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!
Anti-TNF therapy has been proven to treat both Crohn's and uveitis. There is no research yet on whether anti-interleukin therapy is effective for uveitis. My personal experience has shown that anti-interleukin therapy does not work on uveitis. Is my hypothesis correct?
What are the pros and cons of the different biologic medication options and how do they compare to one another? Is there a specific order that these should be tried?
With an increasing number of patients taking biologic medications (remicade, humira, entyvio), we need to know how these compare both in remission rates and side effects
What kind of medications/andor/diet can be beneficial for older Crohn's folks who have had multiple resections over the years and have a shorter bowel left?
Most all research seems to be preventive, and that is good for those who only have a few feet of good bowel left, but there is still nothing specific for management of Crohns short bowel people. There are alot of us who have been hanging around now 40+ years with 8 to 10 resections because surgery was the primary treatment (or steroids) in the 70's and 80's.
Wondering if many people taking these drugs have this disease
What is the nationwide average cost of Remicade per 5mg/kg? It seems that this number fluctuates immensely from state-to-state. Would be curious what they pay in Canada too.
When I moved from NYC to Vermont, my Remicade quadrupled. I receive 10mg/kg, so 800mg, every 2 months. In NYC this would cost me around $6k each time. In Vermont it's $24k each time. Very concerning.
Divorce rates are high enough, but what happens in a relationship when severe disease and various (mood altering medications and conditions) factors make one partner the breadwinner and caretaker of a sick person. What does the sick partner do to maintain mental and marriage health. Include child rearing, family financial stability maintenance, sexual relationship, care giver "burnout" such as not feeling like spouses and partners any longer. Patient loss of roles and esteem. Post divorce, patient ability to survive alone having little to no ability to be financially stable, get housing, food, healthcare and mental support. How many marriages become mentally or physically abusive when there is an ill (IBD or multiple illness/complications) endangered?
I have had amazing success in treating my UC with an herbal formula (called Isatis Cooling) for about 15 years and wish that other people knew of this option. I understand that many other people have had similar success, however the medical community generally does not make patients aware of such options (even as a last resort prior to surgery or medications with known severe adverse side effects). It seems that their reasoning is that they are not aware of these options, or if they have heard of them (and their anecdotal effectiveness) they still do not even mention them to others because there is no "scientific evidence" to support their effectiveness or safety. I feel this is a disservice to patients. Doctors should be aware of the range of available options and help to spread this information (even with caveats about the lack of study), as mine thankfully did. In the best case, studies should be done on the effectiveness and safety of herbal remedies.
In 1960 I had very intensive pain on my abdomen. After all attempts by doctors to stop the pain failed the next solution was to remove the inflamed portion of the intestines. My mom wanted the opinion of a doctor in Milan, Italy. We traveled there and the doctor touched my pain area and I fainted. He had a prescription ready when I woke up while my mom was attending me. He prescribed 3 shots of the following medications: Methionine, Vitamin B-12, and Vitamin K. A two week treatment and I woke up following the treatment brand new. No pain, no acid stomach or reflux, no allergies toward foods, cristal clear brain and eyes, and lasted for 3 years where I ate everything. Looking back a clean Liver controlled Crohn’s disease. I almost died from the treatment of Metacatpurine an immune lowering Crohn’s pills. If I wouldn’t have stop taking them two months before my stomach flu, that the entire office had, the doctor at the emergency room said if the pills were in my system he couldn’t save me. Why lower the immune system when a clean liver can control the disease. I am controlling Crohn’s and ulcerative colitis with Liver supplements and diet. The Liver loves vegetables specifically raw vegetables. I can stop inflammation pain within one hour with raw vegetables smoothies every time with no variation. I do consume protein with vegetables in smaller quantities. The main source of impact for the disease is flour products such as bread, sugars, and carbohydrates since they convert to sugars. I had 50 years of acid stomach and reflux where no doctor was able to stop it. But as I changed my diet and removed bread and carbohydrates from my diet the symptoms completely stopped. That to me was much better than Crohn’s problems since the acidity produced ulcers in my stomach and esophagus where I couldn’t swallow any more. I hope this information will create a new view in treating Crohn’s disease and many other diseases since the Liver seem to control our health. Thank you for consideration.
Biologics can cause cancer, a risk I will never take. I'm allergic to antibiotics and steroids are not good for long time use. I'm on immunosuppressants but there needs to be another option.
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners
Patient-Reported Outcomes and Quality of Life in Patients with Ileal Pouch-Anal Anastomosis (IPAA)