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!
Are there any IBD patients who are on the Paleo or Specific Carbohydrate Diet? Has this diet positively affected your symptoms?
While all IBD sufferers have unique food triggers, I was wondering if anyone has had success by eliminating certain foods.
I would love to see a study that compared quality of life and remission rates of the SCD diet, Paleo Diet and/or Autoimmune Paleo diet on Crohns and UC sufferers.
Patient testimonials have caused these diets to be incredibly popular with managing IBD symptoms. However the main argument continuously held agains them is the lack of research evidence showing their effectiveness. This sounds like the perfect role of the CCFA, which is charged with conducting research to help those in the I D community. There are now several companies offering frozen Paleo and AIP meal deliveries to individuals for about $300 per week, making a study where participants are sent all 21 meals in a week (to cut down on variation between adherence) cost effective and feasible.
I have been alternating visits with my GI doc and gynecologist for over a year. We are still having trouble pin pointing if IBD, IBS, or hormones are causing my symptoms. My feeling is that it is all three, and they are causually linked.
Anyone with a disease can tell you that high stress environments make symptoms worse and relaxation techniques often help. It has also been shown, primarily in animal studies, that "stress hormones" like cortisol or changes at in epigenes have severe repercussions across the body. Can managing these help control symptoms or remission?
The use of Cannabis for CD symptoms should be highly considered. We are constantly using drugs to manage our symptoms but with the use of those drugs can come serious side effects. If you are someone like myself who suffers from extreme nausea waking up in the morning and attempting to keep a pill down is in a word, impossible. You can't keep the medication down long enough for it to take any actual effect but taking a couple deep breaths to calm yourself and take your Cannabis is a much quicker, easier solution that improves nausea instantly. Research has shown the CBD in Cannabis is linked to incredible anti-inflammatory, pain relieving, anti-nausea, anti-anxiety, and muscle relaxing properties. This would be extremely beneficial to us CD suffers since our disease revolves around inflammation. Cannabis when used properly is a easier, safer, more effective way to relieve CD symptoms.
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.
How does disease activity and symptoms compare between patients with a vegan/vegetarian versus those who consume meat.
There are many various diets claiming health benefits but it's often difficult to compare complex diets. Vegan and vegetarian diets are simple dietary restrictions that are somewhat common and can be assessed more easily.
Research shows less colitis in mice eating high cellulose than mice eating low cellulose & Crohn’s symptoms stopped in 4 wks in 4 people eating a high cellulose (bran) cereal. Cellulose feeds good bacteria—does eating bran cereal help fix the microbiome?
Many people with Crohn's disease want to know what food to eat. There seems to be a lot of research about drugs and dietary supplements, but not much research to help people know what food to eat.
J-pouch surgery, as a final effort to mitigate UC symptoms, can be life-changing. However, it seems that little information is available describing the long-term outlook for patients who have had the procedure. With an increase in IBD diagnoses in children, it is safe to assume that rates of J-pouch surgeries in children will also increase. A longitudinal study following J-pouch patients for several years following their surgeries should be conducted to highlight any common complications or symptoms that appear over the course of time. This research would be especially significant for better advising younger patients and their caregivers.
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network
Symptom Clusters in Adults with Inflammatory Bowel Disease