My #GetYourBellyOut story: Lisa

This illness is so unpredictable, it can change how you feel at the drop of a hat. I may look fine and healthy on the outside, but it’s my insides that are the problem. I was diagnosed with Crohn’s Disease in 2005, I was only 18 years old.

I had many ups and downs over the years, in and out of hospital for different things Crohn’s related. For a little over 10 years I managed to avoid surgery with medication, but eventually my symptoms got worse and medicine couldn’t help me.

5 years ago my life was turned upside down. I was flaring and it was so bad that I lost two stone of weight over a six-month period. My body was lacking the nutrients it would usually get from the food we eat and I was going to the bathroom 20+ times a day.

I was admitted into hospital in May 2015 and given a NG tube which is to help feed me – which is a tube that goes into your nose and down into your stomach; without that I don’t know how I would have survived.

A few weeks later, after discussions with my gastro team and now a colorectal surgeon, it was decided I had to have surgery. I also had a perianal abscess and a rectovaginal fistula – it was during the big surgery that they put a seton in place to help drain things.

I was also given a stoma, this is where a small part of my small intestine is pulled out through the lining of my stomach (this was performed via keyhole surgery) and a special bag is placed over the bowel, mine is called a loop ileostomy. The job of this bag is to collect my waste, I empty it maybe 5 times a day depending on what I’ve eaten, and I put a fresh bag on every 3-4 days.

The first year was the hardest. I was full of mixed emotions, which is all completely normal. I adjusted to this new life pretty quickly. Over time I learnt how to change it quicker, now it’s like I’ve always had it, it’s become second nature to me. I’ve also learned how to dress with it. At first it was difficult as I was so shy and self-conscious, but now I feel confident and I wear what I like. I am now more open about it all and I will talk about it to anybody that’s willing to listen as I feel so passionately about it all.

For the moment my stoma is temporary, but in a few years, it’ll be made permanent and even though I know that will be hard both mentally and physically for me… I know it’ll be ok. My stoma has given me a second chance at life.

In spring 2019 I was diagnosed with enteropathic arthritis at 32 years old. I was told I was the youngest person they seen with it. I had very bad symptoms for months before I started treatment. I had swollen knees, ankles, hands and fingers. I couldn’t walk from being in so much pain, I had to use a cane, to a walker and then a wheelchair when I needed to go for appointments. I was put on a very high dose of steroids for six months in February last year. It was so hard for me both mentally and physically, as my body changed from the steroids but they did help for a while as I was waiting to start proper treatment for my joints.

In July I started on an injection called Stelara, which I’m now on for both my Crohn’s Disease and arthritis. So far 9 months on its working well and keeping things at bay. I don’t know what the future holds for me with all of this, but it’s made me a lot stronger and feel like I can deal with whatever is thrown at me as I’ve great support from my partner, family and friends.

I didn’t have anyone to talk to when I was diagnosed or anyone I could go to for support other than my family and IBD team. I joined GetYourBellyOut’s Facebook support group when it was only a few months old – I’ve been a member of the group since day one and it’s helped me so much. I just wish it were around back then as I wanted to talk to others going through similar. I’ve since made lots of amazing friends through GetYourBellyOut who understood it all, and I even met my partner in the group too.

Everyone at GetYourBellyOut knows the ups and downs of living with this disease and the group was a great support for me when I had my stoma surgery in 2015. I had lots of people share their stories with me, so I didn’t feel as scared or alone. I have gained so much confidence from being a member! I don’t see myself as different from anyone else, I’m just unique. I’m thankful for the ladies who set it up and for all they do.