Laura, Sara and Andrea are friends and have all experienced life with IBD for over 10 years. Here is a message from them to those who don’t have IBD and would like to understand more about what it is like to live with the disease day in and day out.
Written By Laura, Sara and Andrea
There is a common misconception that IBD is the same as IBS, although IBD patients can also have IBS they are certainly not the same. IBS is a functional syndrome that can be painful and disrupt life but does not cause damage to the bowel. IBD on the other hand is an inflammatory disease in which the immune system attacks healthy cells in the bowel that can cause severe damage, even to the point of requiring surgery.
Surgery is not a cure however, though it can help relieve symptoms. At this time, there is no cure for IBD.
You may have heard of a stoma, which is an opening on your abdomen that is connected to your digestive or urinary system so that waste can leave your body, rather than pass through the ‘regular’ places.
There is a lot of stigma surrounding stomas. Colostomy or Ileostomy stomas are life changing BUT life saving! Wearing a stoma bag can have a massive, positive impact on life and allows those with the illness to complete activities they never used to be well enough to do so.
“The months leading up to surgery were very difficult. I didn’t dare to leave the house without knowing I would be in close proximity to a toilet. Since my Ileostomy surgery I can now go out in confidence, travel further distances, take public transport, swim and get to work without worrying where the toilet is constantly. I am also too aware of the challenges living with a stoma can cause which can really knock one’s confidence and self-esteem. It’s really key for the population to become ‘Stoma Aware’ and be less judgemental and hurtful when sharing their views and comments. Stomas give many people hope and a better quality of life. Life is anything but over!” – Quote by Andrea
Day-to-day life with IBD at times feels like a mechanism of chaos within your body and mind. You can’t always predict what feeling, food or action will contribute to your symptoms. However, it is finding your own sense of control in understanding your own fluctuations and needs that helps you. IBD forces us to know ourselves in body and mind in a way that many will never need to, but in doing this we find our ability to manage our condition. It is different for every individual hence the need to understand our individual mechanisms.
IBD doesn’t just affect the digestive system. It’s not just a ‘toilet disease’. It is a fluctuating disease that can also cause severe fatigue, skin, eye and joint problems as well as issues coping with medication side effects. If you know someone with IBD, make sure you don’t just tell them to go to bed early if they’re tired or question why they were ok and could function yesterday but can’t today.
IBD is more common than you think, and often, it is easy to misdiagnose.
No one’s experience of IBD is the same. Although people may share the same disease, their experience of it is individual and unique to them.
Crohn’s and Colitis Awareness Week is an opportunity to join thousands of others with IBD to unite, be heard and raise the vital awareness that is needed to reduce stigma and myths around the condition, so that people with IBD can be better supported through their journey.