Collagenous Colitis is a rare inflammatory colonic disease.
I am 55 yr. old. This condition came upon me overnight! The Entocort has worded wonderfully, I am now only taking 1 tab. a day and the inflammation and diarrhea is under control.
Hi, My son was diagnosed with Lymphocytic Colitis, which is related to Collagenous Colitis. There's not much research, no good information that pertains to our situation. Have you found any useful sites? Most of what I see is on UC or Crohn's, which is not the same thing. Also, can I ask how old you are? My son is 6 y.o., which is from what I hear unusual. My main concern is prognosis for the long run for him, which is not very clear to me. Thanks!
Sorry, meant to mention too that I only take 3 tab. every morning, no more worry about med. all day.
I was diagnosed about a yr. ago, but had been suffering with it for 6 mn. before confirmed. No, I have never tried Asocol. Tried everything else!! This is the first med. that has worked period. Within 48 hr., I saw a change. No more bloating, "growling noises", and diarrhea!! I feel like I have my life back :) It has been a week now and I only go once a day, normal stools.
I have been taking Asocol for about three years and it def. works but I am still having to take 6 pills/ day. I was curious if you tried Asocol ? How long have you had Collagenous Colitis?
I wanted to share a treatment that finally worked for my ongoing battle with diarrhea from the Collangonous Collitis. After trying 8 different meds with no reponse, my doctor tried me on Entocort last week. Within 48 hr., the diarrhea started slowing down. By day 3, stools started to form again and the swelling, bloating had gone down. It has only been 5 days on med and my stomach is almost what I would consider normal again. Just wanted anyone who is going through the night and day nightmare with diarrhea to see if you are a candidate for this med, it certainly worked for me!!
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.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.