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The unabridged letter I sent my medical team on Oct. 22, 2021 for all of you zebra hunters out there (the chapter features an abridged version)....
[Doctors], after two UTIs in the last month and an alarming incident (detailed below), I’m looping in my entire medical team for this. There is probably more detail than you need here, but I desperately need to crack this conundrum.
UTIs. My frequent UTIs (or suggestive UTIs, if not confirmed at Urgent Care) began in September of 2020. Before that I had a UTI in August of 2019. Anything earlier was random and rare. These incidences have returned with alarming regularity. They occur seemingly monthly, but there can be a gap of up to 8 weeks (or as short as only 2 weeks). When I get these UTIs, I always experience a rapid and sudden increase in frequency and urgency. This is often accompanied by a general lack of bladder control. Upper body strength may decrease. There may be a slight uptick in body temperature. The urine will often turn cloudy (esp overnight) and one or two times it was accompanied by discharge. Of note, I typically experience no pain, no fever, no chills, no sweats, no vomiting, no burning.
Antibiotics. Taking antibiotics results in quick and noticeable relief, and my bladder can feel normal fast, often hours after the first dose and almost certainly by the second day. Marked improvements in urgency, frequency, and incontinence as well as strength (if weakness was a symptom). Indeed, it is dramatic: it’s as if my MS bladder issues all cease, with me urinating normally every few hours. (After years of MS bladder issues, normal is a strange sensation. Also note that I have made no changes to my diet during this time.) I sleep normally and my QOL is good while taking them. Generally, I’ve responded well to Cipro. Bactrim has been problematic, as it may have caused temporary but significant depression the last two times I’ve taken it, uncommon for me. Within a week or two after stopping whatever antibiotic, however, issues begin to return.
Low-dose Antibiotics. To try to curtail the UTI frequency, I started low-dose nitrofurantoin 50mg daily at bedtime in February of 2021. The UTIs still returned, although not as quickly. I took a personal 2.5- month break over the summer (May-July) to see if it made a difference, instead trying cranberry pills and D-mannose but to no avail. Both have since been discontinued. I restarted nitrofurantoin in August before discontinuing in September of 2021 at the recommendation of my urologist.
Other Medication/Treatment. I began on Flomax on Oct. 1. Maybe it’s helping? Unclear. I drink 50+ oz of water reliably every day.
Self Cathing. I started self cathing September 10 after my appointment with [my urologist]. She detected 120ml of urine my bladder via ultrasound after I had purposefully voided 30 minutes earlier. Later in the appointment I catheterized and drew about 200ml. Unfortunately, I have not had consistent success with insertion regardless of type (regular or coude tip, although the latter may be slightly better). To date I have been unable to determine why I am easily successful at times (but no more than once a day), and an utter failure at others (about 80% of the time the catheter stops with about 6” of tube remaining and no amount of deep breathing or coughing helps). This suggests it is not an enlarged prostate issue, otherwise I would always have insertion issues. I suspect I am unable to consistently relax my external urethral sphincter, likely also a reason why it is challenging/impossible for me to use a portable urinal or bottle. To fully void I require sitting on the toilet.
Voiding. I feel “mostly” successful after voiding on the toilet; no sense of feeling full or having a full bladder. My void volume after going to the bathroom traditionally (and after the urge strikes instead of encouraging urination) ranges anywhere from a scant 50ml on the low side to 275ml on the high, averaging maybe 175-225ml. (For reference, the average person with MS has about 130ml after voiding.) Mornings I have little residual urine (<100ml), afternoons a touch more (low to mid 100s). Only before bed, when I initiate voiding despite not necessarily having to go, tends to be higher (around 200). I also experience the most challenge cathing in the evening, again for reasons unknown.
