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 know two other women as well as myself who all agree that had their UC which changed into much worse fully involved crohns after menopause. GIRD, illeum strictures, rectal fishers, stomach and esophagus ulceration, mouth sores...
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.
Improve interdisciplinary work between GI and GYN to better serve female IBD patient base. Improve education of women IBD patients about their specific risks, ie of chronic pain after fistulectomy.
Women's sexual health remains an underfunded research area, and female IBD patients are at higher risk to suffer from chronic sexual pain.
How safe is it for IBD patients to become pregnant? How do medications affect the child, and what steps should the parents take before deciding to conceive?
There is very little research available to patients on the effects of IBD medication on unborn children. Many patients are left trying to weigh the risks themselves, without a complete understanding of the long-term effects.
As a UC patient, I would do anything to try to prevent my kids from suffering from IBD as I have. I wish I could have known if the very start of their lives might have some impact on their possible IBD futures.
Is there a correlation between women's monthly menstruation and IBD-related flares? If there is a correlation between these two event, what can be done to reduce flares and/or reduce flares severity?
As a woman with IBD, I have experienced a once monthly abdominal pain since being diagnosed with IBD that feels like it is intestinal and subsides after one part of the cycle concludes. GI's have confirmed they have noticed women w/IBD often complain of IBD pain at specific times in the menstrual cycle.
Is there a relationship between maternal, fetal, or early childhood infection and the development of IBD later in life?
My mother contracted shingles when she was pregnant with me. I believe my Crohn's could potentially be related to prenatal immune stress caused by my mother's infection. Mothers and fetuses share hormones, immune cells and other factors that could impact the development of the immune system in the fetus. A potential mechanism for this could involve epigenetic changes in the expression of genes related to immunity.
What is being done for surgical research to improve the lives of patients with multiple organ removal due to IBD/Ostomy who experience pelvic floor total collapse, including sexual function?
So far, reconstructive surgery to assist aging or disease complication organ losses causing serious pelvic floor collapse, sexual function seems IGNORED. When a woman has breast cancer, she is accepted and provided a method of reconstruction surgery to feel WHOLE and this assists both body and mind recovery in surviving her cancer. When an IBD patient spans losses and complications over time to end up with a non-immediate loss of feeling WHOLE, there's little to no information or medical access to having the RIGHT to be rebuilt and developing methods to surgically repair to reasonable expectations the pelvic floor, core and sexual health of someone who is missing large intestine, uterus, cervix, small gut and other organs from their illness trajectory to survive. Many of us are left at young age without our sexual function. We develop urological, bone, muscle/tissue wasting and other serious impairments and are ignored or told to "live with it", as the only answer. Where is the surgical research to develop and normalize the many of us suffering without answer?