January 2016

The beginning of the year is always difficult.

I have, for the years I’ve been diagnosed with Crohn’s Disease, been able to avoid any major problems at the festive period; even when I was first diagnosed and just having started Humira without a clue how amazing it would be.

So I came into January unsure; of what this whole year would bring me, how quickly I would find a new treatment plan and how rubbish I would have to feel to get to that point.

On NYE I got my appointment to see a surgeon to discuss – very briefly it now seems – options if I didn’t response to Vedolizumab. Twelve days into January I would find out they would need to remove my entire colon and give me an end ileostomy if my rectum was diseased or a sub total colectomy if it wasn’t. This would all depend on a colonoscopy. I still haven’t had any confirmation of this happening any time soon. Time to hit February with getting this sorted.

Before this happened I had my Vedo “slug” infusion – that took place on week 11 of my treatment schedule. It would happen on week 10 but with the Bank Holidays and set infusion dates, it was a week ‘late’. I gratefully took it, knowing that it could give me a boost and push my body into some sort of acceptance and start working with the drug, instead of against it. I still had difficulty getting cannulated; which has only gotten worse over time and is becoming a struggle with the Vedo. I’m sure this will still be the case today at my 5th infusion.

I have also been to Nottingham to have a second opinion and found out I’m not just looking at surgery at my next option but two more medical treatment plans too. But guess what?! They are all dependent on a camera investigation! So it’s even more important to push the bloody Endoscopy department to book me in. Not knowing it just delaying my appointments not only here at Good Hope but also at Nottingham. I waited 18 weeks to see my doctor in Nottingham and I know I won’t wait that long again but I don’t want to leave it so long that I get sick again. Today is probably going to be my last Vedo infusion – if after five infusions and up to week 14 there is no improvement made, it must be terminated – and the prospect of being a month down the line from today and feeling how I feel today exactly four weeks since my last infusion; I don’t want that. I just can’t do that. I won’t let it happen. So as much as I will be annoying people to get stuff organised and knowing they don’t get many people ringing up to move up a colonoscopy – I guess alot of people try and push it back to avoid it because, let’s face it, it’s not pleasant at the best of times – I cannot stress how much I just want to get onto something new and feel better again. And it is all dependent on jumping through hoops and I need to let them see what’s going on!

So you can imagine, this is a stressful time. I’m trying my best not to get worked up and frustrated with everything but its hard not to. At this point, almost a year since I first started having to go back to the hospital on a very regular basis, I just want to feel well again. I want to be able to not always feel so tired or unhappy because I’m in pain because I’m unsure of what I have or haven’t done to my body. I want a medication that works or a surgery that relieves my level of pain and return me to a good quality of life. I want to feel normal again.

February; I am seeing my consultant again to discuss my treatment options at Nottingham – paperwork should have been sent to him and read by my appointment on the 23rd – and I am bloody well going to be having my colonoscopy this month too.

January felt like a trial month for me. I was hoping that I would feel better on that additional Vedo. But considering how anxious I felt after my surgical consult and leading up to Nottingham; it hasn’t been all doom and gloom.

Now, if I could just settle down into my new job role and avoid any major issues with Vedo ending, that would be grand…

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