Since starting GUT INSTINCT, I’ve spoken to loads of amazing people who have shared with me similar experiences or stories and it’s been a fantastic opportunity for me to learn and connect with so many people both in this country and across the world. Recently though, a conversation I had stood out to me as particularly important and something I felt compelled to share with you all – if there is a chance for me to help spread the word or raise awareness about an issue, especially something as serious as Pulmonary Embolisms links with IBD, then I will do it.
This week on Instagram, I connected with a beautiful girl called Bexi, who shared with me her story that stood out significantly from others. I wasn’t even sure what a Pulmonary Embolism was, yet alone how you were even meant to pronounce it, but having read and discussed it through with Bexi, I knew that what she went through was serious and lacked awareness, which is why I’m now using GUT INSTINCT to allow other people to ‘guest post’ and speak out about their experiences.
Hi! Welcome to awkward introduction of 26 year old Swedish girl with Crohn’s Disease. My name is Rebecca.
I found Gut Instinct trough YouTube and it was a true hallelujah moment – as we all know, there is a huge shortage of brave people talking about and spreading the ups and downs about our shit. Pun intended.
I got diagnosed with Crohn’s early 2015 after months of pain and horrible toilet visits. I’ve never met someone with IBD and had no idea what this meant. I’m not going to lie, it’s been hard. I’ve been hospitalised, steroids, biological IVs – the list goes on…
Currently, I’m on a daily dose of 4x 800mg Asacol and 2x 0,2mg Egazil. I’ve quit dairy, meat, fizzy drinks and junkfood and it’s helped quite a bit – although, I do cheat every once in a while!
I want to share my story, as it’s a risk of IBD that I haven’t seen spoken about a lot. And it’s bloody scary. Let me set the scene – it’s in the middle of the night, I’ve slept about 3hours and I wake up in a panic. I can’t breathe without feeling an extreme pain in my whole chest area. I’m freaking out, switching between thinking, “this is probably just a panic attack”, “Oh god I’m really dying this time”, “Nah, its just a cramp” and “Call an ambulance!”. My poor boyfriend wakes up as well and tries to help figure out what’s wrong.
I guess “normal” people would call an ambulance, if they weren’t able to breathe or were laying in this much pain – we can all agree that this is not normal. However, having regularly experienced various degrees of weird pain in weird places, I just took pain medications and went to cry myself to sleep on our hard couch instead, thinking ‘our bed is too soft.’
I suffered with this chest pain for a couple of days thinking it might be a cold, or a side effect from my medications. For two months I had a stubborn flare up and tried Prednisolone, antibiotics and my daily dose of substantial medications – but nothing seemed to help. I was scheduled to start treatment with Remsima – which is a biological ‘super medication’ that you usually receive through an IV.
The last couple of weeks I’ve been calling my hospital, begging the nurses for help. I can’t eat, my stomach hurts, I have to run to the toilet several times a day. I’m tired – how am I suppose to be able to work? The list goes on and on… I get this feeling that they’re tired of me by now and honestly, I’m quite fed up as well. This whole awkwardness of me being a drag and the nurses basically telling me “if you cant endure this, go to A&E”. I don’t want to go to A&E, I’m not dying, nothing’s broken…
So a day before my scheduled IV-treatment I go to the hospital to do some regular blood work.
I casually tell my nurse that I’ve been having chest pains and find it hard to take deep breaths and ask if that might be a problem – maybe I just have a cold. She orders me immediately to get X-Ray.
Why? Because apparently IBD could cause Pulmonary Embolisms – or Blood clots in your freaking lungs!
Crohn’s Disease is hard enough to live with as it is. It’s different for all of us, no case is like the other and its really isolating and hard to find reliable sources both in real life and online. I’ve never seen an article or heard about Pulmonary Embolisms before and now my doctor tells me this is very common for us with IBD.
Hey, thanks for the heads up!
I’ve had two different kinds of X-rays now and still don’t really know how bad it is. The pain is gradually wearing off but my IV-treatment is put on hold. I’ve received a medication through a shot in my stomach to combat the clots. I don’t know if this is a one-off thing, or if this means starting a new regime with new medications for a while but I wanted to write this to give you all a fair warning – I had no idea that this could even be linked with Crohn’s Disease, and now I am living with it.
If you have IBD, if you’re in pain or feel worse than usual – Don’t hesitate to call for help.
You know your body better than anyone and don’t ever let anyone belittle your worries.
To connect with Bexi, you can check out her Instagram page here.