My Crohn’s journey began back in 2019, which although still feels very recent, time has passed by so quickly. I still consider myself to be a newbie warrior to this disease and I’m learning new aspects every day.

Back in Easter 2019, I recall having a fantastic time jam packed with play dates in glorious sunshine as a means to catchup with some friends. I’d not long returned to work following maternity leave and just getting into the swing of a new rhythm of life.

The weeks that followed, was when it truly started, days of significant diarrhoea which I tried to self medicate. I knew something wasn’t ‘normal’ as a pretty standard ‘once a day’ type of girl, apart from the exposure to the odd curry or interview nerves.

After 4 weeks I went to the GP and declared “I’ve got IBS!” and asked for something to help. My only previous experience was over a decade earlier when my relationship broke down. My abiding memory, both of us trying to pretend we were a happy couple at a works social at Alton Towers and me literally sh**ing myself in the lead up to each ride! As well as comments from his colleagues “ew.. what’s that smell?”. My shame and embarrassment of the Alton Towers experience still haunts me to this day.

I digress… The GP, no questions asked, prescribed me with Immodium. I dutifully wait another 2 weeks and see a student doctor, who to be frank, was down right rude, told me to stick with it for longer,  by which point, I was literally in tears in agony and ready to make a complaint about how dismissive she was (I went about migraines where she told me I was a liar and specialist headache clinics didn’t exist – thank goodness she never stayed at our practice!).

After several more weeks, I begged to see a GP. I remember the appointment like it was yesterday. The young lady, who I can only assume was newly qualified down to her enthusiasm, empathy and detailed questioning. I literally broke down in tears in front of her and said I couldn’t cope with it (the diarrhoea) anymore. This young lady changed my life thereafter.

The GP put me on Loperimide and did a huge raft of blood tests. The medication had minimal effect but for the first time I felt like I was being listened to. I had no idea what lay in front of me…

It was pretty much soon after they picked up something wasn’t ‘right’ and I got an urgent referral to the Gastro team, only to be told I had to wait until October (we were in July at that stage) to be seen.

I like many others, was asked to provide a stool sample (more joy on that another day). If you can imagine, I’ve got a jam packed work diary with literally no space or time to do the day job, let alone travel to the hospital to deliver a sample in their business hours! This was the last thing I felt I could squeeze into the day.

By the July, I was so ill, I spent most of my day on the toilet and when I wasn’t on the loo, rolling around in agony. I had 2 weeks off work sick, naively thinking “I’ll get over this”, followed by extended time off to enjoy my 40th birthday celebrations and a family holiday to Cornwall (more on that another day!).

I had got to the stage that summer that I didn’t want to eat at all. I knew I would suffer the consequences and it would literally go straight through me. I mean, ask anyone, I LOVE my food so this made it even harder to deal with.

Up until that summer I had kept my troubles pretty much to my husband and myself, but by the time my sister visited from abroad, my sister, her husband and my mom could see I couldn’t mix one batch of cement (I know you are impressed – yes another skill to my bow!) for our new patio without dashing off or rolling in agony.

Roll forward to September and I had been notified that the Gastro team wanted to do an urgent flexi-sigmoidoscopy but I still had to wait until Oct! WTF is a flexi-sigmoidoscopy? With the “urgent” referral, the ‘C’ word automatically jumps to mind – I spent those weeks leading  up to it, petrified I had cancer. Thankfully by that point I was in a new academic year, which to be frank is mental at the best of times, so served as a helpful distraction.

Only to throw into the mix… my deviated septum. In a 2 decade quest to eradicate my daily headaches and migraines that year, I tried to rule out sinusitis. Well me being me, asks for a subject access request on my data so my sister can get her doctor friend (abroad) to review whether I did actually have sinusitis. This was completely ruled out by our local hospital, but I could tell with the sick glee the junior doctor wanted to say ‘I told you so!’. Well when I got the subject access request pack through, a rather incriminating email came to light, to my surprise and gobsmack, I receive funding for an operation to sort my deviated septum less than a week after my planned sigmoidoscopy!

D Day – the flexi…

I try to yet again squeeze in a visit to the hospital to pick up the prep for the procedure. The receptionist’s hand it over with such a lovely smile. Not until you enter the Crohn’s and Colitis forums do you discover the devil really does exist… MOVIPREP!

I’d raced to Sainsbury’s at 8pm a couple of nights earlier to scour the shelves for ‘clear food’ – does anyone actually realise how difficult this really is (don’t steel my new business enterprise idea!). I’m stood in Sainsbury’s googling what is allowed for clear substances. Not that it mattered. To this day, I have Beef Consome sat in my cupboard. When you have drunk 2 litres of the devil drink and spent the rest of the night on the loo either sh**ting yourself or throwing up, trust me, food is the LAST thing on your mind!

Now bear in mind this was before COVID (if any of us can remember that far back), where your hubby could actually come along to give you comfort and support. I was so grateful to have him with me, as despite the beautiful NHS leaflet on the procedure which I scanned from page to page, I was literally scarred to death. On top of which I had my worst migraine and felt sick as a dog. The thought of this procedure was far worse than my 2 c-sections. The shame and embarrassment of anyone going near that part of my body sent shivers up my spine. So, when I asked for sedation they gave it with no questions asked (I don’t believe everyone is so lucky).

The actual procedure was over before it started but was truly fascinating! To see on camera what is going on, despite not having a clue what it all means is truly amazing. The best part is they tell you there and then what they see, subject to biopsies being verified. To my huge relief it wasn’t the ‘c’ word but instead Ulcerative Colitis (UC). Yes, you have heard correctly, UC, not Crohn’s (the diagnosis only changed last year to Crohn’s following a colonoscopy – more joyful details on other day!). I had absolutely no idea what it meant, but I didn’t care! I didn’t have cancer! I had a diagnosis which could be sorted – hey presto!

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