I talk a lot about Crohn’s Disease and Ulcerative Colitis, trying to demystify the diseases that come under the umbrella of Inflammatory Bowel Disease because being diagnosed with these things can be confusing, scary and very upsetting. I try to be positive yet honest, to share my journey, the ups and downs and try and describe my life without scaring the bejesus out of any newbies.
The LAST thing I want to do with this post is to scare anyone, but what I do want to discuss are the realities of IBD. For many people, the conditions can be controlled really well with medications, with long periods of remission being achieved but around 2 in 10 people with UC and 7 in 10 people with Crohn’s will have to have some form of surgery in their lifetime. All have to deal with the medications and treatments for the diseases having side effects, some of which can potentially be life threatening.
Initially, especially if the UC is mild, medical treatment is through aminosalicylates (or 5-ASA drugs) such as mesalazine or sulphasalazine, immunosuppressant drugs, such as azathioprine or mercaptopurine may be prescribed for people with UC who continue to have frequent flare ups or ongoing symptoms. For more severe UC, treatment with steroids given intravenously may be necessary. If this does not work, you may be given another immunosuppressant, ciclosporin. Biologics such as infliximab are now also used for severe UC.
Treatment for Crohn’s also depends on which part and how much of the gut is affected. Mild inflammation may be treated with steroids or 5-ASAs such as mesalazine or sulphasalazine. Immunosuppressants such as azathioprine, mercaptopurine, or methotrexate, may be used for more persistent Crohn’s. Biologic drugs, such as infliximab or adalimumab, are available for more severe Crohn’s Disease which has not responded to the usual treatments.
This information comes from Crohns and Colitis UK, a great charity with tons of information and support. Do take a look at their website www.crohnsandcolitis.org.uk
All these medications, especially when you move from mild to moderate or severe disease have side effects and some of them are life changing, life threatening and pretty scary. The medication we take to make us better can be almost as difficult to deal with as the disease itself. Immunosuppressant drugs do exactly what they say on the tin, they suppress the immunity which leaves the patient open to all sorts of other diseases and infections.
Other meds have high risks of allergic reaction, cause weight gain, moon face, hairiness, increase your risk of cancer, can cause issues with mental health and so many other side effects. I don’t want to scare people out of taking the medication, but I do want to speak honestly in the hope that others will understand the impact of IBD.
Then there is the scopes, the procedures, the surgeries… All of which carry risks. And I haven’t even mentioned that IBD sufferers have a higher chance of getting bowel cancer.
I know this is all upsetting and scary, and I promise you that my intention isn’t to be frightening people. But there isn’t a month that goes past without seeing another member of the IBD community has passed away, the tributes from friends and family filling my Facebook and twitter feeds. I think it is important for people to realise that IBD isn’t “just” a poo disease, that what we face every day through the illness itself, the medication, the diagnosis tests and the treatments is hard work.
This isn’t about having a “bit of diarrhoea”, it can be life threatening and living with Inflammatory Bowel Disease is so tough at times. It isn’t the same as that time you had a tummy bug, you don’t understand because your aunty’s neighbour’s sister has IBS when she eats milk. IBD is serious. It is life changing and I just wish more people could understand the gravity of living with this chronic illness. There is no cure, it is a lifelong condition that can affect every single part of your life.
And the sad fact is that people die from it. From the disease itself as well as from side effects from medications and complications from treatment and surgeries.
So next time you hear someone talking about Crohn’s or Colitis, please try to understand that it is not an easy cross to bear. People with IBD truly are warriors, they have to be brave every single day to live with diseases that not only can be physically painful but can also be emotionally and mentally crippling. The embarrassment and humiliation of a “poo disease” is isolating, but the burden of self care, of learning how to manage your illness and medication independently is tiring and mentally draining. These things teamed with physical pain, incontinence and a socially difficult disease make life tough.
When you see us smiling, laughing and being ‘normal’, know that this is DESPITE dealing with all these issues. So if you know someone with IBD, please try to be understanding, ask questions, care, love and try and make life just a little easier through your own kindness.
And if you are the person with Crohns or Colitis, I am sorry if this post is a tough one to read. I’m sorry that you have to deal with all this. But don’t let it crush you, be strong, fight on and allow the illness to teach you lessons. Live harder, when you have times of remission, when your meds are working or when your surgery and treatment is helping, do the things that you want to do, follow your dreams. When times are tough and your health is suffering, be kind to yourself. Allow yourself time to heal, take the meds and follow your treatments, be strong and just keep swimming (thanks for that life lesson Finding Nemo!).
I apologise once more for such a heavy post. Please don’t let this fill you with fear, let it fill you with information and the desire to find out more. Take control of your health by finding out as much as you can about your own illness and remember that IBD doesn’t define you, it is a small part of who you are and you are an amazing, unique and wonderful human being.
You can get some great advice and support from Crohns and Colitis UK and also IA Support… Click on the images below to go to their sites.
Remember that your doctor is always the best place to get advice on your own personal circumstances and that though IBD is tough, we all still have the ability to stay positive and to make the most of the hand we are dealt.
Love Sam x