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To Pee or Not to Pee: A Continuing Tale of MS and UTI

Posted on: December 17th, 2013 by admin
Category: Managing MS

Restrooms signThe quest to find an answer for my repeated urinary tract infections changes quickly. As I started writing “To Pee, or Not to Pee, Part II,” I was still hopeful that an infectious-disease specialist I was scheduled to see would be able to get these things under control.

He was up at bat within two weeks of first seeing me. My gait had gone to hell, and I tested positive on a home UTI test strip. His casual lack of response when I called him, trying to get a culture for the suspected UTI, infuriated me — left me incredulous. It took him five days to get back to me. Five days. Two phone messages. Two e-mails. In the meantime, I had run back to my neurologist and his staff. They got a culture done, read the results, and got me on Monural, aka Fosfomycin. Three days later, I was back to my normal tipsy walk.

Better just in time to attend the 2013 Judith Jaffe Conversations About MS patient conference. There I met another MS patient who had also suffered recurrent UTIs until she started seeing her current urologist, who was able to stop the cycle. And so I replaced the infectious-disease specialist with a third urologist. This new friend also directed me to the discreet Coloplast catheters that I think are part of the solution.

The new urologist’s plan is for me to drop off a urine sample at his office any time I feel I have a UTI brewing. I don’t need to call in advance; I can just stop by the office anytime, Monday through Friday between the hours of 9:00 and 5:00. If the urine culture is positive, they will get me on the appropriate antibiotic the next day. For the weekends, he gave me a prescription for Levaquin, saying, “three days is too long to wait when you have a UTI. Start taking them if you feel one coming on late Friday or Saturday. I think you can hold off until Monday if you realize one is coming on Sunday.” But what if I’m wrong? I’ve gotten two negative cultures when I was sure I had one coming. “We’ll sort it out when you give the sample for culture on Monday.” This guy did not pussyfoot around with UTIs.

Then he started laying out the plan to keep me UTI clear. He tested and scanned all the organs and sphincters involved. Based on those tests, he wanted me to self-catheter four times rather than two times per day. He gave me a super-strength cranberry extract to try, Ellura, saying there were no studies to support its use, but he’s been seeing good results with his patients. Ellura would not be covered by insurance, and is pricey enough at $1.33 a capsule. I take two a day.

He was opposed to injecting the bladder with Botox, pointing out that Botox is a poison and needed to be done every six months. He wanted to try some other things first. He gave me something to decrease the urge to urinate. It kind of dries me out, but I am just drinking more water whenever I am assured that I will be near a bathroom. And he said he wanted me to move my bowels daily, saying that he wanted that out of my body. I have not taken the fiber he recommended, but I am regular six days out of seven. If I get yet another UTI, I will add the fiber.

It’s mid-December, and I haven’t had a UTI since November 25th. I’m thrilled to think I may have found a solution to these infections that have been setting my progress back or putting it in a holding pattern for the last 18 months. Self-cathing is a big deal the first couple of weeks, but with the disposable, lubricated catheters from Coloplast, it is as easy as it can be. I hope to write “To Pee or Not to Pee: Part III” in a couple of months.

– This post was written by an anonymous brave soul

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2 Responses

  1. Wendy says:

    I had 3 UTIs last year. This year, I started taking a cranberry pill (you can get them at Target, Costco, and probably any pharmacy…without a prescription) and I haven’t had any problems (UTI or side effects) all year!

  2. Regina says:

    Wendy, I’m glad this worked for you, even more glad that you got good results from cranberry supplement. They seem to work wonders for some people, but not for me. Do you also take Ampyra? Best regards.

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