Help! How do I stop this constant gas/foul odor !?

[KimK1]

I have had Crohn's disease for about 36 years.  Have had everything you can imagine with it. Obstructions, adhesion's, strictures, fistula's, bowel resection and a 2 1/2 year time with a temporary colostomy bag.  According to the doc's I got a pretty "tough" case of it, and it seems to run in the family ( Mom, Grandmother and some 2nd cousins)

I have been on every medication out there with little or no results.  Gone from hospital to hospital - doctor to doctor, suffering in such pain I could barely stand it. Either sleeping due to sheer exhaustion, or running to the bathroom to poop.
I spent so much time on the toilet, I started developing brown spots on my rump cheeks where the bones are. I was under nourished because everything I ate went right threw me !

My life existed it seemed solely for this stupid, nasty, painful, embarrassing illness.

THEN, finally !!!   A doctor that had heard of The University of Chicago - Crohn's & Colitis Foundation, and he suggested I go there.

I went.  The Gastro doc's quickly figured out my problems and got me on an immune suppressant. One that actually worked !  (Purnithol).

I finally started to have something that actually resembled A LIFE !!!

After several years a new problem arose.   GAS.  horrible, frequent, embarrassing, unexpected, foul odored gas.

I have tried to figure it out..a particular food/drink ?   There is no rhyme or reason and it's getting worse.  Especially at bedtime.

I feel all I do from the time I hit the sack till morning is pass gas !   It's crazy.  There are times my children will walk in and go, Oh Man, it reeks in here Mom....and it does !

I have asked the doc's...no help.
I have tried every over the counter medication I can think of...nothing.  I'm divorced and would like to "move on" with my life...start dating, but this problem is not something you can hide, if you know what I mean !

There has to be a reason and a solution. I'm just hoping and praying someone out there knows it.

Thanks,

Kim  

[KiwiDel]

Hi Kim,   I have just found a website that may help with our problem (have suffered with all the same symptoms for several years as well)  It is called Journey with Crohns Disease.    It seems to cover everything we want to know.  Good luck to both of us.
KiwiDel

[KimK1]

WOW...  How sad.  I was really hoping someone out there had some answers for this, but nothing.   How dis heartening   :o(

[Ufrustrated2]

so many many thanks for your post and those like it. i've mentioned (tried) to doctors over the years these symptoms and to friends, you so well listed, i couldn't get anyone to see the picture.  eventually didn't think anyone out there could ever relate.

they are switching the MS DMD as the current one i'm on, copaxone, isn't helping much.

i find more people on this list "more at home with my gastro, ect symptoms" than those of us with MS. MS can and does cause some gastro problems, but my history of gastro symptoms mimic more of what is said here than at MS community.

i hope by end of year to have ruled out or in a IBD or rule it a MS secondary.

thanks for your post

[KimK1]

so sorry to hear about your MS.  Hope that you have found the right meds to manage it.

Thank you for your post !

Kim

[Ufrustrated2]

i have the same issue with gas, haven't dated in years due to it and seldom go out and eat with folks.

as you say, no rhyme or reason.

no diag for IBD but for IBS. waiting to get my small intestines checked. i do have ms though.

and this particular condition lost its humor a long time ago.

i can empathize, hope someone has some ideas