Sorry, I forgot to ask......

Does anyone here take Tysabri for Crohns? I am on Tysabri for my MS but I have read that is also used for CD & I just had my 11-th infusion of Tysabri & the Crohns does seem to be a bit less 'bathroom' wise anyway.... I am hoping it will help in both the MS & Crohns for me... So far, it seems to be doing just that.
-J

I hear you on the work issue- I actually went part time- to dang tired to work full- especially with a hubby gone over-seas and an acitve almost 7 year old. I actually have FMLA for my CD, which to some degree protects my job- but just not being able to fire you if you miss up work certainly doesn't mean that you don't deal with attitudes and the insinuation that you are "faking". Did you say you had tried Citricel or something along those line?

Have you been checked for C-Difficile? Perhaps that is why. Ask your doc to check (need a stool specimen and it must be checked VERY quickly after getting the specimen). I caught it in the hosp. during my resection surgery - it took a while, 2 rounds of Vancomycin (very expensive drug but the others (Flagyl and something else) did not touch it! I also used Florastor - super duper probiotic.

I can sympathize - its really depressing to deal with those symptoms - and feeling weak, etc. It used to control my life and I thought it would never stop - but it did for me (I had my resection June 08 and it took months before I felt good - I still watch what I eat and when - and make sure there is a bathroom close by after eating. Good luck!

Hi, I have not tried Tysabri but it looks like it is a immune suppression drug. I have tried citrucel before and it did not help. Been tested twice with my stool samples over the past few months for nasty bugs and they found nothing. My 36 year experience with Crohns, I can't tell you how many times people thought I was faking my Crohn flare ups. My parents, girlfriends, employers, Ex and friends. Believe me the pain is real and all I can say it really sucks. Over the past week I took myself of all pain meds and I don't feel tired all the time. Which is a good thing. I am just trying to deal with the pain the best I can. Doctor had me on Oxycodone Hydrochloride Oral Solution. If I need any more pain meds I might try medical marijuana. Used it before and worked well for me. I want to stay away from the Oxycodone type of medicines.

Do you have any of your large colon left?I have had an ileostomy for 13 years. My life changed for the better. Check out my story.

RynetteB

I have 2/3 of my large colon left. My Crohn's is right where the small meets the large. So with every operation they take out a little of the ascending colon. Most of the problem is with the small intestine. Since my last operation in Nov I do not have any active Crohn's. A few weeks ago I had the camera pill test to confirm there was no active Crohn's in my whole system. I just want this big D thing to go away. Even thought I do not have any active Crohn's somehow the diarrhea is causing a lot of cramping and gas. When I have no diarrhea i have no pain.

One other comment. The worst thing about the Diarrhea is when I have to fly. Boy that is fun. I believe the cabin is pressurized to about 6000 feet which increases the amount of gas in my system. The only solution I found is to not eat the night before a flight and during the flight plus I use glycerin suppositories the morning of the flight to help get everything out. The only thing I do is drink lots of water and when I land I start eating. Does anyone else have a problem with flying?

When I have to fly I do NOT eat anything for at least 24 hrs before flight... Makes for a very hungry me when I get to where I am going! Then the flight back home is the same...UUGGHH
My last flight was to see my mother-in-law for her 90th B-day so hubby & I flew the 3,000 miles there for that day. Unfortunatly we arrived late on a Thur & had a home flight early on Mon SOOOooooo I didnt eat the Wed & Thur before & didnt eat the Sun & Mon for the home flight.... whew... was terrible BUT I didnt embarrass myself or hubby at all by having 'stuff' happen during flight.

Since I also have MS & I am not mobile it makes it even more difficult during flight cuz I cannot walk to the bathroom on board without help....

I dont think I will make the trip for her 91st....... ;-)

-Jan