The National Ulcerative Colitis Alliance (NUCA) is a qualified 501(c)(3) tax-exempt organization.

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Origins

Origins: Addressing the Needs of Patients TODAY

We Listened to People Living with UC

Have you ever been in a room filled with people with the same chronic disease or condition and listened to their stories and experiences? We’ve had the privilege of doing just that with people living with ulcerative colitis (UC). People living with UC told us they were looking for support and education addressing their UNIQUE needs. They were also searching for a sense of community and a forum for connecting with others living with UC. The experience of talking with UC patients was so inspiring, we felt the need to start the National Ulcerative Colitis Alliance (NUCA), a non-profit group focused on the day-to-day needs of the UC community. It really wasn’t a question of if we should start NUCA, but how quickly we could do it in order to make a difference in patients’ lives.

And Now: The Backstory  

In 2007, we began developing an advisory board for a pharmaceutical company to include patients and caregivers who have hemophilia B. Our client wanted to better understand the needs of hemophilia B patients and learn how to engage with and serve their community. At the time, it seemed like it would be business as usual, but in fact, the experience of developing this advisory board and working with the patients impacted us in profound ways.

While working, we learned that the Coalition for Hemophilia B, a non-profit advocacy group, had previously identified a gap in support and the need for a group that focused solely on the unique needs of people living with hemophilia B. Other groups were focused on the bleeding disorder community at large, but hemophilia B was inevitably lost in the shuffle because it affects so few people.

Fast forward a few months and we found ourselves at the first advisory board meeting in Philadelphia. This was a pinnacle moment—carefully threading the needle between pharma, patients, caregivers, and advocacy groups. Within the first hours of this advisory board meeting, it became clear that the union of these stakeholders was powerful. We heard, loud and clear, from the patients that they value interactions with other patients above all else.

The patient advocacy group in this case became the key distributor of the educational materials being developed in the advisory boards. This allowed for a greater reach into the patient community and elevated the level of trust in the materials themselves.

Fast Forward to the Creation of NUCA
In 2016, we were tasked with creating another patient advisory board, this time for those living with UC. During the first few meetings it became clear that there was a real need for the formation of a new non-profit patient advocacy group that focuses on the unique challenges of people with UC. Existing groups are geared towards the inflammatory bowel diseases as a whole, and UC seemed to get lost in priority. Some of the groups place their focus on research, which is much needed, but leaves patients in search of education and resources.

So, we created NUCA. We assembled a board of directors composed of UC patients and experts and began the lengthy process of applying for 501(C)(3) status. On October 16, 2017, we received our approval letter from the IRS. NUCA was a go! We were going to have the opportunity to work with people touched by UC and understand how to have a positive impact on their lives.

Inspired by the People Living with Chronic Diseases
People with chronic conditions are some of the most genuine, resilient, and inspiring people we have ever met. They cope with their conditions every day, and they rely on pharmaceutical companies to create and distribute the treatments that manage their disorders. Trust between these two groups is paramount. Over our decade of working with patients and pharma, we have learned clear lessons in how these groups can work together proactively for the betterment of the community. We have seen how funding, grants, collaboration, and ultimately the successes of these relationships can have positive impacts on patients’ lives.

You can read more about NUCA’s mission, its board members, and our plans for the future here.

Thanks for reading, and we hope you find the mission of NUCA as inspiring as we have!

Rob Newland
President

Why NUCA?

The inflammatory bowel disease (IBD) community is pretty tight-knit. One could argue that’s a result of the stigma associated with Crohn’s disease, ulcerative colitis, and indeterminate colitis — it tends to bind people together because of shared experience. People with IBD find close, lifelong friends within the community because it’s difficult for anyone except another person who has IBD to fully understand what it’s like to live with these diseases.

There’s a large, vibrant IBD community to tap into, but for me there was always something missing. IBD is quite misunderstood in the public eye and ulcerative colitis often gets confused with colitis from other causes or even with irritable bowel syndrome (IBS). Educating others on the specifics of ulcerative colitis and how it is different and similar from Crohn’s disease, colitis, and IBS, often felt overwhelming.

After my j-pouch surgery (also called ileal pouch-anal anastomosis, or IPAA), I felt disconnected from the IBD community and in a state of limbo. It took time to find other people diagnosed with ulcerative colitis who also had j-pouches. We still have IBD, yet our needs are different and distinct from others in the community. It’s my opinion that we’re an underserved group within an already underserved community. I’ve spent so much time explaining j-pouches to healthcare professionals that I joke that I should have cards made up in order to save my voice.

For these reasons, I felt it was important for me to join the board of the National Ulcerative Colitis Alliance (NUCA). NUCA aims to provide education and support specifically tailored to people with ulcerative colitis. Through programs that focus on the specifics of ulcerative colitis, we can nurture and deepen the community while providing a safe space for those diagnosed with this disease to find support and guidance. What’s more, NUCA is filled with people who understand this disease because they live with it, which helps provide perspective on what is truly needed.

