Lymphocytic Colitis is a rare disorder characterized by diarrhea.
Hi, I am recently diagnosed with LC and I hope my experiences will help, however I am 53 years old. I was finally sent to the Kansas Univ. Med. Center and got my diagnosis there. I took Pepto-bismol four times a day for a month and then had about six weeks of normal life. At my re-check in Jan. the young Dr. mentioned that I probably needed to have a bone density test since my body had not been absorbing nutrients normally while I had diarrhea. I had the test the next week and I have osteopenia in my spine. So that is something to think about. Also, a lot of my hair fell out which I learned is a symptom of colitis. The woman who cuts my hair recommended I start taking zinc and that helped, although it may have been a coincidence. Do you take your child to a regular GI or to a teaching hospital? If to a regular GI, how did you find him or her? Does he or she have other patients with this disease? Things were okay at KU Med but it takes a loonng time to get an appt. I know it makes a big difference which Dr. you have when you have a chronic disease so I am starting to wonder what to do next. In the mean time I'm going to keep telling those who ask that it's a chronic auto-immune disease and, no, it doesn't matter what i eat. I hope something helps and I hope things are going well for your little one, thanks.
Hi, I am a mom of a 6 year old recently diagnosed with this disease. I have been trying to research this topic with very little information out there on this topic that is not redundant and even less information that is geared toward children with this disease to let me know outcomes and other helpful treament strategies. If there's anybody out there, I'd like to talk with you, so please post something! Thanks!
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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