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!
I tried this as a last resort 3years ago during a very serious flare up of UC and it not only put me in remission but I have not felt this healthy in over 9 years!! Have been thru many stressful situations since being in remission and absolutely no symptoms of a flare up!!!!
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.
When I was diagnosed with Crohn's, my GI told me that diets don't work. After my GI recommended Humira, I decided to try SCD before I tried such a potent medication. The diet started working within days and, by the end of the first month, most of my symptoms were gone. Today it's been over a year and a half since I've had any significant symptoms. I would like to know if SCD works for others and, if so, what percentage of patients.
“Milk fats increase the amount of taurine conjugated bile acids that promote growth and metabolic activ ity of sulphate reducing, bile acid tolerant bacterial species, which in turn stimulate pathogenic immune responses in genetically susceptible hosts” Sartor, R. B. Nat. Rev. Gastroenterol. Hepatol. 9, (2012)
Mouth problems have been associated with IBD, however, these problems have historically been explained as a symptom of IBD. I would like the hypothesis tested that mouth problems (e.g. possibly due to an altered oral microbiome) may be a trigger of inflammation, and not a symptom (i.e. good oral hygiene is associated with less gut inflammation). Background information: It has been shown that the oral microbiome in IBD patients differs compared to healthy controls (https://www.ncbi.nlm.nih.gov/pubmed/21987382). Anecdotal evidence: I notice a worsening of symptoms when I do not regularly floss. I'm an epidemiologist, so I know there is little value in anecdotal evidence, but still wanted to share my thinking!
The prevelance of careeganan in the diets of those who have developed Colitis / chrones. Secondly how foods with this present effects the prevelance of associated symptoms
The current research around careeganan shows that this is harmful and damages the body in the way colitis and chrons presents itself. If this information is not widely known people continue to expose themselves to harmful foods.
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.
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