Really embarrassing question but hey we are all family right?

    • Anonymous
      October 20, 2006 at 2:19 pm

      I have CIDP and for quite some time now I have had problems with bowel incontinence. I just presumed it was the medicine. But as I was looking on the internet trying to find some type of underwear or liners that don’t look like diapers, I ran across an article that suggested it can be caused by several things (bowel incontinence that is). The one that popped out at me was nerves not working properly in that area. So I wondered, could this be related to the CIDP not because of the meds I take but because of the disease nerve problems themselves. Has anyone else ever heard of or had this problem? :confused:

      I am only 44 and I don’t want to have to wear a diaper so any help with something the would protect me but look/feel like regular undies would be greatly appreciated as well.

    • Anonymous
      October 20, 2006 at 2:43 pm

      I agree with you, the family feeling is great for those of us lucky? enough to be in the CIDP category. I have a difficult time typing with numb fingers, so excuse my errors please.
      My problem is not with my bowels, but with bladder control. I was told it is because of the nerves therefore the muscles being weak. If you have a physical therapist, they might recommend exercises to strengthen those interior muscles. Also I have seen some medical supply magazines with normal looking diaper type underware. Maybe look in Google. Hope this helps some and hope it is just temporary. Regina

    • Anonymous
      October 20, 2006 at 4:53 pm


      When I had GBS, I had the opposite problem. The muscles were far too weak to allow anything to be pushed ie. bladder and bowl, led to pipes in all the worst places 😮 . Now that was GBS, so CIDP could be a little different, however, (and this sounds awful) I guess it would depend on whether the stool is formed or not. I think, only think mind you, that if it is formed well, and the muscles are not strong enough, then it will not be able to pass. Reason for my thinking is my gbs experience AND, my daughter had Hirchsprung disease, (the nerve cells in her intestine are abnormal or non-existant, and it will not allow the stool to pass). So as im thinking and typing at the same time, Im wondering if the stool is ‘normal’, would you have constipation instead of incontinence? Well, just some ramblings …..

    • Anonymous
      October 20, 2006 at 5:07 pm

      It is [B]not[/B] formed well but it still could be the muscles being too weak to hold it in I guess, maybe also because the nerves cannot contrl the muscles?

    • Anonymous
      October 20, 2006 at 8:13 pm

      Hello and I am not embarassed to talk about bowel movements.
      If this helps,
      I too have a problem with constipation, and it started about one month before any noticed symthoms.I could not understand it, as I was a regular kind of guy.
      I now only get to go about every 3 oe four days, and if I do not take a natural laxitive i have great difficulty.
      Yes, I believe gbs has a great deal to do with it, as my bowls are formed normal but I have great problem with end result, and pain from the hardness of it.:eek:

      If you have difficulty with diarreha or constipaton ask your doc, for a remedy either way. I make sure I use a natural laxative, such as senekot which I buy over the counter. 2 pills usually does the trick and if not two doses SURELY DOES THE TRICK.
      Hope this helps and yes, excuse me for my tying mistakes..

      May your maker grant you some peace
      God Bless,
      Jersey Jim:cool:

    • Anonymous
      October 20, 2006 at 10:34 pm

      I believe that your bowel problem could be the fact that in CIDP the autonomic nervious system (includes digestive tract) can be affected. I, like some others who commented, have more difficulty passing the stool. I live in a retirement home infirmary and a number of the folks here wear pull-ups with/without extra pads as needed for acciidents.

      I hope your diarrhea is a passing complication.

