I’ve officially had Crohn’s Disease for 6 months now and boy has it been tough. I always find that people don’t want to talk about tummy problems or just poop in general. It’s become such a taboo subject which I honestly just think is ridiculous. I want to share my story with others and if this helps at least one person then I’ll be happy.
So, what is Crohn’s Disease?
Crohn’s is a type of Inflammatory Bowel Disease or IBD for short. It affects the digestive system and causes inflammation, which can vary in size and can occur in multiple areas. Currently, there is no cure for Crohn’s but you can go into ‘remission’ for periods of time. No two people are the same when it comes to Crohn’s and everyone’s symptoms vary. The most common symptoms are;
- Weight loss
- Mouth Ulcers
- A general feeling of being unwell.
So, where did my story start?
My parents say when I was a really small child I had stomach problems but I have no memory of this. Early 2016 for me was when it all started in a bad way, prior to this I’d have the odd bad tummy day but I was just convinced it was food related. 2016 was a bad time for me, I was going to the toilet a crazy number of times every day, I was in agony constantly and I just knew in myself something wasn’t right. I hadn’t told anyone about this and decided I was going to have a chat with my GP. Straight away he referred me to a surgeon who then referred me to my amazing stomach specialist.
I was constantly nervous and didn’t want to go anywhere unless I knew where the nearest toilet was. I was miserable and couldn’t understand why I was in so much pain. It took around 9 months to get a diagnosis and lots of tests. I’m one of those annoying people where nothing shows on my blood tests. Luckily my specialist is based at a private hospital and he is very thorough. He said if I was referred to my local NHS hospital they would have just done blood tests and wouldn’t have investigated further which bloody sucks. So far I have had numerous camera investigations, a ridiculous amount of blood tests, an MRE scan and more recently a CT scan. I have been told my Crohn’s is right at the top of my bowel and surgery is an option to remove the affected part but honestly, that terrifies me.
So, how am I now?
I’m doing ok I guess. I see my specialist pretty regularly and if I ever need him in an emergency he will bring my appointment forward. I’ve been to A&E twice with stomach related problems and they have also been good. So far I’ve tried 2 medications. Budesconide, which I’m still currently taking and Azathioprine which brought on drug-induced pancreatitis so I can’t take that anymore.
I have good days and bad days. My life has changed dramatically since my diagnosis. I’m constantly tired and I’m in pain every single day but I’m used to it and I can deal with it, I basically have a hot water bottle surgically attached to me most of the time. Most recently I’ve struggled with not being able to sleep which is just horrible. I’m insecure and I constantly feel bloated and feel like I look like a whale. I’ve lost so much weight and I’m continuing to lose weight. I also feel guilty constantly.
Crohn’s Disease has made me realise I’m incredibly strong and I’m very good at dealing with pain and pretending I’m OK. This sometimes isn’t the best thing because I have a habit of letting things get to the point where I can’t take it anymore and I have a meltdown. I need to learn to listen to my body and rest when I need to!
I’m coming to terms with dumb things people say to me which honestly it does annoy me when people give me advice or how to ‘cure’ my Crohn’s. No matter how many times I say that it is s Chronic Illness and I’m going to have it for the rest of my life they still like to make their opinion known. Here’s a list of things that people have said to me so far;
- ‘You don’t look sick’ – well sorry I didn’t realise there was a definition of what a sick person looks like!
- ‘You shouldn’t be eating that – Look I’m stuck with this disease whether I like it or not, if I want the chocolate bar I’m going to have it!
- ‘Yeah I get a bad tummy, I know what it’s like’ – Honestly, a ‘bad tummy’ would be great for me, but no I deal with this constantly.
- ‘Do you really need the medicine’ – Yes, yes I do!
- ‘You should go to bed earlier’ – I go to bed before 9pm most nights and I’m still exhausted this disease literally sucks the life out of me.
- ‘I wish I had a disease which made me lose weight’ – YOU DO NOT say this to someone who has struggled massively with unwanted weight loss, it’s just not cool.
There are probably so many more things that have been said to me but the above have stuck with me.
So, why do I like talking about it?
People seem really uneasy or tell me they are sorry when I tell them I have Crohn’s. I just wish they would ask some questions so they understand what I’m going through and so it makes them more aware of the disease and how it affects me. I talk about it a lot and I want people in my life to understand. If I go in to work and I look grumpy it’s because I’m feeling unwell or I’m having a really bad Crohn’s day. I also like people to know that sometimes I just want to sit in silence and be left alone for a little while. Also, just because I’m sick it doesn’t mean I can’t do the same things as you do. I may run out of energy a lot quicker than others but I still want to be involved.
Throughout my journey I have tried to be positive, 9/10 I have a smile on my face. But please remember that people who suffer with a Chronic Illness are very good at putting on a brave face. We are a lot stronger that you think!
If any of you have Crohn’s Disease please message me, I would love to have a chat!