MY IBD EXPERIENCE: PART 7

by - May 12, 2018

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It's been so long since I last wrote about where I'm at with my Crohn's, so if I miss anything, I'm sorry!

So back in January 2018, I met with Dr Stoner hoping to be told I'd start infliximab.

Nope.

He's decided my case is too complex for him - with my abscess and fistulas on top of the Crohn's, he spoke to a colleague and they decided a referral to St Mark's in Harrow is my best option - they're a specialist bowel hospital and I'm told to look up Prof Ailsa Hart who will be my lead consultant. I do so and oh my goodness, this woman is amazing, her CV and credentials are astounding, she's my new poo hero.

I'm very upset and deflated, but I'm told they'll be in contact after a week or so. Two weeks pass and I hear nothing so I chase my IBD nurse and my consultant's secretary - they assure me they'll chase St Mark's. Weeks go by and finally mid-March I get a letter through with an appointment date of 30th April.

I am so excited and so relieved to finally get my appointment - I have no idea who I'm meeting or what to expect.

30th April rolls around and I was gonna go on my own - what a silly! - but my bestie Jess said she'd come along last minute, she's a pro at hospitals as her daughter Piper-Rose has HLHS (Hypoplastic left heart syndrome) which is a really rare heart condition, which means she has had open heart surgery already and she's only three (Piper is my lil hero & I love her v much).

My stomach is playing up so much, for the first time in weeks, so I think the anxiety definitely affects my bowel movements and makes me need to go more frequently and with more urgency. We worry we're gonna be late, so I call the hospital to let them know - they're running like an hour behind we find out when we get there! I'm so tired, and so hungry but don't wanna move in case I get called. They check my height and weight - 5ft 2in and 7st 8lbs. Eventually when I do get called I'm met by Prof Ailsa Hart (my consultant) and Phil Tozer (my new surgeon). To be honest, most of it's a blur - Phil asks if he can examine (pop a finger in me bum) me briefly as my scans didn't quite show where one of my fistulas goes. I explain that I'm very sore today, but we could try and both he and Hart told me I could stop at any time just to say so if it got too much. Prof Hart was stroking my hair as I cried a little bit but eventually it did get too painful, so we stopped.

I was so full of emotion and joy to be told I need surgery ASAP to have an ileostomy and that I will also have biological drug therapy too. I'm reassured their psychiatrist is brilliant, the stoma nurses are always on hand and that I will be fully supported. They do offer me to have the operation closer to home but I felt it best to stay with St Mark's. I won't be there too long - hopefully - and I know they will give me the care and attention I need. I ask when it's likely to be...and they said it could be any day now.

WAIT WAIT WAIIIIIT

My best friends - and their new baby - are coming back from Austrailia on 18th May, and my other two best friends are getting married on 26th May. There is NO WAY I am missing either of these things, I beg to put it off and they tell me they'll see what they can do. I go to have a blood test (lol yay anxiety, thanks Jess for holding my hand), and Tozer comes to find me and asks if early June will be okay and of course, it is.

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