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!
Do those who have had surgery find their quality of life better with the ostomy or by stooling through the pouch?
I have a recent diagnosis of Ulcerative Colitis and think that I will need to have surgery in the near future.
So many patients with IBD avoid high fiber foods for fear of exacerbating their symptoms. A previous CCFA Partners study "Avoidance of Fiber is Associated with Greater Risk of Crohn's Disease Flare in a 6 Month Period" addressed this, but unfortunately did not differentiate between soluble and insoluble fiber. There is not enough research on IBD and diet in general, but I believe it is so important, because we all have to eat. A high fiber diet is considered to be important for many aspects of good health in the general public. But insoluble fiber specifically is a part of the diet that is widely considered by IBD patients to be taboo. This thought is based on our own personal conclusions rather than on good, solid research. I want to know if and when it's safe to eat fruits and vegetables, and how to prepare them.
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.
What is the nutritional impact (loss of nutrients) which a person with IBD (Ulcerative Colitis) experiences when their Colitis is in remission.
I have been in remission for 6 years, yet I seem to not be absorbing Potassium, producing Vitamin D - even though I work outdoors year round in a city that claims 360 days of sunshine, and seem to not be absorbing several other minerals. I suffer from chronic continuous calcium oxalate kidney stones due to calcium binding with oxalate instead of magnesium citrate or potassium citrate. The nutritional absorption in the colon would be especially useful for drs to treat patients like me as medication absorption also seems to be an issue.
Why isn't the BCIR procedure given as an option for patients who have severe UC that no longer are responding to meds?
In 2012 I had my colon removed due to Anal Cancer and Severe Ulcerative Colitis. I opted out of having Chemo and Radiation. My UC was so severe that I would have never made it through radiation treatments. Having to wear a bag was not what I wanted so I chose to get a BCIR under Dr. Rehnke at Palms of Pasadena in St. Petersburg, FL. It was the BEST decision I have ever made. I had UC for almost 30 years and suffered Daily. I feel as if I have a life now. My Quality of Life is unbelievable. There is nothing I can't do now. I don't have to memorize where bathrooms are anymore. I plan when I go to the bathroom instead of my body telling me when I go. It is amazing and I highly recommend it. I can not believe I suffered when this debilitating disease for so long. I had no idea about the BCIR. Everyone should know this is an option and can totally change your life. NO ONE should have to suffer like I did. Please let everyone know that this is an option. It is their choice from there on out, but at least people will know about it. It literally saved my life."
I have my colon removed because of Ulcerative Colitis, I want to know what kind of supplements (vitamins) I need to take, which are the ones that absorbes thru the colon and I will not have enough.
Because other patients can be in the same situation and is important to know what to do
By monitoring several IBD forums, I see that people frequently have questions about various neurological complications like numbness, tingling, nerve pains etc. Current research is mixed on whether or not there are neurological extra-intestinal manifestations of IBD.
What is the effect of vagus nerve stimulation in ulcerative colitis? What is the effect of an implanted VNS device on UC? What is the effect of a transcutaneous VNS device on UC?
Vagus nerve stimulation has been studied in Crohn's disease with promising results, and needs to be studied in ulcerative colitis, so that all patients with IBD may have access to this new therapy that has shown success even for patients who did not succeed on oral or IV medication. For example: https://www.newsday.com/news/health/crohns-drugs-feinstein-institute-1.20780533
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