“You’ve got Crohn’s Disease” – Crohns Blog – Diagnosis
9th January 2015
There I was, back in January 2006, enjoying the last few days of my honeymoon on the beautiful island of Mauritius, when I just couldn’t eat any more. Fair enough, I’d eaten way too much throughout the honeymoon – it would have been rude not to with an all inclusive buffet each night – but this felt different.
I made it through the last few days with a strange stomach pain and went straight to my GP when I got home. He said I’d probably picked up some bug whilst I was away and sent me off with some antibiotics. Two weeks later I returned as the pains had gotten worse, this time another type of antibiotic was prescribed.
Not surprisingly this didn’t work either so when I returned for a third time the GP suggested I see a gastro, a word that I’d never come across before. He said I could have a bowel condition that needed investigating further, and at that point I was fairly relaxed as I’d always had “stomach issues” so perhaps I’d finally get some answers.
I saw the gastro and he said he needed to do a colonoscopy, another new word for me. He told me it was likely I had either Crohn’s Disease or Ulcerative Colitis, but it was more likely to be the former. I’d never heard of either condition before and spent hours reading the leaflets on the Crohn’s and Colitis UK website to find out more.
Before I left the consultation, the gastro gave me Picolax to take to “clean me out” before the procedure. I said “thanks very much but a can of Coke and a Mars bar normally does the trick so I won’t need that”. He laughed and just said that this was different. I soon discovered what he meant and that first colonoscopy experience is probably worthy of its own blog!
After the colonoscopy my gastro said he was now almost certain, but it was about a week later when he confirmed that I did indeed have Crohn’s Disease. He said I’d probably had it for a number of years and the inflammation was pretty severe and I was put straight on Prednisolone to try and bring it down. I remember living off of chocolate and Quavers crisps as I could let them melt in my mouth and not hurt my guts on the way down. I remember the terrible cramps that started and after 6 weeks I went back and told the gastro I couldn’t continue in the pain I was in as the Pred had seemed to have no impact.
He started me on Azathioprine but warned me that it would take 3 months to work, but after another 4 weeks the pain was just so bad a decision was made to stop that and try Infliximab. Within 24 hours of the Infliximab I felt like a new person, it was amazing. No pain, able to eat a full meal without cramps, it felt like a miracle cure.
But just 2 weeks later I was in a meeting at work and nibbled on a handful of peanuts. All of a sudden my stomach started making noises like I’d never heard before. I was getting strange looks from my colleagues as it sounded like an orchestra had started tuning up inside me. I had no idea what was happening, but needless to say it wasn’t good news. That evening I went to hospital and a few days later I had my first surgery, a right hemicolectomy. My surgeon told me that the inflammation was so bad that no medication would have worked by the time I’d been diagnosed and surgery was the only answer. I lost a foot of my small bowel and a finally after another 8 weeks I really did feel like a new person and this time it lasted – well for four years anyway.
This experience led me to want to get involved with a Crohn’s charity. I decided to join the committee of forCrohns as it was volunteer run and every penny goes straight into research. When I think back to my diagnosis and not having heard of Crohn’s, I find it strange that now whenever I tell someone I have Crohn’s, they always seem to have heard of it, so hopefully the work we at forCrohns and other charities are doing is paying off.
So from honeymoon to antibiotics to colonoscopy to diagnosis to steroids to Azathioprine to Infliximab to surgery to forCrohns committee member within 8 months. It was certainly an interesting first few months of marriage!
Thanks to Paul Goodmaker for this blog post. As you can probably tell, Paul is an active member of the forCrohns Committee, and has been for the last 8 years. He is on Twitter at @walshy365 and is regularly updating the forCrohns website and posting on behalf of the charity on the @forCrohns Twitter account too. If you’d like to find out more about forCrohns and how you can get involved click here.
To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We plan to have a different topic every month in 2015 and we’d love you to contribute. Find out more here.