I saw my Urologist on Thursday because I have been plagued with at least two (possibly three) UTI’s in the last two and a half months. What a bummer, these infections are causing more and more spasms in my bladder and are causing me to urinate around the catheter many times a day. It’s been twenty-three years since my first SCI, and almost seven years since my second SCI, (nope I didn’t get enough fun from just one, so I had to try another one) and I think I have had maybe three UTI’s in all those years. Of course for years I was able to self cath intermittently. For the past nine months I have had to be cathed with a urethral Foley due to constant leakage after receiving a Baclofen implant. I can’t seem to ever get over the bladder infections these days. I showed positive for yet another infection when I got my latest results on Thursday (GRRRR!).
It’s a real bummer to have this Foley in place 24/7, but what other choice do I have? Diapers are strictly not an option in this girl’s life. No way, no how! I am currently trying to convince my Urologist into changing me over to a suprapubic cath, but he is hesitant for the time being, stating that he feels a suprapubic should only be considered as a last resort! He did relent and say that if I was still uncomfortable with big time bladder spasms and big time urethral discomfort by December (my next scheduled appointment), he would consider placing a suprapubic at that time. Yeah right, like these things are likely to change for the better in six months? I doubt it; they’ve only gotten worse over the last seven months. I’m constantly miserable (urethral irritation) and always leery of leaving the house anymore because of painful spasms and leaking at the most inappropriate times. I hate this being cathed 24/7. It’s almost like a prison sentence in my humble opinion. Oh for the days when I could walk and pee like the so called normal folk. Does anyone else ever just get plain old sick and tired of catheters, digital stim, and all the other lovely things that go with SCI? I’m at the point currently where I am just fed up with the whole mess. Sorry about that little tantrum there, I’m over it now. I just wanted to vent for a sentence or two, LOL! Seriously, I just get tired once in a while with all the little extra things that are necessary for life post SCI. This isn’t how I saw the rest of my life a bit over twenty-three years ago, but then which of us ever did see our future this way? Hmm, I bet not a single one of us did!
Anyway, my questions are these?
Is Macrobid safe to use on a daily basis for the long term? My Urologist tells me that I should be taking this medication for life now. Is this true in anyone else’s life? I was sort of stunned when he prescribed this course of treatment. I have had a serious MRSA infection twice previously, both times MRSA meningitis in my catheter that delivers my Baclofen to the intrathecal sac, and on into my spinal fluid and naturally up into the brain. I nearly lost my life both times to these infections. I was in a coma for over two months with the last outbreak and I was on Vancomycin, Aztreonam, both by IV PICC line along with Rifampin orally for over nine months (I just finished with therapy almost four weeks ago).
It actually scares the freaking willies out of me to think of going back on another antibiotic again. What about MRSA becoming resistant in my system? Perhaps an SCI nurse might be able to answer my question and put my fears to rest.
My second question is this:
Are there folks out there who can give me some input about suprapubics and whether or not they cause fewer spasms in the bladder in their experiences? Are you happy with your suprapubic? What are side some effects and complications with a suprapubic as compared to a urethral Foley?
Oh, one more question, I want to know if it is safe to resume sex while using a urethral Foley as a woman. It’s been almost ten months , and I want to get that part of my life back too; if it’s safe that is! My visiting nurse says no, but she is very strict about every aspect of my care. She is cautious to the extreme and overly so, even my Urologist agrees with that one. My nurse told me I couldn’t go into our pool for water therapy with a urethral Foley and my doctor tells me it’s no big deal. I didn’t remember to ask my doc at my last visit because I was so freaked out about the Macrobid thing!
Let me know about your experiences with a suprapubic folks, will you? I want to have as much ammo and knowledge for a go at round two with my Urologist (six freaking months he wants me to wait, I don’t think I’m gonna make it that long).