GI Clinic – 15.11.16

I last saw my consultant the day I was admitted to hospital in mid August. I remember how disappointed he looked when he had to leave – he was going on annual leave for the rest of the month – and looked anxious. With good reason too, I would say goodbye to my bastard colon 11 days later.

So today when we nodded to each other in acknowledgment before my appointment, it was nice to see him happy to see me.

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We talked mostly about my recovery from surgery and how Vedolizumab was going. I had received my final loading dose last Monday so I was feeling in good sprits but of course, this was without the issues the weekend has brought me! It did mean my medical notes were not in clinic but on the surgical ward being uploaded to the system, excellent!

“So how are you managed with the stoma and everything?” he asked, looking hurt, as if he had me that decision for me.

I told him that I don’t regret choose that surgery at all. I have had no problems with it up until the weekend and my blockage. But it doesn’t phase me, I just take it as a lesson to be learnt from and move on. I am fine with an ostomy. Great in fact, no pain and only on Vedo; a fantastic result in my eyes.

He asked about my Nottingham appointment from September – of which he hasn’t received any correspondence about, naughty Queens Medical! – so I relayed the following: surprise at the Vedolizumab being restarted again, even more surprised at the ileostomy having to be done, confused as to how it gotten so bad to need it being done – cue my consultant looking hurt again, like a puppy – but strongly advising me to get my Crohn’s tested regularly because of the likelihood of reoccurrence; testing being faecal calprotein and repeat MRI evenly spaced out.

We both agreed this was a good next step forward. He wrote me a pathology form out and gave me a sample bottle.

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Time for a poo sample! First one from my ostomy!

“What happens with Vedo now? How do you test if it is working? Is it working?” I asked.

“Well, we can’t test to see if it is working with bloods. Trough levels for Infliximab have only been around for the last 3 to 4 years and Vedolizumab has only been licenced for a little over a year.”

I realised I was asking a lot. I just want to know what control I had over my future and my treatment plans. Ultimately, I know what Good Hope can offer me and what Nottingham can offer too. Sadly, Good Hope has nothing after Vedolizumab, if it fails. He is unsure if it will but is keen to keep an eye on me. Given my past history – a clean colon in March 2016 to it then being removed in August 2016 because its diseased, ulcerated and bleeding – he is obviously very keen to not let me get to that point again. I think he would prefer I go to Nottingham for treatment anyway but it is far away and it’s a completely different and complicated set of issues. Its going to take a leap of faith and I’m still trying to get completely used to this current batch.

This is not to say that Vedolizumab is even close to failing. If anything, my blood work looks good this time around, I feel better in myself, my diseased colon isn’t an issue and my ostomy is working well and I am managing. This is completely different to last time, it can’t be compared. But we need to measure my success with it somehow, some way. So the plan:

  1. Feacal calprotein test today. All done from my ostomy bag and send to pathology this afternoon. Results in a week.
  2. If these results are normal, along side my blood work, I can have my next Vedo infusion on Jauary 9th.
  3. A repeat faecal calprotein test in 4 months time at my next clinic appointment with him.
  4. He will then order a repeat MRI scan and see where we are from there.
  5. If all tests are consistently normal, he will stop Vedo and revisit if I flare up.
  6. After that, it is Nottingham.

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I am hopeful.
I am hopeful that my subtotal colectomy was as ‘curative’ as it could be in my situation.
I am hopeful that Vedolizumab has given me a good start into a long period of good health.
I am hopefuly that either Dr Andrew or Dr Moran have a plan if things go tits up. I hope they don’t.
I have the support network of my IBD nurses and the stoma team to keep me in check. Things will not get as bad as they did. Things won’t be missed.
My consultant did look crestfallen when the subject skimmed around August and my ostomy. I am proud I was brave enough to take the surgery when I did – not that I had much choice, I was in agony and delaying would have been foolish – but I am beginning to get annoyed at the guilt my team feel for me having to have it done. Like they could have prevented it. It would be lovely if hindsight was 20/20 but it isn’t. I can’t go back and see what if and maybe we should have… That isn’t the attitude I want to have about this. That is not how I look at my ostomy.

I see it as a second chance at living.

 

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