I Have UC - Ulcerative Colitis Support Group

05/19/2024

Mew Accutane related story and question:

https://www.ihaveuc.com/uc-and-accutane-question/

Stories and information about all topics of living with ulcerative colitis ranging from medications to diet iseas and working with your gastro doctor and more.

02/06/2024

Nice to hear so much focus on the patient today.

A nice presentation from a US FDA member right now on the Benefit Risk equation of medications, and future guidance from the FDA.

02/02/2024

Hi UC'ers,
I hope you are all enjoying the start to your February!
Also, there is a brand new opportunity for UC'ers who experience flare ups from time to time, it is a study going on, all people in the United States are eligible to participate, and it might be interesting for you. They are offering some pretty incredible participation based compensation ($250 amazon card for example if you qualify for the study). And it is all about science and your immune system's response to when you flare.
The organization organizing this is called ImYoo. They are based in San Francisco. I spoke with them a few days ago and already quite a few UC'ers are participating. Details are here:

If you have inflammatory bowel disease, including Crohn's or colitis, you may be eligible for ImYoo's at-home research study.

12/11/2023

Pretty interesting research here UCers:

Mucosal healing (MH) in inflammatory bowel diseases (IBD) is an important landmark for clinical decision making. Artificial intelligence systems (AI) …

12/07/2023

Here is an update and another request from Frankie (the PhD candidate who is working in a pretty interesting IBD project)

Stories and information about all topics of living with ulcerative colitis ranging from medications to diet iseas and working with your gastro doctor and more.

07/28/2023

Who can help out Ricardo in Cali??

“Hello Adam,

Thank you for the great resource. Have followed you for over a decade now.

Just wanted to see if there is a way to ask the members or if you have any info on how to get canasa at a reasonable price. I am in California and have been having mild flares with some inflammation and they want me to go on it for 3 months but the cost per refill is $500!

Please let me know if there is a way for me to ask your group or if you have any info.

Thank you!”

05/27/2023

https://www.nature.com/articles/d41586-023-01700-y

This was sent earlier today by a family member. Those interested in stress and IBd might enjoy the reading as well.

Best to all of you, Adam

Signals originating in the brain make their way to gut nerve cells, leading to a release of inflammatory chemicals.

05/14/2023

Just posted a new story from a recently diagnosed UC’er:

https://www.ihaveuc.com/my-circus/

Interested in communicating with other Ulcerative Colitis people who feel there must be a better way.

04/20/2023

https://www.youtube.com/live/DWN8neEmS84?feature=share

Frankie is involved with a project, one focused on IBD patients.

Here are some details:

This research project will present a unique comparative analysis of middle-class White and African American inflammatory bowel disease (IBD) patients. The primary objective of this study is to document and compare the characteristics and experiences of middle-class African American IBD patients to the characteristics and experiences of middle-class White IBD patients. In this project, I aim to better understand the underlying processes of trust, diagnosis, and participation in clinical trials. Moreover, the purpose of this research is to discern patterns of similarity and difference across middle-class White and Black IBD patients and to highlight the underlying processes that produced them.

To take part in the project,

please email Frankie: fafiguer@buffalo.edu

Francisco A. Figueroa III
Ph.D. Candidate
University at Buffalo
Department of Sociology
fafiguer@buffalo.edu

Frankie is involved with a project, one focused on IBD patients. Here are some details:This research project will present a unique comparative analysis of mi...

03/13/2023

New SCD diet related story from Cheryl:

I started SCD January 2023 and since then my symptoms have been very mild. I had a 5 week stretch with no issues, but have just had a bad week due to trying pantoprazole sod dr 40 mg.

03/04/2023

https://www-thebrighterside-news.cdn.ampproject.org/c/s/www.thebrighterside.news/amp/self-propelled-autonomous-nanorobots-precisely-deliver-medication-to-treat-inflammation

Yeast micro/nanorobots utilize twin-engine to self-propel in gastrointestinal intraluminal and extraluminal environments. (CREDIT: SIAT)

03/01/2023

Have you or a loved one been diagnosed with Ulcerative Colitis? A longtime affiliate partner of the website Pillar Patient Advocates is seeking 27 adults who have moderate or severe UC who are on their 1st biologic drug or have never used a biologic before to participate in a 30-minute online board.

In appreciation, participants are paid $50 for your input and time.

If interested, please complete our registration to be contacted at
https://www.research.net/r/ucinfppa
or email Christine at Cobermaier@PillarAdvocates.com. Be sure to include your phone number and area code so a Patient Liaison can reach out to you. We will go through a few screening questions prior to scheduling your participation. This study is for US Residents only.

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