World IBD Day | My Crohn’s Story

World IBD Day 2023

World IBD Day is being held on the 19th of May 2023. 

Myself as well as others may be aware that the Support and Awareness ribbon for IBD is purple. I have this ribbon tattooed on the inside on my left forearm as a reminder of what I live with and the fact it hasn’t beaten yet, it has tried, but failed on multiple occasions.

World IBD DAY has events in over 50 countries on 5 continents. On this day we all want to raise as much awareness as possible about this disease. We also want to urge governments and healthcare professionals to take action and show support to the 10 million people currently living with a form of IBD.

Studies in the UK show that there are currently over half a million people living with a form of IBD in the UK alone, that is currently 1-23 people living with this condition at the moment, this puts us 2nd under the USA with their figures currently at 3.1 million for those living with an IBD diagnosis. 

This always blows my mind. When we are first diagnosed we feel so alone and isolated. This kind of puts things into perspective. 

I have been living with Crohn’s disease now for 20 years. I have had my ups and downs, I have also had surgery, a fair few surgeries in fact. I spend my free time raising awareness of living with Crohn’s, a permanent ileostomy and some other added comorbidities such as fibromyalgia, psoriatic arthritis alongside eczema and pustular psoriasis. This is my journey, not everyone will go on to have more than one diagnosis, but it is frequent with autoimmune diseases for those of us who live life in this community. I have also recently been diagnosed with a rather large inclusion peritoneal cyst that is a by product of my Crohn’s & the proctectomy surgery. 

What is IBD?

IBD is a bowel disease. For some, it will only affect the large bowel (ulcerative colitis) and for others, it impacts the whole digestive tract, from mouth to anus (Crohn’s disease). There are also many that will experience joint pain, arthritis and other autoimmune diseases that will run alongside the diagnosis of IBD, but today is mainly focusing on IBD and how it affects others, as well as myself.

The symptoms of IBD

The symptoms of IBD pre-diagnosis are varied and not everyone will experience all of these, but I have listed them below:

• Diarrhoea

• Fever & fatigue

• Abdominal pain and cramping

• Blood in your stool

• Reduced appetite

• Unintended weight loss

My original diagnosis

It took a long time for me to get diagnosed – pre diagnosis I was in and out of my GP’S on a frequent basis, I experienced all the above symptoms and a few added extras such as cellulitis on my legs, rashes on the tops of my arms and some rather corking cold sores, which I am also currently sporting at the moment (the irony). My initial diagnosis was fistulating Crohn’s, then refractory Crohn’s, I then got a definitive diagnosis of perianal Crohn’s in 2015, 6 months prior to my second stoma formation.

My GP at the time practically laughed me out of the surgery and referred me to the local dieticians as it was presumed I was anorexic due to my age and the amount of weight I lost at the time. It took me 2 years of burying my head in the sand and for a fistula to develop to get my diagnosis. I had an extended 5 week hospital stay as I was rather emaciated at the time. 

Years on and off of Immunosuppressants helped for a time, I fell pregnant in 2009 and had a flare up due to having to stop my medication, this then led to a bowel perforation during an emergency c-section. This was traumatic for both myself and my family as I was incredibly poorly and spent 3 weeks on life support and just over 3 months in hospital. This led to my journey with stoma life. 

Since my bowel perforation I have had a lot of  surgery, including a reversal, abdominal reconstruction, the formation of 3 stomas and a lot of internal scar tissue removal. I have never quite achieved full remission, I will have to live the rest of my life on Immunosuppressants due to my Crohn’s and additional comorbidities. 

If you got this far down, I commend you for reading my story. I come from a time where many others including myself did not have the online communities there are now. It was a lonely and isolating time for many. I spend my time raising awareness and showing others that you can have a life after diagnosis. If it wasn’t for my illness and my stoma I would not be the person I am today. 

I have never let this define who I am as a person, it’s just a small part of me that comes along for the ride. Since my third stoma formation I have gone back to adult education so this year, I will be able to own and run my own accounting business with the correct certification, at the moment I work as an accountants manager for a white label web design agency. I am incredibly grateful, I have a flexible working schedule which allows me to work from home on my not so good days. 

I am currently on medication, my Crohn’s is still active but I manage life with a smile on my face, a spring in my step and I have learned to listen to my body and take the time out when I need to. 

As always

Many thanks for reading 

Louise Xx