Hi! I’m Rhiya and I'm a Sikh girl in my 20's living with Crohn’s Disease. I was diagnosed at the age of 15 while I was in my final year of High School about to sit my GCSE’s.
After my first flare up in 2016, I was so confused and lost about Crohn's. I’ve always been an independent girl, so being at such a low for the first time was hard. I was given a feeding tube and high dose steroids to get me back on my feet which eventually helped. I was also on Azathioprine and Mesalamine for 2 years with no flares. I was back to myself.
I moved away to university, back to my independent self - but lost track of my disease and began to ignore it. If I'm being completely honest, I don't feel university for me was the brightest idea I've had.
I completely lost track of my disease, and not having any major flares made me sideline it massively. As a result, I do think I’ve now suffered prior to graduating due to the lack of love I gave myself. On the contrary, I loved my time at university and I wouldn’t have changed it for the world.
Your disease is going to do what it wants, why shouldn’t you do the same!? I don’t regret living in the moment, but I do wish I had stayed in contact with my Doctor and kept on track of my medications at the time.
Rhiya
Blog Co-Author and Person Living with Crohn's Disease
I feel over the years people have become more aware of Crohn’s Disease itself, but I’ve learnt that the same people can just boil it down to belly ache and bowel movements! No two people with Crohn’s have the same symptoms, which understandably makes it harder to grasp. Living with Crohn’s is always a bumpy ride with every day presenting a different vibe. Some days I forget I have it all together, but I definitely pay for this on the days I remember.
As a Sikh girl who comes from a Punjabi family, Crohn's is a whirlwind. Explaining my disease to an elder generation who believe home remedies can fix anything is a long shot. Culturally, Punjabis are crazy. From small house gatherings to week long wedding events, it’s hard to manage my disease and my lifestyle.
Thankfully, everyone around me understands my situation as I’ve explained to people clearly and laid all my cards on the table. The days I know I can run around like a headless chicken, I do! But likewise on the times I need rest I make sure to take it. Nothing is more important than your health.
I’ve been in remission now for nearly 12 months and I’m on a foreseeable course of Adalimumab and Azathioprine which are both going well. I also now have 2 Seton stitches which have worked wonders for me! Amongst the anxieties I face with my hospital visits and medications, I’m happy to have a good relationship with my IBD Nurse and the Crohn's and Colitis UK team.
Having this disease is hard, but you have to stand tall against it. It’s going to try and fight you, make you crumble, and it will - but you will always be able to fight back 10x stronger. Your disease doesn’t own you, and the sooner you learn to understand it and take control, the easier it becomes to live with.
I’m open about my disease - it can be horrible and raw, but I’ve learnt to speak about it openly and I find no embarrassment in talking about things others might shy away from. As time has gone on, I’ve finally grown back into myself. I just had to listen to my body and give it the time and attention it needed to heal and recover, both mentally and physically.
It's not been an easy journey, but I've come to terms with my condition and learnt to live with it. If I was going to pass on any advice to someone who's in a similar situation to me, it would be:
- Do not live in regret. Don’t blame yourself for the position you’re in. There’s nothing you could do to stop a flare up from happening, just try to keep in routine with check ups, medication and yourself!
- Listen to your body! Symptoms can begin in the smallest of ways. If you notice an ulcer or you feel more fatigued than usual don’t ignore it. The sooner things are nipped in the bud the easier - go and get that blood test!
- Be kind to yourself always. Take each day as it comes & don’t be so hard on yourself. Experiencing first hand being bed ridden and house bound has made me appreciate the smaller things in life & I’m forever grateful to be able to live through it.
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