People with IBD share why they joined the IBD Registry
I was diagnosed with ulcerative colitis when I was 9. I had a total colectomy and ileostomy aged 11, followed by further surgery to form a pouch when I was 18. Now, I work with IBD patients every day in my job as a nutritionist.
A lovely client of mine made me aware of the IBD Registry and I’m so glad she did. I’m passionate about improving the lives of other people with IBD, so joining the Registry was a no-brainer for me. In my job I see that IBD services can vary greatly, so anything we can do to help improve them is so important. I am also interested in research into IBD, including conducting research myself, and I know how important it is to support studies that can help make things better for people with IBD in the future.
I joined the IBD Registry recently and found completing the new consent form very easy. It didn’t take much time and felt like my data was safe and secure. If you want to help others with IBD, support IBD research and help improve IBD services, I definitely recommend joining the Registry. You can really help to support improvements in IBD care nationally.
I was diagnosed with Crohn’s disease in 2004 and my journey has had many ups and downs. I joined the IBD Registry to drive research and improve understanding of IBD to help make a difference to the lives of everyone with IBD.
I encourage anyone living with IBD to join the IBD Registry today and support this valuable resource.
I have had abdominal symptoms since the age of 10 but I wasn’t diagnosed with Crohn’s disease until I was 28, after I had lost a lot of weight. I started treatment and have been on various medications ever since, plus several weeks of treatment in hospital. So now, having had 50 years of Crohn’s disease, plus 35 years with an ileostomy, I have gathered a lot of experience from the sharp end! Back in the 1970s, my gastroenterologist told me I would struggle to conceive, or carry a baby to term. With such a gloomy outlook we decided to not have a family, but I accidentally became pregnant and was in turmoil because although Crohn’s was not thought to be a hereditary condition, I was taking steroids and azathioprine. I thought a termination would be advised, but the obstetrician was much more optimistic and said they would look after me and all would be well.
I got involved in research because all those years ago I was worried about having children, and how Crohn’s or Colitis might affect them. Now with two children and five grandsons, I’m even more invested in supporting further research into new treatments and knowing exactly what causes the conditions. I haven’t had a Crohn’s flare since 1990, but I have had other health problems appearing as I get older, and these may all be connected. I’m often in contact with new patients, and I hear all kinds of stories about lengthy delays before diagnosis and urgent bowel surgery due to missed symptoms. I’d like to see progress on all these issues.
I heard about the IBD Registry through Crohn’s & Colitis UK, and I think it’s important to share our experiences – good and bad – so that in future new systems can be put in place to improve diagnosis and treatment. I feel that my personal experiences are shared by many other people, and we all want to know what causes IBD and how best to treat it. Now I am 73 and have recently moved house to live near my daughter and her boys. I’m busy with the new house and have recently joined Noom to make sure my health is as good as it can be for my age. My friends and family forget that I have a stoma, and my grandsons just know that Granny makes great cakes!
I’m Deborah and I have ulcerative colitis. I joined the IBD Registry as I wanted an opportunity to try and make a difference to others with IBD. At times my ulcerative colitis has made me extremely poorly and by being part of the IBD Registry, I hope to make research accessible to all patients – something that I didn’t think I could be a part of before.
I would definitely recommend joining the Registry – being part of their Patient Advisory Group has given me a real insight into how research makes a difference but how the most important people at the heart of this are patients. The Registry is involved in lots of exciting projects to benefit people with IBD – and I’m excited to see what the future brings.