1. < Autoimmune Diseases

Help with Lymphocytic Colitis

Posted by mthom1217 @mthom1217, Feb 8 8:05pm

Do you know that feeling of relief when a doctor figures out why your body is behaving a certain way, only to say weeks later “how do I live with this?” I love fresh fruits. I love picking Mulberries off a tree and eating them. I use to eat blueberries and blackberries everyday. I love veggies. I love nuts. Oh pecans on a hot fudge sundae. Say goodbye to Dave’s Killer 22 Grain Bread? They told us we should eat fresh fruits, veggies, whole grains, etc… and I did and I love it! I’m angry. So now what? I need a LC mentor… friend, because just like my RA no one understands and I’m angry at their advice that has nothing to do with what I’m going through. Please… anyone out there?

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kayabbott | @kayabbott | Feb 11 9:34am
In reply to @vgen "You explain very well. I had same experience. Budesonide Got rid of runs for me 5..." + (show)
@vgen

You explain very well. I had same experience. Budesonide Got rid of runs for me 5 years ago. Now it was my 5 year colonoscopy and ugh, i now have the runs. Also, have other auto immune problems. Just can’t get rid of the inflammation now matter what i try. Organic etc.

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I have a number of autoimmune diseases. It is irksome having to control ones diet, stress, exercise, and everything else. Hopefully my Budesonide keeps working after I am done dosing. My food log of what I can't eat keeps getting larger.

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itsmeagain | @itsmeagain | Feb 11 9:35am
In reply to @slkanowitz "I was just diagnosed with colitis (unknown type) and after a lifetime of high fiber diet,..." + (show)
@slkanowitz

I was just diagnosed with colitis (unknown type) and after a lifetime of high fiber diet, loving fruits and veggies, nuts, am on a very low fiber diet. It kills me to eat white bread and cook my few veggies to mush! Going on2-3 months with colitis at age 75, and not yet under control. Still eating Imodium daily. Doc put me on mesalamine which helps but I need a higher dose. We just installed 2 Kohler toilets with bidet in the seat- a Godsend for keeping my rear end clean…. Oh the maladies are endless when it comes to autoimmune diseases! I have 7 and wonder what is next. Hopefully I have my fair share and no more in the wings! I hope we all get some good relief! Diarrhea is the pits or should I say the shits?! Gotta keep a sense of humor to survive all this 😊

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@itsmeagain
My gi has prescribed 3mg Budesinide every 48 hrs which has helped some with my collageounes colitis. However we are now going to increase the dosage.
But yes, colitis is one of the worst ailments I can think of.
Good luck to all of us.

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lighthouseceliac | @lighthouseceliac | Feb 12 9:57am

We all have unique bodies so we have unique solutions. I was on high doses of Imodium at first in ‘22, then Budesonide, the finally Colestipol or Colestyramine. The bile acid meds have been the only thing that kept me in the game of life. I was better the next morning after my first colestipol dose. I was diagnosed with celiac sprue in ‘13 so already being on a GZ diet was helpful, also being on a good probiotic and prebiotic regiment.
I eat everything now (except wheat barley rye and oats). I also am back on statins. I have remission for short periods of time but not long term yet.
My life is pretty much back to normal.
It can be miserable until you get it all figured out but LC and Celiac is something that can be managed.
No one understands around me but I am very thankful that they don’t need to be.

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