World IBD Day

World IBD Day takes place on 19th May and is about raising awareness for those who have to live with this chronic illness. Did you know that there are currently 300,00 people with this condition in the UK and around 1.6 Million in the United States? There are over 5 million people in the world who live with IBD.

What is IBD?

IBD is a bowel disease. For some, it will only affect the large bowel (ulcerative colitis) and for others, it impacts the whole digestive tract, from mouth to anus (Crohn’s disease). There are also many that will experience joint pain, arthritis and other autoimmune diseases that will run alongside the diagnosis of IBD, but today is mainly focusing on IBD and how it affects others, as well as myself.

The symptoms of IBD

The symptoms of IBD pre-diagnosis are varied and not everyone will experience all of these, but I have listed them below:

Diarrhea
Fever & fatigue
Abdominal pain and cramping
Blood in your stool
Reduced appetite
Unintended weight loss

My experience

I was diagnosed with Crohn’s disease back in 2003 and have been living with this for nearly 20 years. I have had my ups and downs and never quite achieved full remission, but am now living with a permanent ileostomy and had my rectum removed in October. For the best part, I am mainly symptom-free, for the time being.

I experienced all the symptoms that were mentioned above and it took me nearly two years to receive a definitive diagnosis after developing a fistula, due to the activity of my disease. At diagnosis, I was relieved to finally put a name and a reason as to why I was so ill. I carried on with life, trialed many a medication to achieve remission and finally made the decision to have the affected parts removed so I would be able to live life as normally as possible with an ileostomy.

What would I tell my younger self and the newly diagnosed?

I would tell my younger self and others that this doesn’t mean you can’t live a full and active life. I would say to research your illness and be open and honest with your consultant. I would also say to try all medications before resorting to surgery. Crohn’s only impacts a small part of my life during a flare-up and I continue life with a smile on my face and a spring in my step.

What would others say to you?

I asked others what they would say to their younger selves or what they would tell a newly diagnosed IBD patient. Here is what they had to say:

Tiffany – Don’t let doctors ignore your symptoms. It isn’t all in your head. Know yourself and your body. Do not belittle the pain you’re in. Knowledge is power.

Dr Tiffany Taft – Pay as much attention to your mental health as your physical health. It’s completely reasonable to have a wide range of feelings after diagnosis. Don’t let severe worry or sadness take over. Talking to someone about things can be immensely helpful.

Nigel H – To the newly diagnosed, we each experience IBD. Don’t get hung up on what you read on Facebook forums, as they tend towards the negative. What lies ahead for you may be completely different. Once you’ve found the right treatment, it is possible to lead a normal life. Good luck!

Ostomy Mummy – Listen to your body. You know when something isn’t quite right. Don’t pressure yourself on the bad days, they will pass. Surround yourself with people that build you up. Everyone’s IBD is unique, don’t compare. Don’t be afraid to bother your doctors.

Mike & Nuisance – To my newly diagnosed self, I am genuinely at a loss as to what I would say. I know what would be coming, and it will be truly dreadful. I could say, ‘no matter *how* bad it gets, yes, you WILL live and you WILL have a full and active life.’

Michael Johnson – You will have great days and not so great days. Acknowledge the bad days and affirm that tomorrow will be better. Seek to re-frame the traumas that come with IBD. Know your body and learn all that you can. Challenge your healthcare providers. Advocate for yourself.

Dipak Patel – Find other people with your illness, as they will be your lifeline. Learn to say no. Find things that make you laugh. Check your iron levels. Don’t take your medic’s advice as gospel. Don’t be afraid to ask for what you need. Be prepared to change hospitals if required.

Gemma – Don’t be too hard on yourself. You are living with a crappy illness and if people don’t understand that you’re ill and not just ‘flaky’, maybe they aren’t the sort of people you want in your life.

Debs Gath – Listen to your body – not everyone else’s. Go easy on yourself and learn as much as you can about your health and what blood tests and scans mean. Knowledge makes you feel more in control of your health!

Eleanor Stanhope – I’d tell my earlier self to be more careful with my diet and to do more exercise. To the newly diagnosed, don’t be scared. It’s horrid, but it’s manageable and there are always solutions and support for you.

Tawnie Chipman – Be proactive. Make the effort to understand what’s going on and what could happen. Find ways to limit stress and put yourself first.

I would like to say a huge thank you to everyone that took part and responded with their stories.

Many thanks for reading,

Louise X