Other Observations. Common sense suggests my two most recent UTIs are CAUTIs [Catheter-associated Urinary Tract Infections], but I’m skeptical. I take safety seriously and have worked vigorously to avoid infection. After my latest UTI, a nurse for [my urologist] observed me cathing to look for flaws and said my technique was textbook. I am anal about contamination (hand washing and hand sanitizer out the wazoo) and I have a system that assures nothing unclean comes in contact with the catheter or sterilized penis when I cath. Also, I understand that for many docs 200ml is the tipping point for self cathing, and then for those volumes it is recommended at once or twice a day. I am also skeptical that my residual urine (often under 150ml) has been the trigger for my sudden spate of UTIs. My bathroom (or diet) habits have remained unchanged for years. For that reason and others, going to a Foley or suprapubic catheter does not appear warranted at this stage without more clarity on why these UTIs are occurring.
Mental Health. In between my most recent UTIs, which were both treated with antibiotics (in mid-September and mid-October), beginning in late September for about 10 days to two weeks, I had a noticeable mental health issue. I had never had one before and there is no history in my immediate family (an aunt is bipolar). There was a mix of paranoia (people stealing ideas from me!), fatalism (destined to die soon from Covid!), and delusions of grandeur (the best idea in the history of the world!) all combined with a severe lack of sleep. After all, I had to get my GOAT idea written down before someone else took credit or I croaked. (Sure, my idea was pretty good, duh, but oh boy.) At the time I did not know I was in crisis; it felt real. I feel totally normal now. A side effect of a lurking UTI? An unexpected reaction to medication (Flomax, antibiotic)? An MS brain lesion gone haywire?
Latest. I saw the nurse at my urologist Oct 14 to discuss cathing issues and another suspected UTI. The dipstick test showed no infection despite cloudy urine that morning (my urine ran clear in later voids that day). Urinary symptoms returned in force that evening, and the following day lit up the UTI Christmas tree on my home dipstick test. I submitted a urine sample, that was found to be positive on several fronts. I’ve included these results below. (Note, that although the urine was cultured, no results were ever posted.) I completed 5 days of Cipro Wednesday. To remove the near-term variable of CAUTIs, I am temporarily not cathing and have urology follow-up scheduled. All of my recent bloodwork has been unnoteworthy (PSA 1.36) other than low lymphocytes (0.4 x 10E3/uL) due to my MS medications.
Thanks for helping me get to the bottom of this vexing health challenge. The needle has moved beyond frustrated into concerned. Let me know if I can provide any additional information.
Dave
[Doctors], after two UTIs in the last month and an alarming incident (detailed below), I’m looping in my entire medical team for this. There is probably more detail than you need here, but I desperately need to crack this conundrum.
UTIs. My frequent UTIs (or suggestive UTIs, if not confirmed at Urgent Care) began in September of 2020. Before that I had a UTI in August of 2019. Anything earlier was random and rare. These incidences have returned with alarming regularity. They occur seemingly monthly, but there can be a gap of up to 8 weeks (or as short as only 2 weeks). When I get these UTIs, I always experience a rapid and sudden increase in frequency and urgency. This is often accompanied by a general lack of bladder control. Upper body strength may decrease. There may be a slight uptick in body temperature. The urine will often turn cloudy (esp overnight) and one or two times it was accompanied by discharge. Of note, I typically experience no pain, no fever, no chills, no sweats, no vomiting, no burning.
Antibiotics. Taking antibiotics results in quick and noticeable relief, and my bladder can feel normal fast, often hours after the first dose and almost certainly by the second day. Marked improvements in urgency, frequency, and incontinence as well as strength (if weakness was a symptom). Indeed, it is dramatic: it’s as if my MS bladder issues all cease, with me urinating normally every few hours. (After years of MS bladder issues, normal is a strange sensation. Also note that I have made no changes to my diet during this time.) I sleep normally and my QOL is good while taking them. Generally, I’ve responded well to Cipro. Bactrim has been problematic, as it may have caused temporary but significant depression the last two times I’ve taken it, uncommon for me. Within a week or two after stopping whatever antibiotic, however, issues begin to return.
Low-dose Antibiotics. To try to curtail the UTI frequency, I started low-dose nitrofurantoin 50mg daily at bedtime in February of 2021. The UTIs still returned, although not as quickly. I took a personal 2.5- month break over the summer (May-July) to see if it made a difference, instead trying cranberry pills and D-mannose but to no avail. Both have since been discontinued. I restarted nitrofurantoin in August before discontinuing in September of 2021 at the recommendation of my urologist.