      Another Pat

    • Anonymous
      October 21, 2006 at 2:49 am

      This unfortunate busines is indeed due to autonomic neuropathy. We have mototor nerves taking messages to the muscles, sensory nerves bringing information back to the brain and autonomic nerves divided into sympathetic and parasympathetic nerves acting in a stable balance.
      These control bowels, bladder, heart rate, arterial tension hence BP, ability to get an erection, cardiac rate and to a certain extent ,respiratory rate. The hormones of the adrenal glands also play a part in all this but are not under neural control. DocDavid

    • Anonymous
      October 21, 2006 at 8:50 am

      I developed an “over-active bladder” and just try to “rush” into the bathroom before the “gush” comes when you use a wheelchair, thumbs become “thumbs” when you hook them into your waistband trying to beat the gush.

      I kept a record/diary of when the bladder problem started and how I was feeling, so I now know that my problem IS caused by STRESS STRESS STRESS, if I can bring that stress down and take a bladder medication (I take sanctura), I am close to normal.

      I shopped for “undies” just in case. The nylon/satin ones look and feel and rustle like rubber pants, the cotton/polyester have a much more normal look. I had to experiment with size to find out what would fit, my regular size would not.

    • Anonymous
      October 21, 2006 at 2:15 pm

      Pat/Buckeye was there and DavidBod has given the fully “authorised” version. I’ve had a mother of a 15+ year old CIDP victim on the phone about a very similar problem. She has been getting contradictory answers from medics sadly. He has had CIDP for 3+ years.
      I suggested the great likelihood of autonomic system problem. It is the most probable answer.:)

    • Anonymous
      November 5, 2006 at 2:00 am

      All well said, just chiming in with another “variant”…

      It has improved since we raised my IVIg dose, but in the spring I began to realize I no longer KNEW when I had to pee– no leaking, no accidents, but I began to go (whether I thought/felt I needed to or not) every couple hours, like on an automatic schedule, out of fear of what the NEXT stage was going to be. Even waking up first thing in the morning, that sensation just wasn’t there (despite clear proof when I got into the bathroom that I should have been feeling pretty darn uncomfortable!) When I asked my neurologist, he felt that it was definitely autonomic neuropathy, and (in my case) probably unlikely that I was headed into diapers. I do have other signs of autonomic involvement (temperature dysregulation, metabolism issues… maybe some of my previous balance problems) and this one just sealed it, in his mind.

      Never a dull moment with CIDP, huh? 😉

    • Anonymous
      November 5, 2006 at 6:02 pm

      I dont feel the urge either until it starts to come out and then it is too late. I actually just started wearing large absorbent pads. I carry extras with me as well as some cleaning whips and underwear. I will tell my neuro what your thought about autonomic neurpothay and see what he says.

    • Anonymous
      October 7, 2007 at 1:03 pm

      I haven’t had trouble controlling my bowels, but I always leak pee:p I feel like a like a trickling coffee pot:D Also am hit with the sudden urge to go, and if you don’t get me somewhere quick you better get your rain boots!

    • Anonymous
      October 8, 2007 at 2:28 am

      I have been struggling with first bowel paralysis, I was told I have a spastic colon then I had bladder incontinence in fall of 2005 now in 2007 I have been battling bouts of bowel incontinence accompanied with bleeding horrible fluctuations in my blood preassure, inability to walk after I have an episode and now the episodes are cycling to once a week to once in 10 days. I have been told i have lymes induced polyneuropathies and autonomic dysfunction. I was diagnosed with a neurogenic bladder, a distended bladder and bladder retention on march 27th of this year.

      I got some excellent information from neuropathy dot org they have some fantastic reference articles specifically to manage the bowel and bladder dysgfunction with autonomic neuropathy.

      I know there are different types of IVIg and the one that has Ige antibodies helps with digestive function, I am told biofeedback and retraining of the muscles is the best treatment if done in time however it is possible that it may not be entirely successful but the best we can do is try.

      I have still to be administered a single dose of IVIG and fingers crossed it may be that my treatment will begin week after next.

      My heart goes out to all of us in this family who have these pelvic and rectal sensory and issues with daily bodily functions. I am often lucky to reach the toilette in time as to not make an accident and am also considering adult diapers. I am 38 and my digestive urinary and sexual problems have gotten this bad over a period of 3 years.

