Embarrassing ?

    • Anonymous
      December 20, 2006 at 2:37 pm

      I have learned how to cope with all but one GBS related problem. I have lost the use of the muscles that control bowel movement. Dispite taking various laxatives and increaed dosages it has not been of any help. I want to try an enema but I am unable to get up and to the tolet fast enough to avoid and accident. No matter how hard I strain it has little to no affect.
      My wife has been an absolute saint helping me with everything but I refuse to put her through cleaning up the mess.
      If anyone has had this problem would you let me know what solution you came up with. People refer to bowel problems on this and other web sites but no one address the actual problem or the solution.
      This is not really a constipation issue its a muscle control issue however it leads to constipation.:mad:
      gene GBS-09/16/2006

    • Anonymous
      December 20, 2006 at 6:49 pm


      Fortunately, Ben no longer has a residual problem in that particular area, but when he did, he wore Depends. I know, they’re no fun, but they worked.

      As for your wife cleaning up the mess, unless she’s actually said something to you about it, it’s probably no big deal to her. I had to clean up after Ben a few times, as well as perform enemas on him, and I felt worse for him than I did for myself.

      Good luck with your situation and happy holidays!


    • Anonymous
      December 20, 2006 at 7:04 pm


      Thank goodness my problem was solved by the time I left the hospital. In ICU it was bad as they didnt realize there was a ‘problem’ until a couple of weeks of being in ICU. I had to be hand ‘evacuated’, which was extremely painful, as well as having what I call a hose pipe enema.
      All I can suggest is that you possibly by a huge plastic sheet (thats what they had under me on my bed in ICU when they did the deed), put it in the shower with possibly a bed pan next to you. Your wife would have to help you obviously. The enema can be done in the shower, and if you cant get on the bed pan,’potty’ or toilet on time, at least you have the plastic under you with little clean up. Once everything has been disposed of, you can have a shower and feel clean. Thats all that I can think of that may make things a little easier.

    • Anonymous
      December 20, 2006 at 10:31 pm

      I know where you are coming from – it got to the stage where my bowels were the main topic of conversation in hospital. They were counting down the days – i think i got to about day 24 before they decided to do a manual evacuation. I think that was the worse thing i went through the whole time i was in hospital. I felt like screaming at them in the early days (before i could talk) every other muscle was paralysed, why should my bowel be any different. I had every enema under the sun and one seem to work. Eventually the muscle must have started to recover as i was able to go to the toilet one day when they wheeled me to the shower. I think my problem was being bedridden, i didnt have gravity to help. Once i was sitting up it became a bit easier.

      I dont have any practical suggestions, just wanted to let you know it is something some of us seem to go through and hopefully it will rectify itself in time.

    • Anonymous
      December 21, 2006 at 12:21 am


      I have just sent you a private message, just letting you know as some poeple dont know that they have these messages. Right hand side, click on Private Messages.

    • Anonymous
      December 28, 2006 at 1:41 am

      During my early stages of recovery in rehab I went thru something they called “Bowel Retraining”. Everyday at a certain time they would give me a suppository that was quick acting (along with certain other medications I took on a regular basis). After a certain amount of time my bowels started acting on their own at that particular time of the day. Eventually I started going on a ‘need to go basis’ and not a ‘timed basis’.

      My advise would be, if you are going to try something then do the same thing at the same time EVERYDAY. Talk to your doctor about medications you can take to help with this also. Also drink LOTS and LOTS of water daily.

      You are still in the early stages of recovery and as you know by now, everything takes time, and lots of it to get back to ‘normal’.


    • Anonymous
      December 28, 2006 at 2:16 pm

      Nate had it really bad when he was first diagnosed.
      He didn’t go for about 10 days. They finally put him on some stool softener and it helped get rid of that problem.
      He was on them for months before it got better.
      I have the same problem due to meds I take. I use a generic matching FiberCon. It works very well for me.
      It might be good to talk to your doctor about a bulk producing type of softener. They help you feel like you need to go and soften what you have to get rid of.

    • Anonymous
      December 31, 2006 at 9:56 pm

      [FONT=”Book Antiqua”]I posted this on here before but somehow it disappeared. My wife had bowel problems after she came down with GBS in 2000. They just wouldn’t go away, then in late 2004 she got hit with a massive colitis infection. The Drs tried to get it under control with antibiotics, but they failed to work. So after a colonoscopy the Dr found there was so much damage done by the infection. There was no other alternative then to do surgery, he had to remove 95% of her colin. She has an illiostomy pouch on her lower right abdomen, as to which I have taken care of changing these since. We have had a lot of occasions these will come off, I just take care of cleaning up the mess & go on. I guess after a certain amount of time, it just got where it didn’t bother me.[/FONT]

    • Anonymous
      October 22, 2008 at 4:52 pm

      Yes eugene i have this prob. lot i think its mucles and meds combined. but i started eating easy digestable food and drink glass of prune juice every other day. until it starts going right again. best not to eat cheese or lot of bread and drink prune juice and v8 juice. and eat soft foods cause if not your going to get real sick. ive been sick from and had massive head aches from. so if this dont work at first go to doc let him/her give enema to clean you out.:eek: then start on prune juice every other day but must eat soft foods im like racoon i put v8 juice on sandwiches soggy and i just stay away from bread and cheese or milk. these bad good luck i no your pain i,ll pray for you jim in indiana 😀

    • Anonymous
      October 22, 2008 at 6:48 pm

      Sorry we have to go thru any of this stupid residuals. I had a problem where I leaked stool and did not even know it. Also leaked an smelly oil and had gas. Well I did! I know what you are going thru with the lenght of time it takes to get to the bathroom too! I had a bladder control problem too! Then if I had a digestive problem and not much of a warning, I had a potty chair next to my bed for any time I wanted to use it! You can get them at most pharmacies and thru my rehab Doctor I got mine along with other aids for the handicapped. Shower stool that got me over the edge of the tub and a walker. I also got a cane. Later I bought myself a wheel chair incase we walked a little bit too far or I stood a little too long. My husband could go get that and I knew he could get me back to the car if needed. I never needed the wheel chair but all these things made life so much easier and took some stress from the worry. Hope it can do the same for you!

      Be sure to talk to your Doctor they can show you exercises and movement you can do in bed or sitting to get those muscles moving again! They helped me with all that before I got out of rehab and I continued to do those exercises because they do help those muscles. Life is much easier now! 😎

    • Anonymous
      October 22, 2008 at 10:02 pm

      i am just going to wonder outloud for a minute.

      this is what im thinking but i could be totally off…

      if i understand correctly, your problem is with your bowel not creating the peristalsis (the movement that pushes the digested food along the digestive tract). inserting almost anything into the rectum should irritate it enough to cause peristalsis.

      so, im wondering if you are able to insert a suppository yourself, while sitting on the toilet, if that would irritate your system enough to get it going. they are usually a little slow to act, like 15 to 20 minutes. even if you dont insert it while on the toilet, maybe that will give you enough time to get there when the time comes.

      not sure how mobile you are, but maybe you could insert it in bed, lying on your left side, and remain in that position to increase the effectiveness of the suppository. placing a commode next to the bed would be a good idea, of course.

      i really like the shower idea, too. a commode in the shower, if that is possible, is an awesome idea. then you can feel nice and clean when you are done. good thinkin’!

      i really think you should talk to your doc, though. doing anything like that repeatatively may have ways to affect your health negatively. your intestines have an incredibly important job, like absorbing nutrients. messing with their function can possibly interfere with this process.