Coming to grips with my Crohn’s Disease diagnosis was one of the hardest things that I’ve ever had to do. I didn’t understand why this horrible thing had to happen to me, and I found it so difficult to cope with the hundreds of side effects that came with it. I didn’t know anyone else who had Crohn’s, and nobody around me quite knew what it was about either.
Luckily, over the past few years I have been able to both come to terms with and understand my diagnosis, and as horrible as it is, I am thankful that I am able to live a relatively normal life with it. About a year after my diagnosis, I began to join Facebook groups and support groups, and by talking to others who had lived with the disease for a lot longer than I had, I was able to learn about the best ways to manage it, what sort of diets to give a go, and how to try to live a normal life. Since then, I have written endless articles about Crohn’s Disease and how I am able to travel with it, and by sharing my stories I hope that I am able to help others that suffer with similar ailments.
Recently, I wrote a post in a Crohn’s Disease support group asking everyone what they wish they’d known when they were first diagnosed, which received an incredible amount of responses. From that, I narrowed down the top 15 answers to combine in this blog post. Why 15, I hear you ask? Because 15 is the age that I was diagnosed.
That everybody’s different and something that may work for someone else may not work for me.
– Rachel Macdonald
Employment law, i.e. what are my rights, the importance of vitamins and minerals (check iron, vit b12+folate, vit D), mental health support.
– Bob Hope
Make the most of the time you are, relatively, symptom free. I’ve lost too many years to this condition. I wish as a younger man I’d known what could happen in the future.
– David Buckle
I wish I had listened to my body more & not rushed back to work/‘normal’ life. I feel I wish I had been given this advice.
– Eilidh Whitfield
Don’t be afraid to ask questions – I find it helpful to have a written summary of the history of the disease (after 30+ years it’s hard to condense!); how things have been since last appointment and most importantly any questions I have.
– Gill Renouf
The pyramid of treatment – prednisone, azathioprine, 6mp, biologics etc. I had no idea what any of them were or what the side effects might be.
– Emily Bispham
I wish I’d pushed more for answers and stuck to my guns about my symptoms instead of accepting what I’m told rather than what I feel.
– Janine Akerman
I wish it had been fully explained to me that my whole lifestyle would need to be altered to ensure I could stay healthy and learn how to balance the needs of what my body now needed from me.
– Charley Drinkwater
Don’t accept medical advice from a physician who tells you it’s all in your head and thinks they know your body better than you do. Also, modesty goes out the door during colonoscopies.
– Daniel J MacDonald
That you have a choice you don’t have to do what the medical people say, your body you decide (but research the options). I was pushed about, hitting breaking point before they listened.
– Jo Dinsdale
Don’t expect the first thing you try to work, and don’t give up hope when it doesn’t! I was put on Azathioprine after a round of steroids and I had an allergic reaction to them and was put back on steroids for another few months. I didn’t realise there were other options, so I thought I was going to struggle forever. Now I’m on Humira and it works fab for me.
– Ella Gibbs
That just because you have a diagnosed disease, life doesn’t have to be boring and your dreams diminished. If anything, it gives you a boost to take life and run with it 100%, to make the most of it.
– Sarah Wingrove
Talk about it, don’t hide it, speak out loud about what you are going through. Don’t feel ashamed – it’s not your fault. You are stronger than you think you are! Just keep fighting and you win the war.
– Agata Thompson
I wish I knew about all the different diets such as paleo, AIP Paleo, gaps, specific carbohydrate diet etc…. before I had most of my large colon removed.
– Paul Bryan
Tell family & friends, be open about your health with them and send them info so they can better understand what you’re going through.
– Sarah Relf
I hope that this post has been able to offer some help to those with Crohn’s Disease, those who have a loved one with an autoimmune disease, and even those that knew nothing about it before this post – I sure wish that I’d had something like this when I was first diagnosed!
If you have any other tips or questions, please let me know in the comments below!
