What social media has taught me, a medical student, about Crohn’s, Colitis and stomas

07 April 2021

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Gwen, a third-year medical student at Cardiff University, is on GP placement for in North Wales and, like a lot of young adults, has used social media for years.

In this blog, Gwen explores the emerging role of social media in patient education, as well as a resource for her to further her learning around certain conditions and communities.

Over recent years, I have come across more and more Instagram accounts of people with Crohn’s or Colitis and those living with stomas and J-pouches.

Medical student

I have learnt many things!

I have come across posts and stories about countless topics and aspects of life with Crohn’s and Colitis. These include diagnosis, from emergency admissions to a long process of tests and investigations with a GP. I've seen how stomas can be beneficial and alleviate symptoms for many people, but for some this doesn’t solve the whole problem. People may have ongoing symptoms and have issues with the stomas or post-surgical complications. There can be problems with leaks, fistulas, blockages, wind and bloating, and skin damages. I learnt about sleep disturbances and their effect on mood and wellbeing.

One thing that social media has highlighted is that every person living with Crohn’s or Colitis is different.

No two accounts show the same experiences and no two people have the same signs, symptoms, complications, and management as one another. On placement you see the patient and their illness, and don't learn about their day-to-day life with the condition.

You don’t see their jobs and university studies, their hobbies, or their lives outside of healthcare in general. We, as healthcare professionals, often focus on the medicine and treatment but it's important to take these other things into account and appreciate that their condition isn't the only part of someone’s life. Following social media accounts about Crohn’s and Colitis, and the people who share content about their condition, has given me an appreciation of how it fits into their life as a whole and that other things keep going, like studies, jobs, families, hobbies, pets, and many other things! I believe I now appreciate more about the conditions than I ever could from textbooks and during placement with coronavirus restrictions.

By following these accounts, I have learnt about day-to-day management and the issues and problems patients may experience.

During these strange times, there have been fewer face-to-face GP appointments, although they are available if you need them, so we as medical students have had less exposure to direct patient care. Personally, I had seen one stoma before coronavirus hit and have spoken to numerous patients with a history of Crohn’s and Colitis. However, I have not yet examined patients with the signs and symptoms of these conditions, or anyone with a stoma. On Instagram, I've seen people cut and shape their bags to fit their stoma and learnt this changes nearly on a daily to weekly basis. I have an understanding of the side effects, medications and hospitalisations involved in the management of Crohn’s and Colitis but following social media accounts of those with the condition gives a much more personal feeling to it.

It's shown me how recovery from surgery can be very slow and takes weeks or months to get back to those activities you were completing before. This showed me how initially, and for some time perhaps, the stoma doesn't solve everything! Patients may experience reoccurring symptoms, recovery may be long and hard, pain will be a large part of post-operative care and scars may take months to heal.

One of the new concepts I've come across following these people is the concept of a hidden disability.

So many people have conditions and disabilities not obvious to the public and we must recognise that people and patients may need access to services, such as accessible toilets and parking spaces, without others realising. Scars, stomas and symptoms of Crohn’s or Colitis aren’t showing most of the time, and you'd never know walking the streets, shops or in a public space who has one these conditions. It's helped me realise people may need access to services, such as toilets, and that support is available for this. Radar keys, for example, are something I hadn't heard about before finding out about them on social media.

The internet can have its downfalls. However, I can truly say this is a positive from Instagram, and I've learnt and understood many things about Crohn’s, Colitis, and the bits that go around the treatment. I can learn the medications and the tests from a textbook or on placement, but this has taught me so much about living with Crohn’s or Colitis!

It's strange to think that I've learnt so much from social media.

Whilst I understand I can never truly experience the disease or have full insight; I have had small glimpses into day-to-day life and how people with these conditions live with them. To those who I follow, I can only say thank you for sharing so much of your story online. I hope I can use what I've learnt from your accounts to help patients in the future and give them the best care possible!

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