Hi, I’m Georgia. I can only describe living with Crohn’s Disease as a never-ending rollercoaster ride. Imagine you’re on the biggest, scariest rollercoaster there is and you’re going slowly up to the top and you’re thinking, 'this isn’t too bad actually, a little bit scary, but I can handle it...' and then, all of a sudden, you go plummeting down at top speed, you’re terrified and you’re just begging for it to be over. Except it never is over, you’re in a never-ending loop of the good and the bad.
What I mean to say is that there are good days and there are bad days, and you never know which one you’re going to have.
Georgia
Living with Crohn's Disease
My journey with Crohn’s Disease has been rough, as I imagine all of our journeys are. I was diagnosed at 16 but I’d been struggling with my bowels all my life. At this stage, I was passing blood multiple times a day, losing weight like there’s no tomorrow until I was a measly seven stone. I was falling asleep wherever I was. I was terrified. But thankfully I had a really supportive family and a determined mother who wasn’t going to let me stay on a waiting list for six months until I saw someone.
She took me into hospital on one of my worst days and it all went from there. I’ve been rather unfortunate that medications don’t tend to work for long (if at all). I’ve had multiple hospital stays and so many steroids it makes me sick to think about. I feel as though I am a walking poster child for steroid side effects. I’ve put on so much weight, which I struggle to lose. I’ve got deep purple stretch marks all over my body, which they say are from the steroids and water retention in a lot of my body, not to mention the brittle teeth and bones.
According to the doctors, it would have been my urine infection (they think) that caused my sepsis. Due to it being left untreated, and my body preparing to give birth, it just got worse and worse. I eventually got to a point where my body was in agony. I was delirious. When they checked me over, my blood pressure and heart rate were extremely high. I was in hospital with sepsis when I went into labour, so they took me for an emergency c-section, as I couldn’t have an epidural and had to have anesthetic. My recovery was okay. They kept me in for about a week after and my daughter had to have antibiotics too, because of her blood test results, which they thought was due to my infection.
When I’m asked what I’ve found most challenging in my experience with Crohn’s Disease, I would struggle to limit it to one or two things. If I’m honest the entire experience has been challenging. I’ve had to come to terms with the fact that my body will never be as it was before. I’m still not there yet, but I feel very fortunate to have the support of my wonderful husband who’s been by my side every step of the way. I’ve missed out on so much.
I’ve been so ill over the years that me and my husband have never been on holiday together - and we have been together for 10 years. I’ve missed so many days out and so many of my daughter’s first experiences. For years I felt like I failed as a mother, and I still have those days. My daughter knows my struggles and she never lets me beat myself up over it. Sometimes I guess that makes it harder because she’s so understanding. Then there’s actually living day-to-day life whilst in a flare-up, having to wear adult nappies because I can’t stop soiling myself. It’s just not a very nice disease at all and it doesn’t care for your dignity.
That all being said, I am optimistic for the future. We have to be don’t we? We have to believe there is a light at the end of the tunnel.
As I sit here, waiting on news of my surgery and what kind of surgery I will have (will I have my rectum removed too?), I’m terrified. I have my days where I break down when it all gets too much, but although there are risks, and it may not bring me a better life, I’m hopeful it will and I’m hopeful that my family, as well as myself, will finally have peace.
If there’s one piece of advice I would pass on to others, it would be that if you think there is something wrong then DO NOT leave it to get worse. I’ve learnt my lessons over the years with that one! Especially when it came down to my experience with sepsis. Also, speak to people who are in the same situation as yourself. I never thought I’d be one to reach out but I’ve recently joined pages on Facebook and made friends from there. The people are so lovely, because we all know what each other is going through.
Make sure you surround yourself with only positivity and try to reduce stress. And last but not least, YOU are the one person who knows your body best, don’t let anybody tell you different.
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