Posted on 20 Jul 2021
When you join the My IBD Care app, you don’t just get a great free tool for helping you manage your IBD, but you also become part of a community of people like you who are learning to manage their condition. You’ll have access to regular community events like Q&As with specialist clinicians and community meetups. This is all a part of our Ampersand Health Hub.
We are incredibly lucky to have some of our community members who attended these events share their experiences with us. Here are their stories.
David’s Health Hub Experience
I have been an active volunteer of CCUK since 1983 (back when it was then known as NACC) after being diagnosed with Crohn’s Disease in 1982. I am always looking into new information about IBD and when the My IBD Care app came along, I downloaded it and through it I found Ampersand Health and signed up to receive more info.
The Ask-a-Clinician event offers something for people in any stage of IBD. I find that I learn something different and new in each event. I think others also find that they learn something they may not have come across in their normal IBD clinics.
The IBD Community Meetups give people a chance to chat with others in the same situation as themselves, and to speak openly without embarrassment in a safe space. Since we haven’t been able to meet with friends and others face-to-face in the past year, these meetups are a great way to speak to others like you. Being a CCUK volunteer, I’m involved in their meetings sometimes as a participant (and sometimes as a host or co-host). Myself, and Emma, a practicing nurse and fellow volunteer, visit hospitals around the Greater Manchester area to spread awareness. When people are diagnosed with Crohn’s or Colitis, they are always happy to receive as much useful information as possible. These meetups and meetings through companies such as Ampersand Health can be invaluable to them.
Claire’s Health Hub Experience
I attended the Ask-a-Clinician online event about dealing with flare ups and found it very useful. My situation was a bit different from the others attending as I have an Ileo-anal pouch and not UC or Crohn’s. It was interesting to see how treatment of IBD has changed since I was first diagnosed in 1995. I’m so pleased to see that clinicians are discussing the impact of IBD on mental health. From my past experience, this hasn’t happened much. This event showed me that clinicians are now taking a more holistic approach to dealing with the disease.
The Community Meetups are also very helpful events. IBD can be a really difficult subject to discuss with family and friends, and you can often feel very isolated and alone. It was very humbling to hear other people’s experiences living with IBD, their advice and suggestions. Attending these events will make you realise you are not alone. There is a lot of advice and support out there and everyone is happy and keen to help one another.
Having these types of events organised by Ampersand Health is wonderful, because they are accessible to all and happen regularly. Some questions that you would never think to ask your IBD team are answered and all from the comfort of your home.
IBD can make us feel powerless – but these events are empowering.
The Community Meetups give people a chance to chat with others in the same situation as themselves, and to speak openly without embarrassment in a safe space.
Want to join the Ampersand Health Hub community?
When you download and sign up to the My IBD Care app (it’s free!) you’ll have access to the Ask-a-Clinician events and Community Meetups David and Claire have found so helpful. You’ll also get advice, resources, courses and tools to help you self-manage your IBD and track your symptoms so you can improve your treatment plan.