Hi Karen,
Yes it might be disgusting but it is a fact of life. I personally had problems with my bladder and bowel at first. I also had trouble telling when I needed to go and would just go everywhere. This cleared up pretty quick for me. Another thing I had trouble with is not knowing when I was having a period. I couldn’t feel anything down there so naturally I had to learn how to use feminin products safely. These may not get great subjects but unfortunately things that need to be discussed. Good luck and tell your mother good luck.

sherry

Karen,

I’m so sorry about your mother. Unfortunately, the bowel problems do seem to be a common thing with GBS, although the bedsores are probably due to negligent nursing. Ben, my fiance with GBS, first started out having uncontrollable bowel movements for two weeks, but once he was released to come home, he didn’t go “number two” for three weeks and ended up back in the hospital because of it. He ended up having to drink some really disgusting liquids to soften the stool. It was a really painful and traumatic experience for him (and for me too having to see him in so much discomfort).

I hope your mother gets better soon! Hopefully, the bowel problems won’t bother her for too long!

Love,

Shannon

Hi Karen: My bladder was paralyzed and I never knew when I had to go either. A good friend of mine, to whom I confessed this dilemma, said just try every three hours. I don’t know if your mother is mobile at all but you might suggest to her that she try every so often. It is an ordeal to go through, or at least it was for me, not being able to feel anything at all and then having trouble urinating even when I had to go. There is not much else I know you can do until her feelings start to return. Best of luck to both of you, Jeff

unfortunately these problems are a fact of life. Someone told me you leave your dignity at the door when you go into hospital and collect it again on the way out! How true!

My bowel was paralysed like every other muscle and i went 3 weeks despite every enema known to man being tried. manual evacuation is not pleasant! I suffered loose bowel motions for a couple of days (in my mind i was laughing at the doctors saying serve you right for all those enemas!) but then things started to settle down. I was bedridden so got into the habit of sitting on the toilet when i was wheeled to the shower of an evening. My body got into the routine of knowing it was time to go to the toilet even though i couldnt actually feel the sensations. Gravity also helps so if she is up and about, even in a chair, you could ask for her to be given time to sit on the toilet and see what happens. Although if she was left to develop a bed sore the nursing staff may not be willing to take the time.

Hi,

I personally would take the fact that she can go at all as rather good. If only because not being able to go creates its own problems.

She developed a bedsore, it became infected and she got another infection because of the antibiotics given to treat the bed sore. That infection caused her to have loose and often bowel movements over which she has no control.

So, that is a major screw-up by her medical professionals. Bed sores? Even when I was in the Red Cross before the age of 16, I knew how bad it reflected on the nursing staff if a patient got a bed sore.

That she poos without realising it is not disgusting. What is disgusting is that she was allowed to develop a bed sore in the first place.

If the hospital staff do not know how to cope with a natural occurrence, they are in the wrong job. That your mother is able to poo is surely a good thing? Keeping waste material inside the body is not a good idea.

I would however want to make sure that she is cleaned up immediately. A sore bum is not good for anyone. And it can get sore fast if left uncleaned. Actually, I would consider it an affront to her dignity.

That you have to bully the staff to take proper care of your mother is a sad reflection on them. After all, the person who doesn’t poo is in bigger trouble than the person who does. Every single one of us does it – we would explode otherwise. For goodness sake, it is a natural part of our digestive system – wherein lies most of our immune system – and GBS is an auto-immune reaction. The fact that your mother doesn’t know she has to have a poo is not weird – her nervous system has been damaged by GBS. The hospital staff cannot cure GBS but they can sure take care of its effects – and why aren’t they?

God bless

Karen, I agree with the others and your Mom is very lucky to have you to ask about this disgusting (not really) situation. It is not pleasant to share personal information for anyone. Remember that the body has been thru alot and to get on a schedule is wise. That might take time and you don’t want her to strain. Let gravity and activity even if it is from sitting in bed and moving around for example stretches and range of motion exercises. Also and I don’t think anyone mentioned this but breathing exercises. Straining can cause the stools to become softer but it is not good for the muscles that are already compromised and weak. They are right about not being able to feel any pressure or urge to go. Remember those muscles have damage to them and are leaking lots of energy and miss guided signals. I had trouble and until I could tell what muscles I was using down in that area I had all kinds of ideas throw at me to help. My Doctor did not like using the enemas. I guess he wanted to let nature take it course and I was eating healthy well balanced meals. After eating a few good meals of solid food I ate something that gave me severe abdominal pains for 24 hours. I asked for one of the most disgusting enemas he had. The first did not work but from then on after a few then my body with the weak muscles could start to move better. Then I ran into problems again and wanted my body to get back to its daily routine. I asked for another enema and that was the last one I needed. Remember the breathing and stretching! If after that she might want to see a specialist. Give her a hug and tell her you told all of us her problem if that does not make her ……oh you get the idea! But laughing is a good abdominal exercise! Strenghtens breathing and lung capicity! Tell her to relax the muscles will get stronger and the nerves will learn to get the signal to the right spot gradually! I am 14 months into this and still listen and pay attention to my body each and every day! Just remind her not to strain. Foods that worked for her before might not help in this situation also.

