Very personal and private problems

    • Anonymous
      October 15, 2009 at 3:49 pm

      I was diagnosed with GBS in June 2006. It only affected my lower extremities. I still have problems with my feet and lately my arms and hands have started to show signs of CIDP as well as my feet. But every since the GBS I have had problems with my bowels and bladder. I have difficulty getting the right muscles to work. When I first got GBS I was out of it for weeks. I do not remember anything. I only know what happened because people told me. I don’t even remember the care that I was given. I was not diagnosed with GBS until I got out of the hospital 3 months later. I still have alot of muscle and nerve problems especially with my bladder and bowels. Does anyone else have a problem with their bladder or bowels? I have seen a Urologist and two other specialist but they can’t seem to help other than to say do some exercise. Any suggestions?

    • Anonymous
      October 15, 2009 at 9:53 pm

      Welcome Cuda,
      I got GBS Oct 2007. I had trouble with bladder and bowels. While in the hospital they put me on a bowel program daily called rectal stem. The nurse would insert a suppsitory in the rectum, give it time to dissolve then with rubber gloves on the nurse would insert a finger into the rectum and massage the inside of the rectum muscle, this was to get the muscle used to working again, the same way physical therapy gets your body used to working again. After comming home, I take colace a stool softener.
      I was put on medication for the bladder that helped the urine come out but I had no control when it did flow.
      I had to wear protection for months for the bladder and bowels.
      I am on detrol now for the bladder and colace for the bowels.
      I have control of both but after two years it is such a strain to get those muscles to move the bladder or bowels. I’m thankful for the improvement I have made and hope to make more in the future.
      Hope you make improvement.

    • Anonymous
      October 16, 2009 at 12:31 pm

      Thank you, I am sorry to hear you have a similar problem. I have tried stool softners and I do not want to become dependent on them. Is this a problem that is just not discussed by doctors or GBS patients? From what most people who have had GBS for a while have said that it takes years to get back to normal. My residuals seem to be getting worse not better. People talk about rocks on their feet I feel rocks in my pelvis area and the bowels. I have a lot of discomfort throughout the day. I am trying not to get addicted to pain pills. I take neurotin and bacolfen. I take a muscle relaxant because my muscles are so tight my legs feel like I am carrying around tree trunks. There are times when my feet and ankles actually lock up and I can’t move them. There have been times when my big toe just points straight up in the air and won’t budge. I didn’t have these issues before. This has only been going on for the past year.

    • Anonymous
      October 16, 2009 at 3:30 pm

      Your muscles can not work if the nerves to those muscles are affected because of the GBS, therefore the bladder and bowels will not function the way they should.

      You need to do what you can to keep the bowel moving. Old urine left in the bladder can flow back into the kidneys and cause problems.

      This is a problem not discussed enough by doctor and patient. I know now that I should have gone into more detail about it.

      As I started getting feeling better, the residuals started the same for myself as you described yours. I would tell the doctors about the legs and feet but never mentioned how the pelvis and rectum areas felt.

      Hope you talk to your doctors more than I did.

      Good luck to you

    • Anonymous
      October 16, 2009 at 11:50 pm

      Thank you, for a couple of months I was involved in a pelvic floor study. The hospital discountined the study. The doctor no longer has a practice at the hospital. I am waiting to see if my primary care doctor can find another program.

    • Anonymous
      January 31, 2010 at 4:03 am

      Hello Cuda…
      I have had CIDP for almost 5 years now, and have had extreme incontenince problems….blush….it is hard to deal with.
      I was going to suggest an alternative to regular otc stool softeners. What has worked very well for me, and is a natural alternative, is any product with flax seeds. Personally, when i need to, I just take a Flax Seed Oil gel pill (admittely it is a rather large one as pills go) but is very gentle, and works within a day.

    • Anonymous
      February 4, 2010 at 8:09 pm

      I too had real issues with bowel and bladder when i was sdiagnosed with GBS. We used a natural mixture of bran and prune juice( i will get the recipe from my mom and post it tomorrow) I took a regiment of tlhis stuff instead of medication and it worked for my bowels. I too am having more issues with my bladder right now. I have been through continence therapy. Wore depends for almost a 1 and a half. got better now going down hill. I also have a list of things to avoid- foods and beverages-that i follow. CIDP and kidney stones are not helping to say the least. I need to drink a lot of water for the kidney stone but then i am having trouble making it to the bathroom in time. By the time i get the signal i have to go it is almost too late. I see my urologist tomorrow to discuss the kidney stone I can not have IVIG until it is gone.

    • Anonymous
      March 22, 2010 at 6:17 pm

      I should probably be introducing myself, but this thread made me want to reply out of that normal order. I am new to the entire GBS world, in this case as a caregiver. I’ve been reading as much as I can, when I’m not tending to unending tasks, and this one stopped me.

