1st Outpatient Consultant Appointment Crohn’s Disease / Ulcerative Colitis

My first consultant appointment was initially scheduled for the 13th February but after tapering down to 30mg of steroids and getting some of the oh shit! (pun intended) symptoms back I promptly called the IBD nurse helpline at my hospital. They got me booked in for an appointment within a week which is really the best service I have ever had from the NHS – well done!!

The appointment went so well, I went armed with my notepad filled with questions and he answered all of them in great detail. The IBD nurse I had spoken to had advised that they’d likely put me on Azathioprine due to other lower level drugs not being recommended so much for Crohn’s disease but my consultant decided to try out Pentasa whilst I wait for my colonoscopy. They are currently at a 99% certainty that I have Crohn’s but do want to rule out ulcerative colitis for sure in the colonoscopy before putting me on Azathioprine.

I had more blood tests, I am surprised I have any blood left and am now a complete professional at having them! The bloods included just checking all of the usual inflammation stuff and checking that I have the enzyme TMPT which is needed for you to take azathioprine. They also checked me for hepatitis, TB and some other conditions which they have to know before you start an immunosuppressant drug (Aza).

Other maybe interesting or maybe completely boring insights from the appointment included that I have either severe ulcerative colitis or Crohn’s which isn’t very reassuring and when I was admitted there were serious concerns my bowel might actually perforate which is really terrifying. I won’t even lie my anxiety has increased slightly after hearing this and now every time I get a pain in my stomach I do wonder if poo is leaking into my abdomen which is just not great especially when most of my pain happens in the dead of night when I can only hear the sound of my wife and dog snoring. I also learnt from him taking a detailed history of my health and bowel / stomach habits that I have likely had this since the young age of 18 and in total have had about 8 flare ups in that time, this bit made me feel like a bit of a legend but also sad that past Abi should have gone to the Dr’s and sorted her life out instead of being embarrassed to talk about it and thinking it would just go away.

Some of my other questions included could it be cancer to which he said no – great news! and also if this would be my only colonoscopy to which he told me no again and I’d likely have many many more – I cannot wait!!

Overall even with the not so great news of my bowel nearly perforating and multiple future colonoscopies I felt really at ease and in good hands, I have started taking Pentasa which I will write about once I know if it’s done anything and am just keen now to find out whether I’ve got Crohn’s or Ulcerative Colitis and if I need to start taking Azathioprine.

Thanks for reading!

A x

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