I was diagnosed with Crohn’s Disease when I was 15, and boy, has it been one helluva journey.
Thankfully, since then I have come to terms with my diagnosis and actually been able to understand what it is and what it means, so that now, I can live a relatively normal life with it. It took me about a year after my diagnosis to start joining Crohn’s and Colitis support groups, but when I did, I was able to learn so much about what Crohn’s Disease is and what having it would mean for me.
Not too long ago, I asked people in my Crohn’s Disease group for advice they wish they’d had when they were first diagnosed – and they were all so incredibly helpful. From that, I’ve compiled the second segment to Things I Wish I’d Known When I Was Diagnosed – you can read the first segment here!
I wish I’d known it wasn’t all in my head because “being less stressed” doesn’t cure it!
– Lauren Mitchell
I wish I’d listened to my body more as a 16/ 17 year old and got help sooner. I also wish I knew about support groups/ accounts sooner. They are such an amazing help and everyone’s encouragement and positivity genuinely warms my heart. I love the IBD community.
– Nancy Tysoe
Be careful where you seek out information on the internet – NHS and CCUK are the best.
– Gill Renouf
Don’t be afraid of your diagnoses. It might be scary to begin with. However, there’s so much treatment out there and you can still live a normal life!
– Charlie Stokes
Lock the fridge door and throw away the key if having to take steroids…
– Karen Harvey
If you think there’s something wrong, usually there is. Don’t take “it’s just IBS you’re too young to be ill” as an answer.
– Rachel Anne
There’s no “best drug”, there’s only drugs which work for you right now.
– Paul Westlake
I wish I’d gone on a low inflammation diet earlier. You’ll learn which foods you can have so that when you have a flare you can just stick to those.
– Ian Wheatley
We definitely don’t ask our consultants enough questions, we just accept what they tell us. ALWAYS ASK NEVER BE AFRAID.
– Laluli Jo
You are more than your disease! And however bad things are, nothing lasts forever: you will not feel pain forever, you will not feel nauseous forever, you will not spend the rest of your life ruled by bathrooms!
– Beccy Schieren
I hope that this post has been helpful if you have Crohn’s Disease, have a loved one with an autoimmune disease, or even know nothing about the whole shebang and simply stumbled upon this post by accident.
If you have any other tips or questions, please let me know in the comments below!
BUT BEFORE YOU DO – WHY NOT SHARE THE LOVE AND PIN THIS POST?
I have relatives with this disease so I learned about it through them.
The biggest difference between when I grew up and now is the presence and availability of information and groups centered on any subject, including this one. Fifty years ago folks suffering from disease couldn’t find support and advice. I’m happy you were able to connect with people who could offer that.
it’s great you could share your and your friends advise with others, and that you are finding ways to manage everything now after your diagnosis! 🙂
Hope that you had a great weekend 🙂 We made the most of the warm sunny days after a rainy week 🙂
I worked for a Pharma industry that has one of the most powerful drugs for CD and UC however it is true that there is no solid cure for this disease:-(
Hello Amy,
Thank you so much for raising awareness about an issue that can affect many people around the world. I loved the format and the way you talked about, through testimonies and short quotes that are really easy to read and really easy to share!
I really admire the way you talk about this illness and keep traveling around the globe 🙂
Pablo
Thank you for sharing.
Thank your for sharing that ❤
Lovely for spreading the word and getting others informed about this diagnoses.
Hope you’re doing well!
Great post. It’s a different illness for everyone so it’s wonderful there are support groups. I love that you shared what your friends have said about what they wished they knew about Chron’s illness.
I don ‘t personally have any experience of Crohn’s Disease but this advice must be super helpful for anyone with a recent diagnosis. It is such a minefield of medical information out there and it can be so intimidating when you are unwell and trying to navigate it all. These tips are a great reminder to take it all one step at a time to find a solution that works for you. Thanks for sharing this!
I honestly don’t know much about Crohns disease, and have learned so much from your blog. I think this list of what you and your community wish you’d known initially is so supportive and helpful. Thanks for putting it together and for the work that you do!
This is a fantastic post! I had a friend who had Crohn’s in graduate school and she was trying to learn more. I’m glad there is a lot of support available out there.
Thank you for sharing these important tips. I love that you got quotes from people who have this disease. So glad you found support and help. Others will benefit from your sharing!
I have no experience of Chrons Disease but even so it was really interesting to read all the various comments from the people in the support group.
Thank you for sharing this. It’s good to create awareness for this and it’s a great post for others who have crohn❤️
This is so useful! Thank you for posting. Even though I don’t have anything like this, it is always good to understand the struggles of those who do.
I think that Charlie is right in that you shouldn’t be afraid of your diagnosis. Like all diagnoses, it can only be okay/ get better if you’re not scared of it.
God, doctors suck! I’ve heard from so many people how they misdiagnose, and how they would have been better off had they just been able to diagnose themselves. Well done to everyone who has ever gotten a diagnosis – I know the fight you have gone through!
Low inflammation diets are the BEST! It’s the only way I can manage my UC.
I was so terrified when I was first diagnosed with Crohn’s and a post like this would have made me feel so much better. I hope that it can reach as many people as possible, because I think it’s important to hear and understand the disease from other people who have it. What a wonderful community!
Wow, it’s incredible that you spoke out about this. So brave!