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!
Food is a major creator to our symptoms and without proper knowledge of what is upsetting our immune systems and causing our inflammation we will continue to suffer. I've currently been researching food intolerance tests and found as all things there are good and bad opinions towards the different food intolerance methods but in my reading I discovered many believe the tests are not entirely conclusive. If we created a test to easily determine the foods that cause us any irritation we would have a much better chance of going into remission by avoiding the foods that create inflammation.
Can fistulae (particularly perineal/perianal) be caused by holding in BMs for long stretches of time? Specifically, is this occurring in children and teens with IBD?
I had diarrhea from age 11 (1971) without a diagnosis until 1978 when I had a perineal abscess drained by a gynecologist in the hospital. I could see that it was a fistula (dad had medical books around the house). About a week later, while on Cleocin and Keflex, my colon perforated and I almost died before expl lap and temporary colostomy to "rest" my gut. I'd had 7 years of public school, holding in the stool all day, until I could get home. I was not comfortable having diarrhea at school, either because of complaints from kids or smokers who dominated the bathrooms.
Sequence the DNA of components of patients' microbiomes to find any associations with variables like severity of symptoms, location of disease, extra-intestinal manifestations and response to medications.
The 'genome' of a patient's microbiome could provide guidance in treating with specific medications and/or probiotics.
I believe there must be something - ala 'post polio syndrome'. There are no explanations (or treatment, except for partial symptom relief) for what is happening to me. I believe there must be some connection, likely through auto-immune issues, perhaps related to the bowel surgery I had - which supposedly 'cured' me. I cannot be the only survivor experiencing these things.
It would be useful for those of us with jewish ancestry for our kids
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.
Yogurt, sauerkraut, kimchee have naturally active micro flora and have restorative properties in healthy digestive tracts. Can they help maintain remission?
Many people seem to have less disease activity when they switch to a diet that restricts sugar, wheat or grains. Could there be a connection between high insulin levels (with or without diabetes)?
What is the success of remission for people* who have surgery, or resection, versus those who are treated by medications only? (*Note: people who qualify for surgery)
I heard from a parent of a teen with IBD that the doctor wanted to avoid surgery. I have been in remission for years after I had a resection.
I have been tested negative for celiac and gluten sensitivity, yet avoiding gluten improved my flare-ups, symptoms, and overall quality of life tremendously.
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
A Novel Patient-Reported Outcome-Based Evaluation (PROBE) of Quality of Life in Patients With Inflammatory Bowel Disease