# Long ago member with new diagnosis



## custer (Sep 29, 2015)

Long long ago, on this board, I was very active. I even participated in several studies that were done through this site.

My life took a detour and now that I have a new diagnosis I want to share how I came to it, how long it took and what we all should KNOW.

When I was 25 years old, I went to my doctor complaining of diarrhea so bad that I felt I could achieve lift-off at times. He sent me to a GI doc that did a sigmoid, exclaimed "IBS," gave me imodium, told me to avoid dairy and eat bland foods and sent me on my way.

In my 30's I began to experience horrible urgency and pain with the diarrhea that I had just taken as fact ... IBS. It became relentless and I was seen by a gastroenterologist who did a colonoscopy. No biopsies, just colonoscopy. He said..."IBS" and I took him too at his word. I was given bentyl and lomotil and told not to bulk (drink liquid) while dining as it was felt it produced quick set diarrhea. So dutifully I went off for 10 more years and 4 more colonoscopies with the same proclamation.

In my 40's I began getting anal fistulas, and in I would go for surgery. This left my anal area scarred and well...that colo-rectal surgeon looked at me at one point and said, "why do they keep telling you IBS, this has to be IBD." I shared this info with my gastro who did more colonoscopies and told me nope...no evidence of inflammation..."IBS." He gave me questran to add to the mix, told me to eat more fiber and sent me on my way.

I developed h pylori in my late 40's, and ended up with c. diff from the treatment of the h. pylori. My family began to worry that this was something else, something more sinister, that the docs were not catching. I also had the ever delightful...lichen sclerosis of the vulva and anal areas. Look it up. You'll be...glad you don't have it!

In my 50's I divorced, moved to another state and began my gut doctor journey there. Colonoscopies, egd's and what do you know..."IBS." After 3 years there I moved back to my home state. I was also diagnosed with Undifferentiated Connective Tissue disease and am being watched for Scleroderma.

Last year, at age 55 I was in the hospital for a week. Dehydration so bad from the diarrhea that I went through 15 bags of rehydrating nectar before they'd let me go. My blood literally clotted when they tried to take it. They could not determine what in the world was causing all this water diarrhea. Green bile, water...it was horrible. 10 x PLUS a day on certain days. Once I was stable, they sent me home with instructions to drink more...yep, drink more.

Two months ago...that same horrible dehydrating diarrhea started again. It is relentless. It wearies me. It keeps me up all night. I am glad my job has me with an office with a bathroom in it. I decided to see a doctor at the U of Michigan who specializes in rare bowel disease.

She did yet ANOTHER colonoscopy and egd, but this time, my friends, she took MANY biopsies. All over biopsies. Belly, bowel...yep, lots...and guess what she FINALLY FOUND? Lymphocytic Colitis...in other words, Microscopic Colitis...in other words IBD, not IBS.

All these years...30 of them, where I did what I thought was right...all these years when I just took their word...IBS. All these years I hurt and missed out on things and THEY WERE WRONG!

MC (Microscopic Colitis) doesn't show in a colonoscopy. It doesn't show in a sigmoid. It only shows in a colonoscopy with biopsy, LOTS of biopsies as it can be spotty.

My advice to those of you with IBS-D, get yourself to a doctor that won't just LOOK at your colon, but take biopsies. My mucousal layer is lovely and pink, no scarring, no inflammation but that layer just below it - that you cannot see without a microscope and biopsy - is very sick and has been this way for some time.

I'm now working my way toward remission. No dairy, no soy, no gluten, and NO FIBER...do you see that? NO FIBER. It messes up those of us with MC. So again, all those years, I took my fibercon, ate food I knew was making me worse, but did it because I was told to. All those drugs I tried (amatryptaline, etc) and all along, they had it wrong. 30 years. Sigh.

Don't let this be you. Colonoscopy + diagnosis of IBS-D = DEMAND they check you for MC.

And that's me...done


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