Going Medication free..? Is this *the* IBD dream?

I received correspondence from my GI yesterday, following my clinic appointment with him last Tuesday. It made for an interesting read:
I am sorry you came to separate surgeries, initially an extended right hemicolectomy and then a subtotal colectomy. We have still got you on Vedolizumab and I am not a hundred percent sure this is the right choice for you at present. In theory you have been completely down staged surgically and so it maybe possible to trial you without treatment.

Presently, under NICE, Vedolizumab was the last option I can provide without looking into trials. I note you have recently seen Dr Moran at Nottingham although I have not yet received any correspondence from this appointment.

From a pragmatic view point we can assume your Crohn’s has been fully staged. I think the easiest way to do this is a faecal calprotein now and a repeat sample in four months. If your faecal calprotein is under 200 I am happy to consider stopping the Vedolizumab and so this will allow us to consider re trailing this drug in the future. It is probably also worth considering a repeat MRI at your next visit but this plan may change depending on the correspondence I am likely to receive from Nottingham.”

At first read, it seems to feel as if he is unsure of what to do and how to go about doing it. The fact that neither myself or his department have not had any correspondence from Nottingham – of which my appointment took place on September 14th – doesn’t help matters. I hope that I relayed the correct information from that appointment to my GI. I’m pretty sure I did. He wouldn’t have gone along with it if it didn’t make sense, surely..?
All of the details of the letter I already know about, we have discussed my Vedolizumab before surgery and since, either with himself or my IBD nurses, but seeing those words “was the last option I can provide without looking into trials” bring its all home. I’ve been given an ileostomy because my colon was destroyed but my small bowel is still going to be an issue. And it’s already had all the medications. I’m at the end of the line, unless something else comes out. We know that Ustekinumab is coming out soon but it’ll be a while before the hospital’s NHS Trust certify it. So theorically, going without Vedolizumab – providing the tests come back within his expected ranges – wouldn’t be bad.
Which now begs the question:

What is my IBD goal here? Is it medication free or ‘remission’?

I put remission into quotes like that because, everyone has an opinion on what remission should be. Sara over at Inflamed and Untamed wrote an excellent post on it here. My GI even recoiled slightly when I asked if that was possible. I even used the word “clinical” before remission and I still got the recoil. I think expecting ‘remission’ is highly unlikely, just given my past medical history and my disease track record – I seems to be fine whilst on med but never for too long. I just want to avoid more surgery to remove more diseased bowel. So, not taking any medication would be the next logical place to go to. And I agree with his logic – we need something else in the bag for when things go tits up; hoping and praying it is a LONG LONG LONG time away before that actually happens, and we have more options than just the Vedolizumab.

NB: As I write this, Ustekinumab has just been approved for use in the UK by NICE. It will be a couple months before anyone at my hospital is on it, but there is hope, always.

There are hoops to jump through to get to medication free. I can’t just come off Vedo and hope for the best. I need to be tested to see if I need it or not. Of course, there is no blood test to find out how well I am absorbing or maintain the Vedolizumab like there is for Infliximab – testing for antibodies etc – they have to go on my poo test. Yes, from my ileostomy. And it has to be more than once because of having an ileostomy – the likelihood of two samples being the same consistency and time of day is difficult to predict, and I’ve only just finished my loading doses too; it could be too soon to tell anything at this stage. The big test will be the repeat MRI scan. I had two done this year – one in July which was a dud and then a repeat in August when they admitted me before the subtotal colectomy – showing active small bowel Crohn’s. If the repeat – likely to be roughly Spring 2017 – shows none of this, then yay, both surgery and medication have worked.

Coming off medication whilst it is working sounds mad, right? If its working, why not keep on it? Well, side effects for one. Two, I am likely to stop responding to it eventually and we need to keep it as a next step. Three, isn’t the ultimate goal to be without medication anyway? It’s not a massive inconvenience to go to the hospital for the infusion every eight weeks but such a big surgery such as this subtotal colectomy should give me back my life, not keeping me tethered to the hospital. I feel like they want  me to go without medication so I can finally go away and live.

But being without medication scares me. I’ve never been without something to control my Crohn’s. But I’ve never felt this well before either. I think I need to get use to the idea – I’ve got another 4 months before I’m due back to see him again – and I think it will do me the world of good.

I will have to stop using my medication / illness / condition as a crux, an excuse… Now, that will be the challenge in all of this.

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