Things I wish knew at diagnosis with IBD

It’s a massive relief when you finally get some answers as to why you have been so Ill, but being diagnosed with IBD is a lot to take in. I know I didn’t know anything about Crohn’s disease when I got diagnosed, I hadn’t even heard of it.

There is a lot to learn about having an auto-immune disease and it can affect other things other than the digestive tract. It also affects your life in many ways.

Here are some of the things I wish I knew at diagnosis:

  • It takes a toll on your mental health – this is something I wasn’t prepared for, being in pain and having symptoms for a long time really wears on you both physically and mentally. It’s exhausting, frustrating and played havoc with my anxiety.
  • Relationships change – when your chronically ill people sometimes dissappear from your life or you simply just don’t get invited to things anymore. While it sucks, it shows you who is important in your life
  • Increased risk of deficiencies due to the bowel not absorbing nutrients – Little did I know that I would get low iron and need iron transfusions, and then a vit D deficiency. Good job we get lots of blood test with IBD to weed those deficienies out and get treatment.
  • That it can affect your joints, eyes & skin – A year after getting diagnosed with Crohn’s my joints started playing up, a trip to a rheumatoligist confirmed I had arthritis and arthralgia (non specific joint pain). Some people get skin nodules called erythema nodosum, and it can also affect your eyes with uveitis.
  • Getting the right medication for you can take time – well for me it did, took nearly 2 years for me to find meds that worked, its alot of trial and error, and there is no one size fits all, each patient with IBD have very individual experiences with meds and what worked for someone else may not work for you
  • That fatigue is a very really thing – it’s not just being tired, or lazy. It is waking up after sleeping and still feeling knackered. I noticed my energy levels are rubbish now, some days even emptying a dishwasher tires me out.
  • That you have a say in your treatment – your consultant has your best interests at heart, but if something isn’t working or you are getting bad side effects speak up and ask for something different. Don’t suffer in silence with your health, you are your biggest advocate.

I’m sure there are many more things I could list, I know that nothing can really prepare you for receiving the news that you have an incurable, lifelong disease but I think educating yourself helps immensley. I learnt some things the hard way, and some through talking to others with IBD or through research. And every day is a learning curve as something else can crop up, my crohn’s keeps me on my toes and some symptoms can be unpredictable.

What did you wish you knew when you were first diagnosed that you think could have helped or prepared you? Drop me a comment

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