Dear Diary

Dear Diary: Go Your Crohn Way

Almost 6 years ago after months of stomach pain, bloody diarrhoea and general run-down-ness I was finally diagnosed with Crohn’s disease after the doctors stuck a camera up my butt to see what the heck was going on inside of me. Last Wednesday, as I sat in a hospital waiting room awaiting my third go at this super fun activity, I finished reading Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s Disease by the inimitable Kathleen Nicholls.

Go Your Crohn Way

I know that I usually post my book reviews in a monthly roundup but I hope that you’ll forgive me this once as today I want to talk about much more than just a book. Go Your Crohn Way is Kathleen’s IBD story and as well as reviewing it I also want to tell you a bit about my own along the way.

After my initial diagnosis I was, to put it simply, relieved. I’d been pawned off with the suggestion of IBS for months despite knowing that there was something a whole lot more going on with me. There was already a history of Crohn’s in my family and so it didn’t really come as a shock to me. For my family it was more so as I hadn’t really mentioned anything to the about the issues I’d been having as there were other things going on in my life that took precedence.

My Crohn’s disease was actually fairly mild and easily gotten under control with the use of foam enemas (sexy) for which I was thankful. I mostly tried to pretend that nothing was wrong and that I was just the same as everyone else. It wasn’t until months later that I actually decided to look for more information other than what I had read on the Crohn’s & Colitis UK website (an absolutely fantastic resource for any of you who may be interested) something a bit more personal. I started following a plethora of IBD bloggers who were much braver than I when it came to talking about their experiences and one of those was Crohnological Order written by Kathleen.

Kathleen’s blog (and twitter) have been a lifeline for me over the years. Her writing is real, poignant, upbeat and humorous. Her puns are ridiculous and her love for Jon Hamm knows no bounds. She proves that she is so much more than just her disease but that doesn’t mean that it isn’t a huge part of her. When she announced that her first book was due to be published I was so incredibly proud of her despite never having met in person and knew that I would probably break my book buying ban in order to get a copy (in the end I didn’t have to as I snagged a kindle copy thanks to the kind folks at NetGalley – yes I know I mention them a lot and no, I’m not sponsored by them).

For a book about something as serious as an incurable disease Go Your Crohn Way had me laughing out loud plenty as I read it on tubes and busses as part of my daily commute. Kathleen’s humour shines through on each and every page which makes the whole thing so much more digestible. IDB is a scary thing but this book is definitely not. It’s refreshingly accessible and I’d recommend it to anyone who’s been newly diagnosed or who has a loved one with the condition.

I actually no longer have Crohn’s disease. No I haven’t been cured of an incurable disease you idiots. After moving to London three years ago I was re-diagnosed with left-sided ulcerative colitis instead and prescribed Pentasa to keep me symptom free. UC and Crohn’s have a reputation as pooping diseases but they affect people in a multitude of ways – both physical and mental and both of which I’ve struggled with over the last few months.

It started on Easter weekend – I was visiting my friend Lauren in Southampton and I had a horrible sharp pain in the left hand side of my abdomen that ended up lasting for several days. It almost felt like trapped wind but “letting go” didn’t help in any way. I felt generally run down but I also had the family holiday to Tenerife coming up and I didn’t want it to be spoiled.

Once I was back in London things slowly deteriorated. My trips to the bathroom were getting more frequent, I was having accidents when I couldn’t get there quickly enough, my appetite more or less completely went (and if you know me then you know that there is very little I like more than a good meal) and I started to get more and more tired every day even when I did very little. I was pretty miserable.

Fatigue is absolutely the worst symptom in my opinion. It’s so much more than just being a bit tired and it can’t be fixed by simply getting a couple extra hours of sleep a night and yet it’s invisible and so difficult to explain to people who’ve never experienced it. For weeks almost all I did was get up, go to work then come home again and just lie in bed. Even keeping myself upright on a packed tube carriage on the way home was a challenge some days!

After two months it was time to admit defeat and that my medication was no longer maintaining my body in a state of remission. I almost cried with relief when I was granted an appointment at the Gastroenterology department just a few days after finally getting to see my GP. I was prescribed with my first ever course of oral steroids, booked in for a colonoscopy the following week and told that I would probably start to feel better by Sunday. I was completely sceptical that they would take effect that quickly but I was completely and utterly wrong. Just two days later I felt better than I had in months! Steroids are a beautiful thing people – although I’m continually paranoid about moonface! Obviously it’s not a long-term solution but I have to say I am so impressed with the care and support I’ve been given by the NHS and I am so thankful to live in a country with free health care. I can only hope that it stays that way in the future.

Obviously I’m not cured, I likely never will be, but I will admit that it’s given me quite the wakeup call. I feel reinvigorated and happier within myself than I have in ages. More determined than ever to make mine a life worth living and this is the same message that Go Your Crohn Way imparts, it’s just that sort of book.

P.S. In case it’s of interest here’s a couple more excellent IBD bloggers you should check out; Inflamed and Untamed and The Chronic Adventurer

 

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