      I am unable to sleep tonight because of the spasms and discomfort in my entire pelvic abdominal and rectal areas and the loss of blood with my episodes makes my energy completely depleted.

      For everyone on this forum please visit Dr. trevor marshalls knowledge base called marshallprotocol dot com he has amazing utube presentations of autoimmune diseases of all types and treatments. He is the director of autoimmune disease foundation and research center in california. I got a lot of knowledge from that forum as well.

      please dont be emabrassed, this is part of our disease they are episodes that happen to us. I do hope you find the strength to overcome whatever the day presents as someone said there is never a dull day each day brings us more episodes that we learn to live and deal with. My est wishes to everyone and especially yourself.

    • Anonymous
      October 21, 2007 at 7:29 am

      Mayo Clinic has published a book (available from their library) on incontinence. It should give you the guidelines you need.

    • Anonymous
      October 21, 2007 at 1:05 pm

      I too suffer incontinance. Both ways and described as several of you have already mentioned. When in rehab they set me up with supplies that are discretely delivered to my home every other month and I don’t have to pay for them. They arranged for medicare and medicaid to handle that end of it.

      I have no suggestions for you as I am still trying to figure it all out for myself. Depending on my diet at the time, I do need to take softerners, 3 daily, but even then, it doesn’t really work. Nothing does so far.

      Prayers for all who are having these troubles.


    • Anonymous
      October 22, 2007 at 4:30 am

      I used to have constipation but the accidental discovery of the laxative effect of apple juice has taken care of that. One glass a day keeps me regular but not running. :p

    • Anonymous
      October 26, 2007 at 7:43 pm

      I have had trouble with my bowels and bladder. I feel not only is it due to CIDP and the nerve damage that goes along with it but the decreased ability fight things. I have had chronic brohncitous for nearly a year now. When i get coughing alot or laughing and have used my abdominal muscles, they get worn out and so time to go to bathroom and they arent’ strong enough to hold it in.

      Since i also have Celiac Sprue and it is Intestinal autoimmune disorder, it can causes issues all it’s own. But i’ve noticed that some meds, especially steroids and antibiotics increase the incontinence issues. good luck all and God Bless. Karen

    • Anonymous
      October 27, 2007 at 10:28 am

      For anyone who is suffering constipation, there is a terrific pill that is all natural that will definitely help keep you regular. It is an aloe pill. It is distributed by a company called Next to Nature. You can look it up on the web and order directly from there. Take two a day and you will be regular.

    • Anonymous
      December 1, 2008 at 10:43 am

      I ended up in the hospital in january 2008 after 8 days of vomiting and no bladder or bowel control. I feel certain that it was my CIDP progressing into my intestinal tract. i spent 21 days in the hospital and nearly died before the dr’s got things reversed. I never got an explanation from the dr’s as to what the problem was but I do remember feeling like I had to go pee reallllllly bad but couldn’t get a drop out. Once I begged for a cathiter for 2 days they finally listed and had to clamp it off very quickly as they were afraid I’d go into bladder spasms due to so much emptying so quickly. I didn’t recover feeling in my pelvic region for nearly 3 months.

      I’m still having trouble with my bowels as ended up back in the hospital in October with rectal bleeding. They found a bad colon infection and once I got antibiotics and rid of the infection, I’m feeling much better. Family has even said I seem to be feeling better than I have in over a year. Some days I could agree but there are still others when i just want to crawl back in bed and forget the world exists. I’ve finally gotten into a GOOD GI clinic and they are actually wanting to getto the bottom of things (no punn intended, LOL).

      Hope things get better for ya.

    • Anonymous
      December 1, 2008 at 11:30 am

      i had similar problems and resolved it perfectly by taking over the counter digestive enzymes– the ones i choose also have friendly bacteria to assist with intestinal flora. i take them through the day and i cannot say enough good things about them.