Posts Tagged ‘crohn’s’

“You’ve got Crohn’s Disease” – Crohns Blog – Diagnosis

Written by Paul Goodmaker on . Posted in Blog

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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.

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When I first heard that I had Crohn’s Disease – Crohns Blog – Diagnosis

Written by Paul Goodmaker on . Posted in Blog

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2nd January 2015

When I first heard that I had Crohn’s Disease, it was spluttered out in panic by a young student doctor. He’d accidentally let it slip while his boss; The Big Scary Properly Qualified Doctor was out of the room. To his credit he was trying to be helpful and answer my barrage of panicky questions whilst rummaging, sweaty-palmed through my medical notes. It was my own fault really. My own talent was his downfall. My investigatory skills are obviously akin to that of Sherlock Holmes and if I’d known I was quite as skilful at getting secrets out of men I wouldn’t have had to spend all those years wondering why my first boyfriend kept telling me that size doesn’t matter.

The only previous knowledge I’d had of Crohn’s had come from 5 minutes prior to my premature diagnosis, when someone had told me they knew someone who had it who had “instantly gone blind, lost all their hair and had to get one of those bag things”. Talk about scare-tactics. This was all said in the confidence that obviously Crohn’s isn’t what I have! It’s what other people have! Therefore it’s totally ok to embellish the facts. Only it wasn’t OK, because I did have it. I was one of those ‘other people’. And I was terrified.

After my clumsy diagnosis I was promptly told there are treatments for Crohn’s but that it is incurable. Then I was left to my own devices for a day or so until I could speak to my consultant who would explain everything. So what’s a woman to do when she’s had the bombshell of an incurable illness dropped on her from a great height followed by radio silence? Google it, that’s what.

Now, a good few years down the line and being a seasoned ‘professional patient’, I of course know that ‘googling’ your illness is the absolute worst thing you can do. Mainly because using sites like WebMD is akin to completing a multiple choice quiz where the answer is inevitably always DEATH. But at that point in time I was a nervous wreck, newly diseased and no idea of what the future would hold. I was getting nowhere in questioning the nurses and fobbed off by doctors at every turn. When my consultant was finally to grace me and my badly-behaved bowels with his presence I was prepared. I had my mental-list of questions at the ready and was primed to give him a piece of my mind. What actually happened was much less impressive. I burst into tears because he happened to raise his voice and then violently vomited into a sick bowl and over the bed sheets mid-sentence. GIRL POWER!

After that it took a while for me to begin to put all the pieces together. I started making notes when I was able, as the meds I was on were causing confusion and I was floating in and out of sleep with more regularity than a narcoleptic Sleeping Beauty. With the help of the more considerate doctors and nurses I began to understand a bit more about how my illness was going to affect me. Now that I knew that what was wrong wasn’t just in my head, it was actually a relief, and I was filled with determination to try and get better. I hadn’t quite gotten my head around the fact that this wasn’t going to go away, ever, but I’d realised I wasn’t going to die a thousand deaths in the foreseeable future, so one step at a time. A motto with this illness I still try to live by. That and NEVER GOOGLE IT, of course.

Thanks to Kathleen Nicholls for this Crohns blog post. Kathleen is on Twitter (@kathfantastic), has her own blog on Facebook as well as at http://crohnologicalorder.blogspot.co.uk/ and has her very own website http://kathfantastic.weebly.com where you can find more about her, further inspiring blog posts and other great content.

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.

Back to Crohn’s Community Stories Home