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.
Can fistulae (particularly perineal/perianal) be caused by holding in BMs for long stretches of time? Specifically, is this occurring in children and teens with IBD?
I had diarrhea from age 11 (1971) without a diagnosis until 1978 when I had a perineal abscess drained by a gynecologist in the hospital. I could see that it was a fistula (dad had medical books around the house). About a week later, while on Cleocin and Keflex, my colon perforated and I almost died before expl lap and temporary colostomy to "rest" my gut. I'd had 7 years of public school, holding in the stool all day, until I could get home. I was not comfortable having diarrhea at school, either because of complaints from kids or smokers who dominated the bathrooms.
I have noticed significant changes to the number and viscosity of stool output based on Atmospheric Pressure (flying), Barometric Pressure (ground) and Humidity re CD and esp Colostomy ballooning. Friends w/IBS have also noticed such changes. I can submit 2 related articles via email (how?) for reference. Robert Huber, Scottsdale AZ 480.551.0520 Ostomy@AllCampusCard.com
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.
It was 40 years ago that I had surgery at the Cleveland Clinic by Dr. Fazio for Crohn's dis. I have diarrhea secondary to the surgery but have not had a recurrence. How common is this? All insurance policies say I must report that I have Crohn's.
Maybe patients can be cured. I think a survey of all patients who have had extensive surgical resection with temporary iliostomy may reveal that there is a chance for a cure.
For those with temporary ilieostomies, we should study treatment options available for healing and maintaining the health of the colon while it is disconnected.
For those hoping to reverse their ilieostomies, there is no guidance on how to ensure the best chance for the disconnected colon to heal so that reversal of the ostomy is possible.
Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort
Sexual Interest and Satisfaction in an Internet Cohort of Patients with Inflammatory Bowel Diseases