Sorry to be jumping around I am watching tv and jotting down ideas..and also remembering all the laughs and jokes we made in the hospital about this disgusting matter!

concerndaugher you don’t live that far from me! If you need someone to talk to or want to send me a private message, I would like to help if I can.

You are new to this forum, post have been lost due to glitches. You are not along and your problems are similar to each of ours. It seems like none of us were totally thrilled with our health care….either in a small town or a huge hospital. Doctors do things differently for the most part and it all adds up to the individual person that day! For some reason they choose to do things with me a certain way! I had to follow their lead! I did not have a choice. I started out in one hospital that I was very comfortable in and they did not have the machine for the PlasmaPhresis Exchange….I was then transferred to a bigger hospital that was hard for family members to travel to! They assumed the job of calling me when they knew I would be waiting for my meals to arrive. Others called to say Good Night! Here I am 14 months later and getting better slowly each day! I have good days and bad days. I have learned to listen to my body. Learned to sort out priorities too! Find time to talk to a nurse you see often during your visits. I had a wonderful rare Doctor that called my husband each day at work to talk to him about my progress and what to expect when he visited that night! Also I might add that I seen that Doctor any time of the day….as early as 7 AM and as late as 10:30 PM…..I started to wonder if he ever went home! The team of Doctors that took care of me went thru him and he was quick at getting them messages to come see me for a problem or hear from them if they visited me! I even has messages being passed back and forth between the hospitals from their staff members that had treated me and wanted to check on me! I truely think they all care but some of them don’t show it very well. I was proud of mine that they admitted they did not know everything about GBS and wanted to check with another Doctor from another state before they told me the wrong thing. I admired that! I admired them for getting back to me to answer those questions. I could have called a few of them Jerks but I think they were doing the best they could and could not do something for me that was under the study of another specialist so they did not beat around the bush they told me to check with them and they would check back to me to see what the answer was. Next day they would check back or the nurse would come in to see if that doctor had been in to visit yet she was looking for answers too! They were amazing and worked as a team, careful not to step on either others toes. I could see at times they did not agree with a decision but they let it take its course and then would step in if they felt there was another way to handle it! I learned how to have better communcations with family and friends due to the staff at the hospital. I was actually comforting family and friends! I would give them the night off if I knew someone else was visiting. I was the Princess but I was also in charge! After awhile I was getting better and becomeing demanding! LOL That is when the nurses told me they hoped I would go home soon….my demands were showing them I was ready! DID that make the Doctors release me sooner? Nope I had to do the time! Now my advice is don’t rush to come home it only immediately produces major problems that need taken care of! 24/7 and I don’t always feel like a Princess any more! I am back to being Queen, thus the LADY KIT!

daughter,

although there could be some permanent non-recovery, it would be almost impossible to prove. the bigger effect is that it has increased her recovery time. take care. be well.

gene gbs 8-99
in numbers there is strength

Nursing care is so important… my family is in a lawsuit over my dad getting bed sores (plural) in just one week in the hospital. Then he got e-coli infection from that. They finally inserted what we called an astronaut tube which worked most of the time. Since she is not out of the hospital yet, document (pictures and journals) of everything the nurses and doctors do. That way if there is long-term damage you will have proof for the attorneys to use.

My dad was in the hospital for gout in his spine and never walked again once he got put in. Unfortunately, 79 days later he died. The nurses/doctors kept screwing up right and left even though someone was with my dad all day long every day. If you can, scream and yell and get your mom moved to a floor that has more than 1 nurse per 6 patients. And we put a big sign above his bed to turn every two hours. I hope not to scare you with this, but it is reality in some of our hospitals – even the best known.

[QUOTE=concerndaugher]Pittsburgh is where we are trying to convince my mother to go. are you in a re-hab center? which one?

thank you so much
Karen[/QUOTE]

Karen I knew that is where you were considering! Here each rehab place is different like every other place. Thru my insurance I received rehab while I was in ICU I had requested they come in and just move my legs and arms out slightly to keep them moving. I could feel the one leg was getting cramps and I had family straighten out my hands between their hands. They I moved to a unit where everyone was on trache and they provided the next level of rehab getting each little muscle to move. Results and brags come quickly each day when the GBS started to reverse. I was weaned off the trache and I remained there until I could walk 10 steps and moved onto the rehab floor. On the rehab floor I had rehab in the morning and also in the afternoon. There I was made to do Occupational and Physical Therapy both in the morning and afternoon for 90 minutes each time. I was told to sleep between appointments. I ate and would sleep a few hours between. If I did not rest I did not get good results and a few times I thought I was not going to make it thru that secession. But they listened to me and knew to work on other areas and let the legs or back rest. Some days they let the upper body rest and only worked on the core and the lower body! After that I went home after 9 weeks in the hospital and come home to have a visiting nurse for a few weeks and then I had Occupational and Physical Therapy come to the house several times a week. I worked toward being able to leave the house and go to the rehab facility several times a week. Again there I worked on OT and PT and getting better slowly. I spent the Summer outdoors, at the fitness center and now that Winter is here and I am ready for the next level I am back in PT rehab. I am sending you a private message!
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