Love conquers Crohn’s

14 February 2020

To a certain extent if I hadn't have been diagnosed with Crohn's Disease, I wouldn't have the life I have now.

Setting the scene

My story starts in 2006 when I was diagnosed with Crohn's Disease at 21. I had been ill for about 2 years, losing half my body weight and slowly losing all hope of finding out what was wrong me. Eventually, during one of a few inpatient stays and more tests I was given a diagnosis of Crohn's in my Terminal Ileum and Caecum.

At first after my diagnosis I went into a denial phase. Why me? Why my life? Eventually I accepted that I need to change things and started talking to fellow sufferers like myself.

I started talking to a guy called James. He was so reassuring and gave good advice as he is a fellow Crohn's sufferer. He even introduced me to an amazing bunch of people all in the same boat as myself but with different experiences to tell.

The meet-cute

I finally met James in August 2007 and it was love at first sight. It felt like we had known each other years, it felt so comfortable, even with our frequent bathroom trips!

James had major surgery two months later, which he didn't tell me until the month before for fear of me leaving him. He had a subtotal colectomy with temporary ileostomy and was in hospital for 9 weeks. I travelled between High Wycombe and Brighton every day for the entire time he was in hospital. I stood by him because I was falling in love with him and knew in the short time we'd known each other, he would do the same for me.

Lasting love

Fast forward a few years; we've been engaged and living together since 2009. I couldn't ask for a better husband to be, he is one of the best people to understand me and vice versa. He looks after me when I flare and I for him.

In September 2013 we welcomed our daughter Amber Grace in to the world. Even though James and I were on infliximab, even through my pregnancy, she was a perfect 7lbs 14oz. We then welcomed our second daughter Ruby Eloise in July 2015. Again, even though we were both on infliximab and mercaptopurine this time, I had a lovely pregnancy and she was born a healthy 8lbs.

Paula Jayne,
Living with Crohn's

We have questioned both our daughters risk of getting Crohn's due to two parents having it but it's just a matter of waiting and seeing. If they do then we know how to handle things. 

Dream job

I’m currently working as a Healthcare Assistant for my local hospital in the Endoscopy department and I love my job! The patients I have and the people I work with are amazing! To be able to relate to some of the patients and their journeys gives that extra bit of empathy and helps add to the care I give them.

I also help once a week at an infusion clinic where I help cannulate, take blood from patients and look after them during their infusions for their Crohn's or Colitis. Working so closely with the IBD team also helps with my knowledge as I learn so much through them about treatments that I wouldn’t necessarily have known about. 

In sickness and in health

As for my illness; I've been lucky as James is much more poorly than I am. I've managed to escape major surgery (apart from a cheeky cholecystectomy in March 2017) though I know it is inevitable at some point and when it does happen my lovely consultant has said it would be major surgery as my large bowel is adhered to my small bowel, I have internal fistulas and also a lovely little ‘flower’ of adhered small bowel too.

These 13 years since diagnosis haven't all been plane sailing. In September 2014 I was admitted with Neutropenic Sepsis due to having infliximab and steroids for a query Crohn’s flare when in fact I had contracted Glandular Fever (which I didn't know I had at the time). If James had left me one more day the consultant said there was a strong chance I wouldn't have made it as my body was completely shutting down and quickly!

It took a while to fully recover but I got there. Unfortunately after many good years on infliximab I stopped responding and I’m now on adalimumab. Adalimumab has been a god send, though for it to be fully effective I have to inject weekly which, with the switch to bio similar adalimumab, was awful!

I'm currently waiting to switch to another bio similar and hopefully that will make life so much easier as when you know you have to take a medicine that keeps you well but causes you pain to take it, it’s a catch 22. I was also diagnosed as having bile salt malabsorption too in 2017 but thankfully it is only mild and has remained stable with out medication.

In general I'm finding I have more good days than bad days. But when I do get a bad day I know that James will always be there to help me as trying to continue as normal is virtually impossible. 

I look at my friends sometimes and all the things they do and wish I could have a care free, spontaneous life like them (as spontaneous as can be with two kids) but then I look at my life and think, 'Nah, having to cope with everything I have, and having James and my beautiful girls in my life... I’m the lucky one and wouldn’t want to change it!'

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