staying hopeful

    • Anonymous
      May 1, 2007 at 2:34 pm

      my husband came down with GBS 7 weeks ago today. He has been vented the whole time. He also had 1/2 of his lower bowel removed. we are not seeing many encouraging signs. I wondered if anyone had any advice for me. Thanks

    • Anonymous
      May 1, 2007 at 3:16 pm

      Hi, I know it looks like nothing is happening but 7 weeks is very early in his recovery. It happens in little things, not big leaps.
      I didn’t think my son Nate would get better but looking back 16 mos, I am amazed at just how far he has come.
      Don’t lose hope, rather take comfort in knowing that at least he made it and he will get better. It just might take a long time.
      Talking to the people here has helped me immensely to cope and learn. Keep asking questions. We’re a family with a lot in common here.
      Trudy, natesmom

    • Anonymous
      May 1, 2007 at 3:51 pm

      Payner I don’t know your husband’s name but I will hold him in my prayers as well as you. Check the forum, use us for support, there is a wealth of experience here.

    • Anonymous
      May 1, 2007 at 4:23 pm

      Hi Payner,

      Welcome to the forums.

      Don’t give up hope, people have been vented way longer(almost a year) then your husband and came through this. GBS stands for “Get Better Slowly” There is no specific time table for healing with GBS. Some get better faster then others, but it usually takes a long time. When did they remove part of his bowels? Was before or after GBS?

      I will keep him in my prayers and you also.:)

    • Anonymous
      May 1, 2007 at 11:29 pm


      I am sorry to hear about your husband, we are glad that you found us. You and your husband are in my thoughts and prayers.


    • Anonymous
      May 2, 2007 at 7:03 am

      Hi Payner

      Your husband is still in the early stages of his GBS so you and family/friends just be as positive and encouraging towards him as you can as he will be feeling alone and scared and frustrated. Give him lots of love and cuddles and pamper him as much as you can. With GBS peoples onset and recovery is very individual and nobody can say how long it will take but just take it one day at a time and it will happen. Please keep in touch and let us know how he progresses because he will. All the best ๐Ÿ™‚

    • Anonymous
      May 2, 2007 at 7:58 am

      hi patner & welcome,

      besides what brandy asked, ‘When did they remove part of his bowels? Was before or after GBS?’; i would like to add, why was it removed?


    • Anonymous
      May 2, 2007 at 6:41 pm

      Welcome to “the Family” ๐Ÿ™‚ I would add a word of caution for the future. Sometimes the docs are to quick to give other diagnosis without having studied up on the array of crazy things that can happen with GBS/CIDP. With time, most things will resolve on their own. Nerve healing is the slowest thing to happen in the body. ie: people have been diagnosed with carpel tunnel syndrome and sometimes rushed into surgery [I]But[/I] it really was a residual, that given time would have resolved.

      These diseases, for the most part, are not like in the medical textbooks !!! Keep in touch with us and we’ll help all we can. After all, we are all “doin’ it” and can give a reality check to the medical community ๐Ÿ˜€

    • Anonymous
      May 2, 2007 at 6:50 pm


      So sorry to hear about your husband’s GBS. You have come to a great place to learn a lot about this confusing and multi-faceted syndrome. If you haven’t already done so, I suggest that you read as many previous treads on this site as you can stand, including archives. There is so much information already there. I think you will find lots of answers and lots of encouragement here.

      As others have said, although it seems like forever, your husband is very early into this – try to be patient and watch for very gradual improvement.

      Best wishes for your husband’s continued recovery.


    • Anonymous
      May 2, 2007 at 10:16 pm


      Does your husband have a colostomy bag, or have they reattached the intestine to the anus again? I’m quite interested in this as my daughter, who is 15 now, had most of her large intestine, which I believe is the same as the lower bowl removed when she was about 22months old. She was on a col.bag for a few months so that her stomach could return to normal size, and then the intestine was reattached to the anus. She lives a happy and healthy life. The only thing I have noticed is that she cannot eat a great deal at one time and tends to ‘graze’ throughout the day (which is the good way in any case).

      Is you husband able to blink or close his eyes at all, maybe move his hands? I had a trach for 6 weeks with GBS, but towards the end of those six weeks I was able to blink and close my eyes. Are you able to communicate with your husband and if so does he seem to be aware of what is going on around him. Just as so many said before me, many patients have had a trach for a number of months. This is very disheartning, please know that we will all be thinking of you. Keep us updated on his progress as we would love to hear how his improvements go.

    • Anonymous
      May 3, 2007 at 8:31 am

      I am glad I found this forum. Thanks for responding! Randy had a blood clot in his lower bowel and 1/2 the bowel was dead. They took it out and there was just enough to reattach. He seems to be healing well from the surgery.
      Yesterday was an encouraging day. He opened his right eye, ever so slightly, just enough to let us know it was opening and closing. I am hopeful that this is a good sign of things to come. I understand it is going to take a long long time. WE all will learn patience and perseverance. When Randy cme down with GBS it happened in about 24 hours, from tingling in his feet and hands to being on the vent and totally paralyzed. Thanks for your good wishes and I will keep i touch. Prayers and hope to everyone. Thanks!

    • Anonymous
      May 3, 2007 at 10:45 am

      Yes! opening his eye is a great, encouraging sign ๐Ÿ™‚ Healing happens with tiny, tiny steps sometimes but it does happen. No one can tell you “how much”; you’ll know when Randy gets there! Hugs and good wishes to all.