Possible IVIG Treatment & Incontinence
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October 14, 2019 at 10:24 am
My name is Michael. I am a 41 year old male that was diagnosed with neurogenic bladder by my urologist after his whole battery of tests. I have been having to wear diapers 24/7 for a little over a year now because of the condition. Went to my neurologist who ran all his tests and confirmed that I have CIDP. He stated this could be causing some of my incontinence issues. My next step is IVIG treatment and we will go from there. I guess it’s not so bad wearing diapers, but am willing to try anything that could eventually get me back out of them.
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October 15, 2019 at 12:31 pm
Urinary problems are very common with CIDP, unfortunately. So is a very “labile” blood pressure. I have both and have been told they will never go away.
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October 15, 2019 at 12:43 pm
So I guess I am stuck in diapers the rest of my life. I guess there are worse things.
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October 15, 2019 at 5:18 pm
I had lost bladder control when I was first hospitalized and they ordered a catheter for me. I had that for approx. 6 months, along with the occasional infections that seem to come with catheters. Then as my bladder control returned, I used a diaper for another 6 months. Finally, the bladder control issue slowly improved and went away. I no longer have any bladder issues.
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October 21, 2019 at 12:33 pm
Does or can CIDP cause bowel incontinence as well? In addition to urinary, I am also starting to have small bowel accidents as well. Luckily they are still small enough to be contained within my incontinence diaper underwear.
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October 21, 2019 at 5:11 pm
CIDP can affect autonomous systems as well and that’s why some have to be in a ventilator until their able to breath on their own again. I suffered from constipation due to CIDP for close to a year. I also had to undergo multiple breathing treatments and was put on oxygen before my breathing returned to normal, plus I still suffer from AFib thanks to CIDP.
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November 4, 2019 at 6:49 pm
I know CIDP has affected both my urination and bowel movements. While I don’t have incontinence,urination wise, when I have to go, I really have to go right now. Very annoying, but it seems to be glacially improving. Also, I urinate a lot, though maybe the Prednisone has something to do with it?
As to bowel movements. Since I got CIDP, it seems like my colon lacks the ability (weak bowel muscles?) to effectively move the stool out. So my morning goes like this. Sit on the toilet, have a small bowel movement. Still feels like I need to go, but nothing. So I get up, brush my teeth, shave, move around a little and sure enough, I need to go again. And if I’m really lucky, I get to repeat the process again.
On really bad days, that might happen 5 times. At the point, I take something to now stop the bowel movements and I’m back to square one….
My guess is that the CIDP somehow hoses impulse nerves in the colon and it just doesn’t work like it should.
I hold out hope that as I improve with the CIDP, things get better downstairs as well.
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