Anyone else w/residual GI side effects from GBS or IVIG treatments?

Hi mazo997,

I relate very much. I was in the hospital 3 years ago with diarrhea and major antibiotics helped. But I’ve had problems really most of my life – probably IBS. I have found a miracle for me… Metamucil every morning and I am very regular. Yeah! I know how you feel. Now every once in a while something gets me – I found pepper is bad.

Good luck and really, try Metamucil 😮

P.S. What meds are you on? I was on amitryptiline and gained about 30 pounds the past few years. I just got off of it and am now on Cymbalta. My appetite is going down some, but no weight change… YET. I am optimistic that this will change.

i have a similar problem. have you been checked for celiac sprue? gbs affected all of my gastro system, and i still don’t have it back yet, maybe someday maybe never. keep a diary of intakes-food, liquids, candies…. if you have a good day look back over your diary and eat the same things to see if that helped or was a good thing. keep trying this until you find your good list. keep track of the good things and hopefully soon you will have a bigger good list then your bad list. don’t give up. keep a positive attitude and you will help yourself to a better life. make sure you look outside the box when it comes to trying different foods and drink filtered water all the time.
if immodium helps use it and start from there. try not using a diet but going with what you like and add to it. the weight could also be water weight, i have to use lasix every other day to keep the swelling and weight under controll. i just started lasix one month ago, and have noticed when i need it my weight goes up 6 pounds and after i take 1 pill it goes down. i don’t over eat or under eat, i just gain weight just thinking of food and having my kids eat it.
keep a positive attitude and take care.

Hi – This is my first post. My mom was diagnosed with GBS in mid-April. She is 62 and thankfully doing much better now (but still has a long long way to go). She never had to go on a vent, but has certainly had lots of tingling, leg cramps, sleepless nights, and still needs a walker to get around. We normally eat pretty well – mostly organic, unprocessed foods (See the book Ultrametabolism for more info) and her GI track is getting much better. Also, last week, her doctor switched her off of Amitryptoline (spelling?) which was making her depressed and also didn’t help her with sleep or pain. She is now on 75mg of Lyrica twice a day and its been amazing. She now sleeps 11 hours a day (better than 1-2 hours!), has virtually no pain, less tingling and is much happier. Every time she wakes up she feels more and more like her old self. Has anyone else had experience with this?

Regards,
Elisheva

[QUOTE=mazo997]At the advice of another member, I’m posting this in Adult GBS rather than General Questions….

I have to admit, I’m a little embarrased to ask about this… Has anyone else experienced any GI complications (i.e., chronic diarrhea) or weight issues since recovering from GBS or IVIG treatments?

I was hospitalized last November for a week with GBS and had a “good” recovery after one week of IVIG treatments. Although I still struggle with fatigue I’ve made some major life changes to accomodate my recovery (no longer working, pulled kids out of daycare – we were constantly getting sick). However, I’ve gone through just about every battery of test to diagnose the problems behind my chronic diarrhea (now going on 7 months) and my inability to lose weight (weird huh?)…

I’ve gone to GI specialists and gone through just about every test you can imagine. We’ve found nothing and the GI doc has pretty much given up on finding something. I control those symptoms with immodium.

I can’t lose weight either. I just keep putting it on. I exercise w/heavy-cardio six times a week/one hour at a time to make sure I don’t put on any more weight (already 15 over where I was). I follow a good diet with low calories. It’s so frustrating! This seems to be the only thing I can do to maintain the extra 15 and not put any more on.

My docs don’t know enough about GBS to seem to help. Most of what I hear is something along the lines of IVIG (or heavy doses of antibiotics) killing off some of the “good” bacteria in my gut, blah, blah and nothing definitive to counteract.

I would LOVE to know if anyone out there has gone through anything similar. It’s sooo frustrating!!

Thanks and take care![/QUOTE]

wow can i relate to this. I threw up every night for over a year, i would lay down and as soon as i fell asleep i would start throwing up. ny neuro said it wasn’t the gbs but my primary said it was. i know i didn’t do it prior to gbs, my bowels have also been different since. my weight is atrocious, i cannot lose it for anythign. of course i have trouble exercising but still..and now i love food. so many things have happened in the last 2 1/2 years it is amazing. but i can handle anything..:p

Hello everyone this is my return to the forms after a 3year absence.
I have had nothing but GI problems since onset of GBS in 1995. Some days cant go, other days going all day with diarehea. sp My return to this site is all about having ongoing symptoms and living in an area with no medical help with the GBS. So glad we have each other to get through this stuff.
Ladyhawk

This is my first post. I have been having loose bowels since using the gabapentin (neurontin). This has been happening since before I had the IVIG for CIDP. Does is anyone suffering from bad (but not migrane headaches). Also, a friend of mine keeps saying that she has found articles condoning the use of marijuana for the pain associated with CIDP. Unfortunately, I never seem to be able to access these articles. Anybody know? Also has anyone experienced severe irratability from IVIG or did I just get immonuglobin from crabby people? Kidding about crabby people but not about the irritability.