In this area you will be able to:
- Propose, vote on, and discuss research ideas
- View current studies
- View published research
Here, you can submit a research idea to the community, cast your votes, and discuss research ideas proposed by other members. Please make your research question as specific as possible. Other members will vote on your research idea, and we will prioritize research ideas with the most votes.
You are allowed to vote for your own proposed research idea if you want. However, you can only vote for a total of five research ideas. If you have already cast your five votes and an idea you like even more is proposed, you can change your votes at any time to reflect your current preferences.
The research team will review all submitted ideas and provide a response to you and to the community. If your idea leads to an IBD Partners Study, you will have the opportunity to serve as a patient collaborator on the research team for that study.
We encourage you to prioritize the ideas that are most important to you, even if the research team determines that your idea is not a good fit for IBD Partners. We will share ideas labeled “Not a Good Fit” with researchers outside of our network when appropriate. We want to make sure all of your votes count!
Thanks for your participation in this important platform to help the IBD research community understand what research questions are important to patients. We are passionate about finding answers to your questions!
How many people who have had a resection suffer with ongoing diarrhea? What medications/OTC drugs are most effective with this problem?
This is important for quality of life... and perhaps surgeons will be more conservative in cutting if there is a chance to save important regions of the intestinal track!
What is the long term effectiveness of bowel resection as a treatment? What % of people are in remission at intervals of decades following surgery? What factors lead to longer periods of remission?
I have the experience of a surgery in about 1972 and continue to be in remission. Knowing more about why some surgery is sucessful like this seems like it would help inform treatment choices.
I would like to know the incidence of relapses of disease (Crohns, UC, other IBD) immediately following a colonoscopy, when the patient has been in remission prior to the test.
I was in remission with my Crohns for years and had an colonoscopy and have had active disease ever since, for over 3 years.
What portion of IBD patients also have IBS? How can IBS be accurately diagnosed in patients with IBD? How can patients/clinicians identify symptoms due to IBD versus IBS, and what treatments are best?
Irratable bowel syndrome (IBS) has many of the same symptoms as inflammatory bowel disease (IBD). Many patients with IBD may also experience IBS making it difficult to know how to treat given that the two conditions are managed differently. Clinicians sometimes attribute symptoms of abdominal pain or diarrhea to IBS without further investigation. I would like to see further study into why many patients continue to experience IBD symptoms when clinical signs suggest remission, and how to best manage these symptoms. I would also like to see how frequently IBS is inaccurately diagnosed.
Gives insight into options other than medication when nothing else has worked.
I want to know what the "regular" screening process is for others.
How can the sCDAI be accurately assessed for Crohn's patients who experience constipation and not frequent and/or loose bowel movements?
Diarrhoea is not a symptom in all Crohn's patients. This causes two primary issues. The first issue is the length of time to be tested and diagnosed as constipation is not often seen as a symptom. Second, most disease activity surveys/charts/measurements become inaccurate for those who do not experience loose, watery stools. This only adds to the frustration and alienation of the patient from society and now their own IBD community.
It took 16 years to verify my Cohn's, from age 13-29 years. Had all sorts of tests and was treated like I was crazy. Spent a month in treatment due to anorexia because eating was so painful. Diagnosed by having exploratory surgery. Because of that I had malnutrition, lost all my teeth and suffered way too long.
How likely is being put on Remicade for Crohn's Disease going to stop the recurrence of fistula's and abscesses to prevent having to have surgeries?
I have had four abscesses removed via surgery thus far and one fistula removed. However, another fistula has been found via a recent ultra sound I had done which I was told most likely will need to be treated with another surgery.