It's been awhile since I posted but I want to share this story. Twenty months ago I moved to Kansas City which of course means new doctors. Previously I lived in a college town of 20,000 people in rural north central Kansas where I received a diagnosis of my LC within 6 weeks after I became ill. I also enjoyed being treated by a progressive ARNP of the area's GI docs. She was supportive of my diet changes and when I brought in my food and poop log we would pour over it together looking for trends. After 3 years of the strict GF, SF, DF, Egg free diet I had another colonoscopy where my biopsies showed that my immune system had backed off, there was no inflammation and the white blood cells were no longer clustered but spread out as they should normally be.
So, now in the suburbs of KC I landed with an excellent GP- she and her ARNP were very interested in my journey with LC and very, very supportive of the diet changes I made. They looked at all my tests with interest and were impressed with my progress (thanks to the advice I received here). However, I was starting to have nausea again and was waking up at night with chest pains. All this translated to upper GI issues and I was referred to a group of GI docs.
By now you should be smiling because you know where this is headed. I'm now well educated about LC and I've been treated and followed by docs who have been open minded and supportive, and have been in remission for 2 years. My first appointment was with the PA for the GI doc. I explain my symptoms that got me there (nausea, chest pain/reflux) and that we tried Nexium which helped with the upper GI issues but it gave me D. Her comment "but people with Lymphocytic Colitis don't have nausea. It's not a feature of the disease. They have diarrhea like 30 times a day".




So I said that my LC had been C prominent and but that nausea was always a strong feature of my LC. Then she questioned the diagnosis so I gave her the diagnostic biopsy report plus pictures. It's hard to fake those. I told her I had been on Dexilant when I was first ill and I tolerated it well-so she said she would prescribe it for me and then I could see the Dr. in a few weeks. Then she gave me a choice as to whether I wanted have an endoscope or not. I said 'let's try the med and see how that goes'. Who wants to be scoped?
When I met with the Dr he also questioned the diagnosis, I showed him the biopsy results. Then I shared my diet changes. He encouraged me to try to eat gluten again. I told him I had been accidentally glutened and the reaction was significant-- like having the flu. He then thought maybe it was too soon. (I know I'll NEVER eat gluten or soy again and I know that stuff is poison to me).
But holy crap, you guys! If these people had been my docs when I was first sick, I'd still be sick-- except for the help I received here. The diet is the reason I healed and the people here showed me the way.
I hope that when you struggled with your own docs, my friends, that I gave you the proper amount of empathy because-- GAH!! --
(as a side note, I have finally started lifting weights and doing yoga again, to build muscle back and get some stamina. I am also practicing meditation and the basics of Buddhism -which is mainly coping skills for staying in the moment, not worrying, keeping things in perspective and being compassionate. But working out again is like the last leg on the journey to wellness and I'm pleased to finally be at this point).
Warm regards, friends
Carol