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Wow, I never knew any of this! I had heard of Crohn’s Disease, but I didn’t know what it was or how it affected someone. It’s so good that you’ve been able to compile all of this advice – I know that many people will benefit from it!
Thank you for sharing your thoughts about Crohn’s Disease. It sounds like a horrendous disease and I am so sorry you have had to go through it, but you are strong for being able to talk about it. I wish you well.
I am loving all these tips, advice and guidance! How helpful for someone just diagnosed or feeling a little lost and unsure. I am a great believer that a diet can help most things in life, and I am so glad that you are able to travel and do the things you love most!
Thanks for sharing your journey! My aunt had this disease and recovered. Sending prayers of healing.
I am so glad that your aunt is in remission – that’s the ultimate goal for someone with Crohn’s Disease! However, it’s not something that a person can ‘recover’ from entirely, as it’s incurable and as thus, is always part of us in one way or another.
Thank you for sharing this because I know it will help so many others that are going through the same thing. When I started sharing about my cancer journey, I learned that I wasn’t alone and it was helpful to know that there are others who get it. Take care!
I am glad that you have been able to grow so much throughout all of this, and can now educate others about it.
Such an important blog article for all of the persons who will be diagnosed of this disease.
Thanks for sharing.
And I’m glad to hear you can find theses kind of groups on facebook. It’s good to have a support with people facing the same things as you.
Thanks so much for sharing. I know someone with Crohn’s, so it can definitely be rough and it affects pretty much all aspects of your life. I have IBS, so I know how awkward these things can be or how it’s tough to tell people what you’re feeling or what you need.
Hello
I just feel like saying: Karma is a bitch !!!
I hope you return to your trips as soon as possible !!
xoxo
I know a few people that have been diagnosed with Crohns Disease and it’s definitely something you have to be mindful of all the time. I am glad that you are coping and have found support groups. Thank you for sharing this journey.
So many great advices! Fantastic you shared them here, I’m sure there are millions of people affected and would find this very helpful.
I know this disease very well as I worked for the pharma company that produces Remicade, the monoclonal antibody against crohn’s disease. It is a terrible one, I know.
I have only known two people with Crohns and also a couple of bloggers as well. Thanks for sharing this post. Wish you the best. Stay encouraged. x
I have Crohns I follow by what I personally needed. I took the steroids did not like how I felt so one day I follow the nutritionist expert what to eat and incorporating healthy elements. Everything they said I cannot eat ever I eat now lettuce 🥬 Spinach and so on. I noticed I was getting the grip of this and knew when I get a episode take prednisone not when I did not have an episode, it work for me I also have strong faith prayers always help me not to lived like the disease control me I control Crohns, I felt like myself until now with this pandemic is a reminder how vulnerable I could be. Great info here everyone should do what works for them.
I heard of this disease but I really didn’t know how it was in concrete.
And it’s worst of what I’ve been imagined…..You have to pay attention all the time and be very aware of yourself: I can’t imagine how stressful it could be.
Anyway I’m happy to hear that are support groups to help people whit this disease to deal better with it, guess that this post, other than very informative, could be very useful for someone in your situation!
I know I think I have mentioned before I have something similar called SIBO. It can be isolating. I am glad you reached out for support, it can very helpful.
I have a friend who suffers from Crohn’s Disease and she had a difficult time when she was initially diagnosed as well. It is tough to live with but like you she has found a way and takes very good care of herself. Having a strong support system in place definitely makes a huge difference. Thanks for sharing your story Amy <3
Thank you for sharing this! Although I don’t have Crohn’s disease, I can see how helpful this could be to those who do, or even just people in general! I’m glad you found a support group, I think it’s key!
I’ve only heard of this disease recently and I can only say that my heart goes out to you. My husband has a mild form of IBS and sometimes it’s been tricky for him to travel. I can only imagine how you’ve had to travel with Chrons. Glad you’re preservering!
SUCH an amazing post for people recently diagnosed with Crohn’s! Great work, lady!