The advice I’d give to someone newly diagnosed with IBD | by Summer
Being told you have been diagnosed with IBD can bring a whole host of emotions from relief, apprehension and feeling scared. From experience, I can say all are valid and each day you probably feel quite different. So I wanted to talk you through my own experience of being diagnosed with ulcerative colitis (UC) and share some top tips to help you manage your new diagnosis.
Coming to terms with an IBD diagnosis
When I first got diagnosed I was feeling overwhelmed, relieved, anxious and like the whole situation was just really unfair. Learning you have to live with a chronic illness for the rest of your life is a lot to take in. I think this fed into my initial narrative of why me, what did I do to deserve this? Then I felt scared, it was a whole world of unknown territory and quite frankly the prospect
was really quite frightening.
So far it’s all sounding quite doom and gloom isn’t it? But perspectives can change. I soon realised that I had a choice to make. I could continue to fuel the negative thoughts or I could accept it and try to move on with my life. One thing that helped me the most was actually researching IBD, looking into what it was and the treatments available. I think all the emotions I was feeling was the fear of the unknown. So once I slowly started to piece the different parts together and understand more about this new condition I haven’t even heard of until now, I started to feel a lot more confident in the diagnosis and relieved to finally have some answers.
How to manage IBD symptoms
Now while I am no doctor, I wanted to share how I managed my symptoms in the early days. First up, write a symptom diary – I just used the notes app on my phone. I would note down how many times a day I would go to the toilet, if there was blood when I went, pains/cramps and any sickness. This helped when I had my first few gastroenterologist appointments as it can be hard to
remember all these details. It also helped me keep track to see if my symptoms were improving or not.
Secondly, I would suggest keeping a record either paper or online of all your doctors letters. I would then refer back to these and check I understood everything that was discussed. You can also use it as a point of reference if you need to know a list of all your current medication for example.
Lastly, make sure you tell a medical professional when things don’t feel right. You know your body better than anyone else and if your symptoms are persisting, getting worse or just not getting better then tell someone. I found in the early days after my diagnosis I thought having IBD meant I had to be in pain and have persistent systems but actually you shouldn’t have to live this way. So find out who your point of contact is, is it your IBD nurse, GP or gastroenterologist?
IBD support networks
This one is so so so important as I know first hand how lonely it can be living with IBD. Let’s start with friends and family – while they may not be able to understand what you are going through, they can be there to comfort and support you. I feel it’s only fair to shout out to my mum here, even though I was 19 when I got diagnosed, she came to every appointment with me, helped research treatment options, advocated for me when I couldn’t and even quite literally carried me into hospital one time when I was too poorly to even walk. So if you have these people in your life then make sure you lean on them, as I promise it will make it feel a little bit easier.
Now my next point, if you can, then find someone who has IBD, as nothing quite beats speaking to someone who understands. There are plenty of ways to do this if no one in your immediate circle has IBD. My hospital ran support groups of IBD/ostomy patients and Crohn’s & Colitis UK also has great local groups who run regular events to meet people and learn, and lastly look
online. There are so many pages out there sharing about life with IBD. My personal favourite Instagram accounts are: @natalie_amber, @ibdlottie, @theibddietitian – as well as all my fellow ambassadors accounts! I will just note that not everything you see online is useful or helpful. So take the good but if something isn’t helping you then you don’t have to keep consuming that content.
How to maintain a positive outlook
Someone once told me that the hardest things are given to the strongest people because only they can handle it, and this really stuck with me. When I think of all that I have had to deal with since being diagnosed with IBD, even if in the moment it didn’t feel like it, I have been strong and resilient and you will be too. So just remember even in the really tough days, there is light at the end of the tunnel and you will get there.
Final thoughts
If there is one thing I’d want every newly diagnosed person to know, it’s this, be kind to yourself. There will be extremely difficult days but there will also be positive ones. Take one step at a time, lean on your family and friends and remember you are much stronger than you realise. Having IBD will be a challenge but with the right treatment and care you can live a very happy and fulfilled life.
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