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 the long term effectiveness of bowel resection as a treatment? What % of people are in remission at intervals of decades following surgery? What factors lead to longer periods of remission?
I have the experience of a surgery in about 1972 and continue to be in remission. Knowing more about why some surgery is sucessful like this seems like it would help inform treatment choices.
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.
It took 16 years to verify my Cohn's, from age 13-29 years. Had all sorts of tests and was treated like I was crazy. Spent a month in treatment due to anorexia because eating was so painful. Diagnosed by having exploratory surgery. Because of that I had malnutrition, lost all my teeth and suffered way too long.
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.
How likely is being put on Remicade for Crohn's Disease going to stop the recurrence of fistula's and abscesses to prevent having to have surgeries?
I have had four abscesses removed via surgery thus far and one fistula removed. However, another fistula has been found via a recent ultra sound I had done which I was told most likely will need to be treated with another surgery.
What is the success of remission for people* who have surgery, or resection, versus those who are treated by medications only? (*Note: people who qualify for surgery)
I heard from a parent of a teen with IBD that the doctor wanted to avoid surgery. I have been in remission for years after I had a resection.
Given the increased interest and implications for altered gut microbiome in IBD, I think it is important that investigations into how surgical treatments affect the new digestive structures. Looking comparatively at pre-surgery microbiomes and post-surgery microbiomes may give insights into how to most effectively treat UC, should the mechanisms that cause the disease still act in the absence of a colon.
The use of a specialized technique in Physical therapy developed by Clear Passages to alleviate intestinal obstructions to prevent surgery and mediate obstruction symptoms.
I have used this therapy to alleviate symptoms of intestinal obstruction and alleviate symptoms associated with blockages. It has prevented me from having surgery twice now. I have had two surgeries in the past and the adhesions plus active crohn's predispose me to intestinal blockage and obstruction.
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.
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?
High Patient Activation Is Associated With Remission in Patients With Inflammatory Bowel Disease
Patient-Reported Outcomes and Quality of Life in Patients with Ileal Pouch-Anal Anastomosis (IPAA)