Hannah Lang

Living Fearless: My 30 year Journey with Crohn’s Disease

I was diagnosed with Crohn’s Disease at 13, and now, 30 years later, I’m sharing my story as part of the Live Fearless Challenge to raise awareness and funds.

My teenage years were filled with flare-ups and hospital visits, but it wasn’t until my mid-20s that things took a turn. 

At 25, I developed my first perianal abscess, which led to a fistula. I had setons placed and learned there was much more to Crohn’s than inflammation and bowel obstructions.  By 32, I was stuck in a relentless cycle of perianal abscesses, pain, and numerous hospital stays. The word ‘bag’ started to come up at Dr visits, I just shrugged it off thinking that won’t ever happen to me.  After the most difficult 18 months of my life I told my surgeon: “I’m ready for the bag.” A week later what was supposed to be a short ileostomy procedure of 1.5 hours  turned into 8.5 hours of major surgery, including three bowel resections and over a metre of bowel removed. It explained why I’d been so unwell for so long. 

Since then, I’ve been on 8-weekly Infliximab infusions and am lucky to be able to have this at my local community hospital.  

In 2022, after 7 healthy years with a temporary stoma, I chose to make it permanent with a total proctocolectomy.

The stoma, once a source of fear, became my freedom.

Despite being told I may never have children, I’m now a proud mum to two amazing and healthy  kids, a daughter and son. I feel so extremely lucky to have had my wonderful partner go through all of this with me, being right beside me every day of the last 12 years of this journey.  Not to mention my amazing parents being there every step of the way since the beginning. 

If you're facing the possibility of a stoma, I get how scary it sounds — but for me, it was life-saving. I’m now truly living fearless — pain-free, healthy, and able to enjoy every moment with my family and friends. 

I thank my surgeon, Mr. David Lloyd (TAS), for giving me my life back—for performing two major surgeries with such seamless precision and professionalism. There were no faults, no setbacks—just total excellence.

Week 2 79/150

Week 1 update 36/150

Diagnosed aged 13

I was diagnosed with Crohn’s at 13.  From what I remember  I started to lose weight, lacked energy, vomiting, got belly aches off and on, various bowel movements and blood in my stools. That was 30 years ago and I still remember mum picking me up from school taking me to Dr Appts or scans, etc quite often. Being a mum now myself I can now understand just how mum and dad would have felt going through this all with me, and initially not knowing what was wrong with me whilst waiting for a diagnosis.  I remember randomly vomiting at school and at the bus stop, getting unbearable pain after certain foods.   Once diagnosed I remember going to the school office every lunch time to get my tablets from the office, I was having anywhere from 2-6 tablets (mesasal) morning noon and night  to try and keep the inflammation in the lining of my bowel under control. I was on and off prednisolone back then as well;  I loved how it made me feel better so quickly,  but I hated how it made me look and hated how the flare ups and pain came back when I had nearly got off the dose.  I remember my four big sisters spoiling me with gifts when I had hospital trips.  

I was lucky and never had any major surgery until age 33.  

I learnt what abscess and fistulas were around age 25, more to come to help raise awareness  on this. 

Target reached….

Why am I doing this…

Because I am one of those almost 180,000 people.  This year is 30 years since I was diagnosed with Crohn’s Disease at the age of 13, and the last 10 years of that as an Ostomate. 

I have never shared my story before, it’s not that I wanted to hide it,  I have always just got on with my life to the best of my ability.  As you get older and maybe now being a mum I think it makes you realise how sharing your story may help someone else.  Yes , over the years Crohn’s has certainly knocked me down more times than I can remember, and more than anyone will ever understand but I have never let it hold me down for too long.