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!
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?
Research on how many people start out with IBD and then get one or more Auto Immune illnesses as well as multiple surgery complications from IBD/Ostomy and/or other Auto Immune illnesses
I've seen it happen over 100 times in all my years as an IBD advocate. Patients have IBD & one or more such as MS, or Lupus, or RA, Fibromyalgia, Diabetes, Lyme's, and more. I myself have Crohn's, Uveitis, Raynaud's & Acne Rosacea. Some of us are further compromised or vulnerable due to multiple surgeries and aging (females) complications such as Osteoporosis, adhesion formation, and more. This leaps off into mental health, financial stability and sexual functions.
Infertility Care Among Men and Women With Inflammatory Bowel Diseases in the CCFA Partners Cohort
The impact of ostomy on quality of life and functional status of Crohn's disease patients within CCFA Partners