I have been sat in front of my Macbook for hours, wondering what to write and how to write this post, knowing that after years of wanting to talk about my Crohn’s to a wider audience, I still don’t have the words to describe everything. Now, I’ve come to the conclusion that if I don’t write this post now I’ll probably end up never writing it at all, and that would be an even bigger shame. Alas, here I go – I have an incurable, lifelong disease. And I can’t eat chocolate.
WHAT IS CROHN’S DISEASE?
To put it simply – Crohn’s Disease makes you sh*t. A lot. Classified as a form of IBD, your body is constantly attacking and trying to reject all the healthy cells in your body (from the digestive system to the eyes, mouth, etc) by mistake. No kidding. No one knows what causes it, but it makes your intestines inflame and tries to ruin your life. I try to stay away from Google as I’ll tend to come across a bunch of stories with titles such as “It’s not classified as terminal, but…” and people talking about how their lives are over and how they’ve developed bowel cancer and perforations and other horrible things because of Crohn’s. Honestly though, so long as you can cope with all the side effects (from hair loss to rashes, constant fatigue to malnutrition) and the like, you’ll be fine. It’s frustrating and exhausting, but liveable.
MY STORY
It turns out that I’ve always had Crohn’s, but it was only diagnosed in 2014 after I went through an insane amount of testing with almost all the doctors putting it down to stress. I was on a crap ton (haha) of drugs for a while, averaging at about 16 tablets a day for a bit, eventually having to leave school because my attendance was way below even 10%. I wouldn’t be able to summon the energy to leave my bed most days, as despite the medication and diet plan I was on, my body wasn’t absorbing anything and I was coming out pretty malnourished.
MY FAMILY THOUGHT I WAS GOING TO DIE
After a while of being high on meds, I stopped falling into decline and started steadying out a bit, until another bout of tonsillitis hit and my GP told me to take Erythromycin. I had such a big reaction to the medication that before I knew it I was hospitalised again, growing more and more ill each day. I tend to overdramatise a lot of things, but my family’s concern isn’t one of them – my mother recently confessed that she thought I was going to die during the worst week.
The medication made me see things and stop feeling things, and for a while I was numb and walked about in a zombie-like state. I can’t really recall what happened during those days, but I remember wondering why I felt so disconnected from the world, dropping to a weight nearly two stone lighter than I already was.
RECOVERY
Today I’m medication-free, but that doesn’t mean that I’m cured – Crohn’s is completely incurable and will never go away. I’m constantly in a state of uncertainty, never knowing how ill I will be the next day, which is especially annoying when I have a million things to do and yet can’t find the energy to leave my university flat.
Saying all this, I know several people with Crohn’s who are so much worse than me – constantly chained to cannulas, sent to mental facilities, and even ending their own lives. By these standards, I feel both blessed and a bit like a fraud.
THE POSITIVES
Even though I’ve spent the past few paragraphs talking about how debilitating Crohn’s can be, I want to stress that it’s not something that’s stopped me from living. John F. Kennedy had it, Eisenhower had it – if they can run a country with IBD then I damn sure can balance university, this blog, and exploring the globe. I wrote this post to both educate you guys and also if I can, inspire. Because really, if I’m out here with an incurable lifelong disease living a life full of travel, adventure, and good food, then you really do have no excuse.
LOOKING BACK
The worst part about my journey with Crohn’s (ignoring, you know, having Crohn’s) was that I was constantly turned away from doctors who didn’t even believe me. It took months of debilitating illness until one doctor clocked one of my notes and finally brought me in for testing. If by writing this post even one person reads my words and goes “wow, that sure does sound a lot like my sister” or the like, then it’s been worth sharing such a deep part of myself on the internet.
BEFORE BEFORE YOU DO – WHY NOT SHARE THE LOVE AND PIN THIS POST?
Thank you so much for sharing hun, it is very informative!
xoxo
Lovely
¡¡Hola Amy!! Vaya, siento lo de tu enfermedad, no hay enfermedad nunca buena, pero la actitud si que es importante para el desarrollo de muchas enfermedades. Haces bien en intentar que tu enfermedad no paralice tu vida y seguir disfrutando de los momentos buenos. Espero que la enfermedad siga durmiendo por mucho tiempo. Muchos ánimos y besitos.
I never heard about this disease before.I was also unlucky to see a doctor once, he claimed that I invented a disease to get parents attention…
I read a few posts of others on this disease but I didn’t know what is it or that it doesn’t have a cure. Thank you for sharing your story and I hope someone out there find this helpful, it’s so important to share stories and help each other! Sending hugs! x
Yiota
I have never heard of this disease before but it’s so brave of you to share this story! I can imagine it must have been hard to remember and share those difficult memories but it’s more important to share your message, help and inspire others! Stay strong! 🙂
Andrea.
I can relate to everything your wrote, because I also have Chron disease, doctors say it is a severe case of it, whatever that means (I would say that nobody with Chron has it easy, because there is always that insecurity!)….I’ve been on serious medication (Imuran, steroids, Humira and so on) for years. I had 3 operations so far, last one (at the end of 2017, about 4 months ago) was the most serious one, the surgeons cut out a part of my small intestine but also a part of my colon and honestly my digestion is so much worse after the operation, I’m doubting it will get much better…but I had to have this restriction operation because I had fistulas and abscesses so I really had no choice- I’m not advising anyone against the operation I’m just mentioning because a lot of people think that restriction operation will automatically cure them, but it doesn’t always work like that. My advice is to always listen to doctors and trust them.