Other Medication/Treatment. I began on Flomax on Oct. 1. Maybe it’s helping? Unclear. I drink 50+ oz of water reliably every day.
Self Cathing. I started self cathing September 10 after my appointment with [my urologist]. She detected 120ml of urine my bladder via ultrasound after I had purposefully voided 30 minutes earlier. Later in the appointment I catheterized and drew about 200ml. Unfortunately, I have not had consistent success with insertion regardless of type (regular or coude tip, although the latter may be slightly better). To date I have been unable to determine why I am easily successful at times (but no more than once a day), and an utter failure at others (about 80% of the time the catheter stops with about 6” of tube remaining and no amount of deep breathing or coughing helps). This suggests it is not an enlarged prostate issue, otherwise I would always have insertion issues. I suspect I am unable to consistently relax my external urethral sphincter, likely also a reason why it is challenging/impossible for me to use a portable urinal or bottle. To fully void I require sitting on the toilet.
Voiding. I feel “mostly” successful after voiding on the toilet; no sense of feeling full or having a full bladder. My void volume after going to the bathroom traditionally (and after the urge strikes instead of encouraging urination) ranges anywhere from a scant 50ml on the low side to 275ml on the high, averaging maybe 175-225ml. (For reference, the average person with MS has about 130ml after voiding.) Mornings I have little residual urine (<100ml), afternoons a touch more (low to mid 100s). Only before bed, when I initiate voiding despite not necessarily having to go, tends to be higher (around 200). I also experience the most challenge cathing in the evening, again for reasons unknown.
Other Observations. Common sense suggests my two most recent UTIs are CAUTIs [Catheter-associated Urinary Tract Infections], but I’m skeptical. I take safety seriously and have worked vigorously to avoid infection. After my latest UTI, a nurse for [my urologist] observed me cathing to look for flaws and said my technique was textbook. I am anal about contamination (hand washing and hand sanitizer out the wazoo) and I have a system that assures nothing unclean comes in contact with the catheter or sterilized penis when I cath. Also, I understand that for many docs 200ml is the tipping point for self cathing, and then for those volumes it is recommended at once or twice a day. I am also skeptical that my residual urine (often under 150ml) has been the trigger for my sudden spate of UTIs. My bathroom (or diet) habits have remained unchanged for years. For that reason and others, going to a Foley or suprapubic catheter does not appear warranted at this stage without more clarity on why these UTIs are occurring.
Mental Health. In between my most recent UTIs, which were both treated with antibiotics (in mid-September and mid-October), beginning in late September for about 10 days to two weeks, I had a noticeable mental health issue. I had never had one before and there is no history in my immediate family (an aunt is bipolar). There was a mix of paranoia (people stealing ideas from me!), fatalism (destined to die soon from Covid!), and delusions of grandeur (the best idea in the history of the world!) all combined with a severe lack of sleep. After all, I had to get my GOAT idea written down before someone else took credit or I croaked. (Sure, my idea was pretty good, duh, but oh boy.) At the time I did not know I was in crisis; it felt real. I feel totally normal now. A side effect of a lurking UTI? An unexpected reaction to medication (Flomax, antibiotic)? An MS brain lesion gone haywire?
Latest. I saw the nurse at my urologist Oct 14 to discuss cathing issues and another suspected UTI. The dipstick test showed no infection despite cloudy urine that morning (my urine ran clear in later voids that day). Urinary symptoms returned in force that evening, and the following day lit up the UTI Christmas tree on my home dipstick test. I submitted a urine sample, that was found to be positive on several fronts. I’ve included these results below. (Note, that although the urine was cultured, no results were ever posted.) I completed 5 days of Cipro Wednesday. To remove the near-term variable of CAUTIs, I am temporarily not cathing and have urology follow-up scheduled. All of my recent bloodwork has been unnoteworthy (PSA 1.36) other than low lymphocytes (0.4 x 10E3/uL) due to my MS medications.
Thanks for helping me get to the bottom of this vexing health challenge. The needle has moved beyond frustrated into concerned. Let me know if I can provide any additional information.
Dave
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