depends just in case, until things adapt to the new normal. (Man, I love being on a senior site where I can type a statement like that and not think twice before hitting Post Reply.)
Long term it's gonna be way better. Right now the lidocaine has worn off and it burns like a big dog. I was told to take Tylenol.
Yeh, we're in the brave new world where they're afraid to give pain relievers to people who have had surgery while the government drives down the street tossing out needles to junkies like some kind of year-round Santa Clause throwing candy at kids.