TO STEVEH, & any others faced with a neurogenic bladder-CIDP hitting autonomic system

    • Anonymous
      August 15, 2009 at 4:38 pm

      [QUOTE=steveh]Thank you for sharing your struggles. You will be in our prayers. Our daughters bladder has been affected from the very begining. Do you mind sharing how your bladder was affected in the begining? She has been dealing with this illness for almost 9 yrs. and I have never heard of a skin biopsy. Sounds like we need to look into it.[/QUOTE]

      Hi Steve,
      I absolutely HATE IT when I see a child has become affected with CIDP.
      It is not right, and I wish I could see into a crystal ball to see into the future, as I know in years to come, there will finally be something to rid the world of GBS/CIDP.
      But, you asked about the bladder…
      In the beginning, after I had been diagnosed with CIDP for about a year or so, first, I had no feeling what so ever in the groin area. So, occasionally I would have an “OOPS”, and start to pee in my pants…grabbing and running to the bathroom, (I am a male, so I can grab and stop it temporarily until I got to the bathroom). Then, though I couldn’t feel the symptoms, I started getting UTI’s, (Urinary Tract Infections), which were found out when my doctor did a urinalysis.
      So, I was sent to a Urologist, as my neuro and PCP, (primary care physician), suspected I had a neurogenic bladder, since my CIDP had hit my autonomic system. So, he did three tests–I can’t remember the names of them, but one he pushed water into the bladder and I was supposed to hold it in and let it come out slowly–well, I couldn’t hold it in at all, and the water just came right back out. The end result, was that the Urologist confirmed I had a neurogenic bladder. And he said the UTI’s were coming because I could not empty the bladder completely, and the sitting old urine was causing an infection.
      He then had me do straight-cathetering, about 5 times daily. While this was going on though, my incontinence was increasing. Then he had me increase it to straight cathering about every 3 hours. Still incontinence.
      Then he wanted me to do it every 2 hours, even through the night–I told him to take a hike. It is bad enough dealing with severe fatigue from the CIDP, but now this guy wants me to not get restful sleep–yeah, right…

      I then contacted my PCP, and told him what was going on. He agreed with me, that it was now time to get a foley catheter permanently. And I am also on Detrol 4mg daily, to reduce the bladder spasms. I also changed Urologists, and my new one I like alot–he told me it was very obvious that I had a neurogenic bladder, and that the other Urologist shouldn’t have put me through those 3 weird tests.

      The problem with a foley catheter, is that with a male, it still leaks around the tube occasionally. And I get ulcerations inside the urethra, from the pressure of the tube inside the *****. So, I kind of solved that problem by every day or two, putting a 4×4 gauze wrapped around the end of the *****, and taped in place. If I see a bit of infection with some pus coming out from around the tube, I know an ulceration inside the urethra has become infected, and my PCP gave me an antibiotic ointment to push down into the *****, and the 4×4 keeps it there. I also have to switch sides that the catheter tube comes out of my underwear–left side one day, right side two days later, as that relieves the constant pressure of the tube inside the urethra, by having it press on one side, then alternated to the other side.

      I still get an occasional UTI, but not as often as when I was getting them before I had the foley catheter put in place.
      Since I cannot feel anything in the groin area, plus now I have a catheter, the way I know I have a bad UTI, is that I get intense, VERY PAINFUL, bladder spasms, that come about 2 to 5 every hour. Now it is all set up–I just give a quick call to my PCP, he calls into my pharmacy, an antibiotic, and we put the UTI to rest.

      My PCP told me though, that if the urethra infections get worse, then it would be time to get a suprapubic catheter, of which the catheter would go into the bladder from the abdomen, and not via the *****/urethra.

      My new Urologist also wants me to flush the bladder about once per week. with about 4 cups of lukewarm water, and 1 tablespoon of white vinegar. He said that will help keep UTI’s away.

      I also get chemotherapy, Cytoxin, for the CIDP, every 30 days, of which I am admitted to the hospital’s Oncology Floor for a full day, (9am to 7pm). Each time I am admitted, my doctor ordered that the foley catheter gets changed out. And another thing that my new Urologist ordered, is that the catheter being used, is the new Silicone ones, (white color ones), as he said that bacteria has a problem sticking to the tube.

      I hope this helps, Steve, and anyone else faced with a neurogenic bladder from the CIDP hitting your autonomic system.

    • Anonymous
      September 2, 2009 at 11:39 pm

      Thank you for sharing with us. Fourtunatley for our daughter she can hold her urine she does have problems with “fits of laughter” and not always knowing how badly she needs to use the bathroom and not being able to urinate completely. No one can tell us however if we should be concerned about this since it is not a typical symptom of CIDP. I am doing my homework so that at the next dr visit we will be able to insist on appropriate testin for her.

    • Anonymous
      September 3, 2009 at 10:50 pm

      Neurogenic bladder doesn’t mean you lose control or are incontinent. I can hold my urine but can not feel urges or full sensations. Tests will show the whole story, they are simple and painless. It involves ultrasound, sterile water catheter and electrodes to measure all sorts of nerves and muscles. Its well worth doing the test. I do have occasional problems that go hand in hand with my paralysis events, but they tend to recover back to my new norms along with my resids.

    • September 4, 2009 at 12:24 am


      Thanks very much for giving a clear picture of neurogenic bladder and catheterization. It’s good to know what symptoms are more than just CIDP annoying but instead need medical intervention.

      Has anyone suggested drinking cranberry juice to help control the bacterial infections? I realize most people think this is an old wives’ tale but here is a NIH study with the ” CONCLUSION: CJ (cranberry juice) improves urinary symptoms, leading to less antibiotic use, in paraplegic patients under CIC (Clean Intermittent Catheterization).

      Type in “cranberry juice UTI” in Google and you will get a lot of supporting sites – some real medical science and some less sterling sources. Personally I have been taking my prednisone with cranberry juice for 10 years without an UTI.