Vedo #5 – The Finale

Despite my best efforts, it seems my current run of Vedolizumab is over.

This is what happened at the turn of 2015 into 2016:

I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and severe aching muscles. Neither of which have completely gone and neither of which my consultant can fix, it seems. So I await the New Year and with it bring an early Vedo infusion – a full three and half weeks earlier than planned – to help try and increase my chances of this medication catching and bloody working. I so badly want to be the 1 in 4 that has it work but I can’t rest all my hopes on that. I need to look forward.”

And this was the state of affairs on my fourth infusion on January 4th:

From my Instagram @louisehelenhunt

It’s now been another four weeks; I’ve seen a surgeon and my second opinion Gastro in Nottingham. With all that new information and decisions to make – both now and in the foreseeable near future – I knew that my final Vedo infusion was going to be February 1st.

After having my cannula placed into the same vein that had already been used twice the previous weeks for two separate lots of blood work, it was all go. It seems my veins are just collapsing these days, despite my careful efforts to hydrate like crazy. I was pretty nervous about it being my last one; I knew my fate once my blood results were given to me: CRP was up to 40 and Albumin was low. I’d made no improvement in my bowels or any reduction in my pain or nausea. After discussion with my two IBD nurses about the appointment in Nottingham the week before, we decided to not continue with Vedo. It would be up to my consultant in his clinic – on Feb 23rd; three weeks away – and my colonoscopy to decide what to do next. I could get some steroids if I did become worse but this would not manage my pain nor my nausea. As sad as I am to have failed yet another treatment plan, I knew it was coming. With everything I now know about my possible plans for treatment, I’m just eager to get the ball rolling.

When I first started the Vedo back in mid-October 2015, I had finished Infliximab just weeks before and hadn’t taken my Methotrexate for about a month. It was a seemingly seamless transition onto my new medication. Even the MRI I had at the end of October didn’t faze me; I knew it was just to check my insides. But now that I need another, different check of my insides to decide which way we go with my treatment, this will not be so seamless. Far from it. So I am an anxious ball of frustration. Sorry to anyone I encounter in the coming weeks; I’m just fed up and I’m finding it difficult to hide that fact inside of me, buried deep within my smile.

I have today received my pre-assessment date for my scope. But no actual date for said scope. I’ve got all the patient information about the procedure, it would have been nice to have both dates in one go; like I’ve had in the past. If anything, this new system of booking endoscopy procedures needs a review. I’ve never had to chase a scope – flexi-sig, full colon or gastroscopy – before. Nor should I have to. I know they are unpleasant but for me they are part and parcel of my condition and a good way to get images of my bowel. Best way to get them too. This time around they determine if I go for the clinic trial or if I opt for surgery. And waiting is doing nothing good to my bowel.

I’ve concluded, however, that I need to deal with this one day at a time and keep hydrated to avoid more problems. And even typing this it feels so unlike me… and I know I won’t always feel strong and positive but feeling negative is making me negative.

So here, I am launching my “High Five Friday!” where I celebrate the small things in life; those things that make me smile, inspire me, and keep me positive and sane (as much as I can be!) The first one comes in two days’ time on Friday 5th February 2016.



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