People are full of opinions and advice, and they don’t know always know what they are talking about so listening to doctors is always preferable to listening to a random person…. right now my family and friends are accusing me of being ‘negative’ when I say that I still have fever (like it is my fault!) or that I don’t feel good. Fortunately, my doctors are great, I can always talk to them.
I know there are people who have it a lot worse than me, right now my health isn’t that bad, but I do struggle with daily paints and fever….Fortunately, I’m not underweight anymore, I managed to gain weight after operation and my weight is normal.
Thank you for talking about it. Not being diagnosed is the worst thing! Maybe your post will help somebody find help…Chron is becoming increasingly common, I know tons of young people that have it…and when we are diagnosed we can at least get help…not knowing is the worst opinion and also it’s rather dangerous not knowing you have a serious disease.
I know all about humira and imuran, I know of several people on them and was advised to be put on the former myself. I hate that you’ve already had to go to surgery, especially with it actually making you worse. I do agree that doctors are much better to listen to than any old person, especially when they don’t have an understanding and miscommunicate – I recently had someone tell me I would be cured with some herbal tea! It’s also great that you’re gaining weight – people are shocked when I look at the scales and am happy to have put on a pound, for us it can be such a difficult thing to do.
Thank you for telling me about your own experience, I’ve found the more I talk about it the more I discover other people have been suffering right next to me without me noticing – talking about it is one of the best things we can do.
Stay strong with it x
I don’t have a chronic disease but I do live with chronic pain and I make self care a huge priority because of it. I didn’t know much about Crohn’s disease before reading your post but I did see something recently that is is on the rise. It sounds like it can be very debilitating if it isn’t properly diagnosed and treated. It’s good that you’ve been able to go medication-free and I wish you all the best with your ongoing management. Thank you for sharing your story!
I have a Uni friend with Crohn’s, and her boyfriend (I’ve met him a few times) also has Crohn’s. It does sound like a very destructive illness. I can say that I’ve been blessed with very good health, besides some issues with my wrists and shoulders (and a foot injury that never quite healed right). My sleeping positions are limited by in injury to my right shoulder (after three subluxations from my genetically-unstable joint), but that’s not a big deal in the grander scheme of things. I’m glad that you were able to write this post, and it has indeed served me well. I was feeling off for a variety of reasons, but now I have been inspired to dive directly into (after I finish this comment) a paper I have to write in French for tomorrow. So thanks for that. And God bless.
I’m glad I helped inspire you to feel better and write a French paper haha. Honestly though, it’s actually really uplifting to help people by talking about how crap (ehyy) Crohn’s can be, so I’m glad to have helped 🙂
Thanks for sharing this informative post, dear! It’s useful since I haven’t heard of Crohn’s disease. Hope all’s well with you. xoxo
This is so inspirational.
You indeed a great strong woman
Thanks for sharing this Information,Its very helpful. i never heard about this disease . I wish you will cure completely soon. Please do take care of yourself.
That is a strong message you send out there, I love it. People think they have it hard but look at you, managing all on your own and making the best out of every moment. Proud of you and happy that you find a way to balance coping with the illness and living life.
It’s good that you shared your story, I have intestinal problems and doctors are doing tests to see if I have Chron’s disease, I’ve already lost 18 kilos since May last year, I already did endoscopy colonoscopy but they were not conclusive now I have a TAC to do but not knowing well what I have doctors are researching other terrible diseases and I am in great stress …
My disease is also attacking the kidneys, glad that you’re well now, that’s all I want !!!
xoxox
18 kilos? That’s more than twice what I lost, but then I didn’t have a CAT scan, only an endoscopy, colonoscopy and MRI scan (scary whilst you’re in there, but that’s nothing to stress out about as it lasts less than half an hour). I hope that they discover the causes of it soon, but it sounds like you should really be on some kind of maintenance drug, even steroids, for the meanwhile. I’d definitely stay in close contact with the doctors.
I hope your body’s flare calms soon x
Thanks for sharing your story. I know a few people with Crohn’s and they are positive about it too. It was good to read this and find out more information – thank you!
Have a lovely day 🙂
Rosanna x
I’m so sorry you have to deal with this. Life can be pretty tough, anyway, without having to deal with a disease like this. But you seem like you have a good outlook and a reasonable head on your shoulders, so I hope you’re able to enjoy a full life, anyway.
Thank you for sharing your story. I am so glad to hear that you received the help that you needed. I have a friend who has Crohns and it was pretty scary listening to her story because it was undiagnosed for a while and she was very sick. I wish you all the best with your ongoing management.
Xx
Nikki
You’re so, so strong for sharing your journey. I’m really glad you’ve shared this, as my cousin has recently found out he also has Crohn’s disease; I’ll be seeing him soon and wondered how best to approach the topic – and now I know how, so thank you! I really hope you’re able to continue managing it, make sure you treat yourself kindly 🙂
My gosh… Thanks for sharing your story! It is so important for many people out there! You are a real hero.
I’ve never heard of this disease, so definitely this post was very informative to me!
I think it’s also a very important and good thing you’ve shared your journey, It could be of grat help for other people in your same situation!
Wishing you all the best in your dealing with it.
XO
S
As a doctor I know about Crohns disease. Did you know that Anastasia (the singer) has it as well? Chronic diseases are a challenge to life with, but it seems you are doing amazing. I bet your very informational post has helped many out there still without a diagnosis.
Haha I was unaware I had actual doctors in my midst. I didn’t know that, but she seems to cope with life pretty well which is inspiring in itself. I do hope so, at least to bring it to a playing field where it’s easier to communicate about.