My name is Liam I’m 37 years old, married to my beautiful wife Robyn and father to two beautiful children, Sophie 12 years and Leo 3 years.

Where it all began

I have had Crohn’s disease since the age of 10 and had to fight this nasty disease with many different medications and surgeries over the last 27 years. For the last 3 years, my Crohn’s disease has been very stubborn. After 3 major surgeries on my bowel and two very potent biological drugs and constant Prednisolone treatment over two years, my fight with Crohn’s was coming to an end (although I didn’t know this at the time).

Steroids (prednisolone) were the only medication getting my constant flares under control and giving me some relief from the pain and complications that came from having Crohn’s disease. But I was starting to rely on these very heavily and this was to become my downfall and my later emerging diagnoses of Addison’s disease.

At the time I never knew the damage that steroids were having on my adrenal function, I just assumed it was the moon face, overeating and possibly bone density symptoms I had to be aware of but oh no…...these symptoms were minor compared to what the steroid was unknowingly doing to my adrenal gland.

My fight with Crohn’s disease -  ileostomy formed

I went into hospital in August 2017 with yet another flare, unfortunately, everything the hospital tried and the once trusted steroids were not working. I became very ill over a 2 week period. Sepsis and an infected bowel was killing me! To my horror emergency surgery to have my large bowel removed and an ileostomy formed was the only way forward. This was a very scary and daunting reality to face.

After emergency surgery, recovery was rough like nearly dying rough!! Constant infections had no control of my body and couldn’t move from my bed! I didn’t leave that hospital until November, approx 12 weeks in a hospital bed fighting for my life.

The Crohn’s and stoma story is for another blog so I won’t bore you with these dramas on here hahaha (check out my Instagram and Facebook page for more.)


Photo credit: www.photogenicphotography.org.uk

Awareness calendar event by Jessica Logan for the Making The Invisible, Visible 2021 awareness calendar. 

To find out more and support the campaign, visit makingtheinvisiblevisible.org.uk.

 

Addison’s disease diagnosis

I was finally diagnosed with Addison’s disease in January 2018. This was horrifying to find out but also such a huge relief as to why I had so many undiagnosed crises and had a terrible recovery after major surgery.

Of course, once diagnosed I could look back at occasions when my diagnosis could have been picked up. One time in around 2016 I was heavily dependent on steroids and I never wanted to be on it. But as reliant on steroids as I was … I tried to come off slowly and with little support from the hospital (I never knew the disastrous consequences of doing this! And my poor misjudged actions hospitalised me at least twice before diagnosis I believe). Every time I was pumped with iv hydrocortisone, put back on Prednisolone and sent on my way! Warning flags for me and my wife were being raised about possible Addison’s but we never fully pursued that with the hospital. Well, until after surgery in 2017….

I finally asked the question with my gastroenterologist as it was clear something was up! After a cortisol blood test it showed my body was not producing any cortisol and this clearly answered many of my previous hospital admissions and recovery worries. I was finally sent to a top hospital in London UCLH and investigated by the endocrinology team.

Treatment – life with Crohn’s and Addison’s

Treatment of oral hydrocortisone of 10mg 5mg 5mg throughout the day was prescribed and like magic, I had become the Liam I had lost many years ago...less fatigue, a better mindset, just more get up and go that I had ever had in my whole life of living with Crohn’s and unknowingly with Addison’s disease.

Although I was not happy that the overuse of steroids by my gastro team (which had been the overriding factor as to why I now had Addison’s disease) I did at least have an answer and a manageable plan to move forward with. I must add that although I was not happy about the overuse of steroid treatment, I never held any anger with the team treating my Crohn’s disease….the disease caused me and the team a lot of problems and was very difficult to manage. It’s just a great shame that perhaps a little more diligence with me and steroid treatment could have prevented this disease!

"I’m happy to say that although life is far from perfect, it’s the best perfect that I have ever had.

My ileostomy has given me a way to manage my Crohn’s disease and the hydrocortisone and endocrinology team have given me a manageable plan for Addison’s disease."

So as you can see life may not be perfect, but it’s a life of future excitement and with a good manageable plan, I can achieve pretty much anything with my wife, kids and friends.

 

It’s been a tough road but I guess we all end up having a bumpy road in one way or another, yes it’s been a huge challenge and one I wouldn’t wish on anyone but it’s my life, my journey and I hope to share my journey to help raise awareness about Crohn’s disease, having a stoma and living with Addison’s disease.

"The literature and support from Addison’s Disease Self-Help Group (ADSHG) and their Facebook support page has been invaluable to both me and my wife when having to deal with crisis, infection and mental stresses, so we thank you so much for your time, efforts, support and awareness."

I have learnt a great deal and I hope I can support others on their journey.

You can follow Liam's personal journey on Instagram and Facebook and his website StomaWorld.com.

Looking for more information? Check out the ADSHG downloadable publications.

Do you have a story about Addison's to help or encourage others? Whatever your story or experience we would be delighted to hear from you. Tell us your story.