I’m looking forward to what NUCA can do and how it can serve people with ulcerative colitis and their families. Having such a group when I was first diagnosed would have been a game-changer for me and helped me navigate my disease journey with fewer missteps. As I go about my work on the board of NUCA, I think back to what it was like being newly diagnosed and what programs and services could have helped me to live a better life.

It’s going to be an amazing journey to grow NUCA and develop opportunities for ulcerative colitis patients to help improve their quality of life. It’s my goal to bring as many people as I can along for the ride, and I challenge you to spread the word and tell one other person affected by this disease about NUCA. Together we can reach people diagnosed with ulcerative colitis and their families and help them as they work through the challenges of living with this disease.

Amber J Tresca
Board Member

The Truth About Second Opinions

For many patients, the initial diagnosis of inflammatory bowel disease (IBD) is a long, drawn-out process. For others, the diagnosis can be quick. It took about a month and a half to get my diagnosis, and I consider that to be a short time. It wasn’t easy, however.

The first doctor I saw was my general physician. I told her I was having diarrhea and seeing blood in my stool. She didn’t seem concerned. She waved it off and told me it was probably bacterial, then sent me home with some antibiotics and a stool sample collection kit. Then she said, “Come back if things don’t get better.”

Fun times!

Things didn’t get better for me. So, two weeks later I went back to my general physician with my bloody stool sample. Not only did I feel horrible, I was treated badly by the nurses in the office. They made a horribly big deal about my stool sample right there in front of me and another patient.

When my doctor realized how much blood I was passing, she sent me to have an emergency colonoscopy the next day. I was scared. I was “too young” for that sort of thing, right? And why the heck were they taking so many blood samples? I remember writing on my Facebook page that if I had to be stuck with a needle again, I was going to scream.

And I was stuck again. I counted 9 times in 5 days. That didn’t even include the blood transfusion I had to have.

After my colonoscopy, the GI told me that I either had Crohn’s disease or ulcerative colitis, and I would have my diagnosis within 7 days. Eventually, my diagnosis was ulcerative colitis. In the meantime, I was put on prednisone to help ease the symptoms. I could tell almost immediately that I was going to hate taking prednisone. Sure, it helps knock out some symptoms quickly, but it causes a plethora of additional problems.

But things still didn’t get better for me. So I called the GI. I called her several times. I remember during one phone conversation, she told me that I would never feel “normal” again and that I could expect regular bloody stools. Looking back, she was right. I never had a normal bowel movement again. But the fact that she really didn’t seem interested in truly helping me or explaining my disease to me didn’t encourage confidence. At the end of one conversation, she actually told me that in two years’ time, I would know more about my disease than she did.

Oh, great!

My husband (then boyfriend), Dave, and his family were the most helpful throughout my diagnosis and search for answers and relief. Dave’s mother found a lot of information online about ulcerative colitis. She told me there were many treatments available and that she’d also read that surgery “cured” the disease. I would eventually come to find that surgery wasn’t really a cure at all because you can’t cure an autoimmune disease. Ulcerative colitis is, unfortunately, wired into your genes, which cannot be changed. Surgery only removes the main target of the disease.

Another thing Dave’s family found was a doctor who specialized in IBD, located just down the street from where I worked. I was hesitant to switch doctors. I wondered if I was going to have to be poked and prodded again. I had to wait two weeks to see the doctor due to the number of patients he was seeing, so I was able to get my medical records from the first GI.

Dave went with me to see the second opinion doctor. I didn’t have much hope, so my expectations were low. I was, however, pleasantly surprised. While the doctor did suggest that I opt for surgery because of the 94%-95% success rate, he was also very knowledgeable about the disease itself.

He asked if I’d done a stool sample. He told me that oftentimes when doctors order stool samples to check for a bacterial infection called Clostridium difficile, many of them only test once. He told me that he had one patient whose C. difficile test results came back negative twice before a third test came back to confirm his suspicions. After he diagnosed his patient with C. difficile infection, he was able to get the patient on the road to remission. Because of this, he always tests 3 times.

He also prescribed two other medications. He told me that when he prescribed these medications in combination with the ones I was already taking, people came back hugging him in tears and thanking him for the relief they found.

I had new hope.

I was finally diagnosed with C. difficile (which was the reason the bleeding wasn’t stopping) and after getting that under control and starting my new medications, I achieved remission from ulcerative colitis as well as the infection.

So, all this to tell you—if you are unhappy with your doctor’s answers, if the experience didn’t leave you feeling confident in the treatment or the future, or if you’re just not “clicking,” I would encourage you to get a second opinion. Better yet, get a third. You’ll probably be pleasantly surprised and thankful. I know I was.

Amber Elder
Board Member