Since being admitted into hospital for a week in December and diagnosed I’ve been researching Crohn’s disease. I’ve been looking into what it is, what symptoms you may get and really just what to expect. Firstly it’s one of those expect the unexpected, everybody with Crohn’s is different and unlike say with a cold, it’s not black and white what symptoms people get, the severity of the disease or how it will be treated and managed.
Crohn’s disease falls under the umbrella of an inflammatory bowel disease (IBD). Not to be confused with irritable bowel syndrome (IBS) Crohn’s disease is an autoimmune disease where your immune system attacks anywhere in your digestive tract from your mouth to your rectum. Essentially the white blood cells in your body that normally fight infections and bacteria attack your mouth, small bowel, colon, stomach or anywhere else in your GI system which causes ulcerations, bleeding and in severe cases bowel perforations. The difference between IBS and IBD is that with IBS it is rare that it causes damage like IBD and is more symptomatic rather than a disease which can progressively damage your body. They do share lots of similarities though with symptoms and with dietary and more holistic treatments that can help.
Crohn’s disease is a chronic condition which means there is no cure, instead it’s treated and managed with most sufferers having periods of active disease also known as flare ups and periods of remission where they can be almost completely symptom free. Some people do have consistent symptoms of varying severities.
The symptoms of Crohn’s vary dramatically from person to person but the main ones are diarrhoea, nausea, bleeding and blood in stools, fatigue, weight loss, joint pain and abdominal pain. I have had all of these at some point in the last 12 months with them main ones for me being nausea, fatigue and excruciating abdominal pain. None of the symptoms are pleasant and when you get a combination of all of them it can lead to hospitalisation. With this disease your intestines become inflamed which means they do not absorb nutrients properly which makes it difficult sometimes without hospitalisation to stop the flare up getting worse and control the symptoms.
The severity of the disease varies greatly from person to person with some experiencing multiple flare ups a year and some experiencing no issues for years. One great blogger and YouTuber I have found is Hannah Witton. She did not have a flare up for 10 years and then ended up having a very severe one which lead to her having emergency surgery to remove her colon and an ileostomy bag placed which now does the job her colon would. Definitely go and check her out as she is very inspirational and has helped me feel so much better mentally since my diagnosis.
Not everybody has surgery for Crohn’s disease but it is estimated that up to 75% of people with this condition will have surgery as treatment in their lifetime. Other treatments that people have to manage the condition are steroids, anti inflammatory medications, immunosuppressants and biologic drugs. I myself am currently waiting to go onto an immunosuppressant so will touch on these more in another post once I have more first hand experience and if I do end up on any of the others will discuss that then. Along with the treatments people with Crohn’s have regular blood tests to monitor for an inflammatory markers, check that the treatments are working as they should and look for any nutrient deficiency’s. We also have regular colonoscopies and sometimes external scans such as CT scans, X-rays and MRI scans to check where any active disease is present in the digestive tract.
Since my diagnosis I have found all of this information through the Crohn’s and Colitis UK website, the American Crohn’s foundation and on several other charity organisations and NHS sources. I have found these so helpful in explaining my disease to me, which really gives me that feeling of control over my own health. I recommend anyone who’s been newly diagnosed to do some research so that when you have your consultant appointment or your feeling like your symptoms aren’t where they should be your prepared to get what you need from the professionals who are there to help you.
I want to add a disclaimer that I am not a medical professional and the above is not to be taken as medical advice, please do your own research and consult with your medical team around anything to do with your condition. I do hope that in sharing what I have learnt so far I’ve encouraged you to look into your condition or if you don’t have Crohn’s but know someone who does have some more knowledge on what they may be going through.