I haven't written much lately because I have been experiencing a lot of pain in my bladder. In the last eight weeks I've had two UTIs and this definitely hasn't help the situation. I have been dealing with this issue off and on, mostly on, since September 2010. I've had it least four UTIs since September 2010.
I have been into see the doctors a multitude of times and the majority of them think that my catheter (suprapubic) is pistoning into the back of the bladder and causing the enormous discomfort. Most of the time it feels like my bladder is burning like hell, but lately the pain has gotten so bad that any time is a sudden noise which I'm not prepared for my abdomen spasms and causes a terrible amount of pain. Back in October a nurse practitioner prescribed a medication which helps with the burning. It turned my urine orange and if I took two of them, which was what the prescription called for, it looked like I had been bleeding. Anyway, I found that if the pain was intolerable I could take one in order to get it to a more manageable level. Well, two of the doctors I have seen (I see a team of doctors, so I don't always see the same ones) think it's good that I am able to minimize the pain, but this medication (which I can't remember the name for right now, but I will get tomorrow when I have access to my medication) cannot be taken on a regular basis. It's not a narcotic, that much I know. Knowing that it wasn't good to take it on a regular basis, I chose to take it very sparingly and just took the last one of the 30 today which I was prescribed in October. Right now I'm on an antibiotic therapy for a UTI which presented with an almost unprecedented amount of blood in my urine. I bled for three days, but thankfully we were able to stem the flow of the blood with some aggressive irrigation. The only reason I knew how to do this was because this happened to me in October and I ended up having to go in to the clinic because the bleeding wouldn't stop. I'm at a point right now where I am having a hard time leaving my house to do anything other than go see the doctors. In fact, the last couple of days had been so horrific that all I have pretty much done is watch television while tilting back in my wheelchair. One of the doctors came up with the idea of putting some sort of device on my catheter so it would be pulled tight enough not to allow the catheter to rub against the back of the bladder, but not so much that it causes other problems. I've tried two different methods of doing this and unfortunately it really hasn't solved the problem. Whenever I tilt forward to get into a driving position it seems to put more pressure on my bladder and it starts to hurt. I've had people check the tension and they tell me they can get two fingers under the catheter, but it still causes discomfort. The bladder pain seemed to manifest itself more whenever I allow the technicians to install the reclining feature onto my Permobile in August. This is the feature which allows the back of the chair to lean back for pressure relief. In the past I have always used just the tilt mode, but they talked me into it. Now I'm in a Catch-22. When it starts burning I sometimes get relief by slightly reclining back backward in order to take some of the pressure off my bladder. I talked to some of the technicians about taking the motor off my chair which enables this function and reinstalling the manual way to adjust the back of the chair. I'm a little worried that this won't solve the problem now that it has progressed to this point. Usually I try to get the back of the chair in a position where it won't hurt and then I try to avoid reclining at all costs. Unfortunately that's not always easy. It's very simple to accidentally slip in to the reclining mode and accidentally move the back of the chair. If it moves a slight little bit it seems to cause problems. Either I have difficulty driving the chair effectively, it puts an inordinate amount of stress on the inside muscles of my neck or it allows my butt slut little too easily. Just to give you a little bit more information, not that you really need it, but I have really good sensation and I know for a fact that my urine is draining while I am in the chair. Whenever the flow of my urine isn't the best thing that I can tell, so I get it corrected. I used to get some relief in bed, but lately the pain is lingering far into the next day. Today I'm actually considering taking a Tylenol 3 in order to go out and do some of my own shopping. I have an appointment with a urologist on June 6, but unfortunately they didn't let me in with the spinal cord urologist. I'm hoping that these urologist will have a pretty good idea of what we deal with, since the spinal cord population at the hospital where I get all my work done is extremely large. They did do sonograms in September which didn't show any stones in my bladder, but I did have a 9 mm kidney stone which is not affecting urine flow. I have written all of this and haven't actually asked for anything. That just shows you are my mind is right now. I would like to have any feedback, ideas, or suggestions. You guys are great to bounce things off of. One more thing, I did have some success a while back with taping the catheter onto my abdominal binder, but even that doesn't seem to work as well as it did. Thanks for reading, Quadius PS there is most likely going to be some errors in this. My voice software isn't working as well as it used to and I really don't know if it's my diction or the microphone or sound card I am using.