      I had issues with my feet about seven years ago (plantar fasciitis and Morten’s neuromas in both feet) and was prescribed Neurontin for nerve pain. Within days, I had wet the bed. I was astounded. This became an issue for me and I never dreamed it could have any relation whatsoever to the meds I was taking for my foot problems, until I read all the fine print in the package insert on Neurontin.

      It’s been years now, so I can’t remember the wording, but if you’ll read the entire drug info sheet on that medication, you’ll find incontinence issues listed as a side effect. I quit taking it and, for me, that problem stopped!

      My edit: I’m not at all suggesting this is the cause of all incontinence problems for those who are taking Neurontin, but it might be for some.

    • Anonymous
      March 23, 2010 at 4:39 pm

      Thanks for the heads up. I have been holding off on taking the Neurontin because I am very sensitive to meds. I have been relying on over the counter meds and toughing out my pain. If I do take it, I’ll keep my eye out for that side effect!

    • Anonymous
      April 21, 2010 at 3:46 pm

      Hello my fellow GBC/CIDP family! I am new to this forum. Bowel/bladder problems-incontinance will happen to all of us sooner or later. I had a leaky bladder for many years, now almost incontinent of bladder. My heart & prayers go out to you!

    • Anonymous
      October 18, 2010 at 2:00 pm

      My mother was diagnosed with GBS in early September, she was treated with IVIG and released to a rehab facility shortly after the treatment. One of her issues is severe abdominal pain and constipation. She has been able to have occasional bowel movements with the assistance of stool softeners, etc., but she is very concerned about becoming too dependant on them. The vicious cycle seems to be severe constipation, inability to eat because of it, pain , pain meds that prevent her from participating in rehab activities, loss of weight and strength – then temporary relief from the problem. I know this is a difficult subject to discuss for many people, but it is frightening to her and she doesn’t seem to have consistent input from nursing staff and doctors.

      I am hoping to find more forum discussion about this, thank you for bringing it up here.

    • October 19, 2010 at 10:15 am

      Pain killers cause constipation, so stool softeners may be part of the plan for while. Jarred apricots , prune juice, prunes etc. if you are oncerned about the stool soft. dependency. Stool softeners aren’t really addictive as compared to laxatives. My father gets stool softeners for adavan and other depression medications he takes for lewy body dementia in the nursing home. Without the stool softeners he is constipated. I asked for them to be given daily.

    • Anonymous
      October 20, 2010 at 10:08 pm

      ONE you don’t ‘want’ to take in too much liquids because that means you have to get up and hobble to well,…. you know where… with embarassing possibilities on the way to ‘where’.
      TWO you likely aren’t eating enuf goodies that could help you unstop ‘things’. ergo? you are taking meds to cut the pain, [which stop one up ever so loverly,,] and where are you? I’ ve found that Fiber One cereal…the ‘original kind’? That looks like pellets? IF you use that, and soak it in milk or something else to soften it, it’s quite palatable and it takes only about 1/4 cup to sort things out without damage. IF you’re not used to it to start with try less than a 1/4 cup and work up. Lots of bulk in it.
      Last year I’d had a surgery which lasted a long time, and it didn’t help continence issues at all! I’d talked w/my neuro about this? And learned that it mite have been caused by how I was positioned on the surgery table and that can cause temporary damages to nerves from being in one position too long.. It took over six months to ‘resolve’, but the key problems are no longer a ‘pressing’ problem. Besides, no one likes the idea of having to wear adult depends for months on end! It can end, if you stop worrying, plan ahead and let things heal. They can and do! If they don’t? Time for more extensive consults. Of the kind no one wants to experience, but at times, one must.
      Good luck on all fronts! They are NOT FUN to go thru! Keep us up to date as to how things go.. I’m hoping for you!!!!!!!

    • October 13, 2015 at 8:53 am

      Hi I have cidp I am wondering can wet yourself and poo your self with cidp I have other sympomtoms like weekends In arm and legs get very tried and axis some times as we’ll as numbness and timgerling in finger and hand and feet can go stiff at times I am on flabagammer 80g Ivig every weeks and take omperzole for indigestion get that make you wet your self as we’ll even u don’t have any problem with messing my self or wetting my self yet.

    • October 14, 2016 at 5:00 pm

      After many many urinary infections I finally started Cathing myself and that stopped the infections. During that time I had several Kidney stones, one which had to be removed by surgery. Not a big deal as the GI Doctor inserted a device which broke up the stone in place , removed some and the rest passed. We had great pictures of the stone , its surroundings and the resultant pieces of the stone. I’m glad thats over’ on to the next problem. Good luck to all of you with this problem. My Bowels have slowed a little bit but when I need to get out of the way.

    • October 18, 2016 at 11:59 am


      While I was paralyzed with GBS I had no control over either bowels or bladder. 10 tears since I have no bowel issues but have had bladder stones removed twice. One was 3′ long. Problem is that I can’t fully empty bladder. Prostate is normal but it’s hard to go.