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 read it all caused it but they couldn't find the fourth factor.
What factors (medicine, disease trajectory, lifestyle, diet, etc.) are important for getting into long-term remission? A scientific study of people with IBD who have attained long-term remission.
There are many research studies out there that focus on the details of IBD, whether that be particular medicines and their efficacy or the biological processes of autoimmunity in the gut. This research question asks researchers to take a step back and consider the possibility of there being other factors that have not been previously considered. For example, do people with IBD who attain long-term remission have particular variants of IBD? Do they combine certain medicines and lifestyle factors? My IBD was quite severe between 2000 and 2003. I've now been in long-term remission since 2006, with only very mild rises in inflammation as related to lactose intolerance once every few years (as measured by fecal calprotectin tests). My doctors never seemed concerned about those slight rises of inflammation, and my calprotectin levels always returned to normal rather quickly. It could be that I was just lucky in combining a number of lifestyle, diet, medicine, and other factors. I've gotten lots of questions from other patients with IBD. Many want to know what worked. I don't know that what worked for me would work for others. And I think that it would be better to look at these kinds of factors in a group of IBD patients who have attained long-term remission.
I have been a sufferer of HS for many years, even before I was formally diagnosed with Crohn's. It seems that when I have a flare, the HS flares up also. I was curious if there is a connection, how many people also have HS that have IBD diseases and what treatments have been successful (i.e. biologics, surgery, etc.)
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.
What is the role of antibiotics in triggering a flare up or induce/maintain remission (with particular focus on Rifaximin) ?
There have been a few researches showing that antibiotics might have a role in flares/remission. I have been diagnosed with UC 20 years ago and I have noticed that many times when I take antibiotics for other non IBD related issue my UC wakes up. I have also noticed that Rifaximin helps when I am experiencing mild symptoms. Could it be that some antibiotics kill the good bacteria therefore triggering a flare up and other have a positive effect killing the bad bacteria therefore supporting remission?
Why do UC patients with complete colectomy continue to have autoimmune disease as well as low hemoglobin years after the surgery?
There is very little information on why autoimmune disease remains in the body despite having a complete colectomy for Ulcerative Colitis.
I took Pentasa for over 10 years and when my creatinine levels got high I saw a nephrologist who said this damage was caused by drugs like Pentasa. My GI said this is an area of disagreement. I would like this researched so the 5-ASA drugs can be discontinued as a long term IBD treatment.
Diet Low in Red and Processed Meat Does Not Reduce Rate of Crohn’s Disease Flares
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases