.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month.
Oh how foolish I feel now.
February 2015 was horrible. I would still have my Infliximab but I had lost total response to it; I wouldn’t be tested and know this for sure until the spring. I would go back on steroids for a couple months before my consultant would give me MXT or even consider me having a second opinion at another hospital. I would feel the worst I would feel since my diagnosis back in 2011. It was hell. And it was only the beginning of a hellish year.
I sit here a year later, 30kgs (4.7 stone) lighter, medication free – unless you call the devils tic tacs (Prednisone) ‘helpful’ – and not feeling as if anything is better. Being medication free isn’t a blessing, for me I am here because nothing has worked. And I’ve spent a year fighting my hospital, IBD nurse and consultant to understand that I need something else. I’ve gone along with every plan they have produced – in order: try Methotrexate, increase the frequency of my Infliximab, have a MRI scan to check my bowel (especially the small bowel), try a new biological drug Vedolizumab, see another Gastroenterologist at another hospital, see a surgeon and now finally have a colonoscopy. Don’t get me wrong; some of these things have worked but only marginally. But all of this has drained me of energy. Far too quickly. It’s also drained me of a job. That was the final straw.
** Now, let me get something straight. I am all for fighting for my patient’s rights. I am happy to take my doctors’ advice and I am happy to come to hospital have what needs doing done. I hope I am a good patient that way. But what I can’t understand is how long this process is taking. Especially waiting for a scope to be done. Whilst being on steroids! Whilst waiting to see the surgeon again! And waiting to go back to Nottingham! Whilst having no idea about how to keep a job while sick either. **
I think I am fed up. Actually, I know I am fed up because I just want fixing. It’s been too long feeling like this and with the Vedo leeching out of my system sooner than I know what to do with it and the steroids just making me feel more bloated and in more agony that I knew was possible, I’m left feeling ironically deflated.
I see my consultant next week for what was proposed to be a “round up” of what appointments have happened since the start of 2016 when this was booked in December. I’ve seen two different doctors since and have written confirmation of what was discussed at those appointments. What has happened, in addition is my Vedo has finally failed – I’m caught between feeling grateful this is now finally real and we can begin planning but feeling so scared I’m going to suffer so much without anything but Pred for comfort – and I’ve lost my job because I took “too many” sick days. Terrific.
But what needs discussing now is a couple more pressing issues:
- Can he sign me off sick? Or deem me too sick to work?
- What is the bloody point of the steroids? Are they going to mask the true results of my scope in early March?
- Do we have an agreed plan on which to implement once my scope is done?
- Does this definitely mean surgery? I can’t see the clinical trial being any better / quicker at this stage.
- Is surgery going to help? Is it worth putting off for a while (until absolutely necessary)?
In the mist of all this, I am dealing with dreaded Pred side effects. Having taken Pred before, many times in fact – like most of us, I imagine – I was prepared. Well, as much as you can prepare for a metaphorical shit storm. They really are the devils tic tacs. I feel, look and probably exude grumpiness. I hate it. I sort of hate myself a little bit. But I know its “temporary” and it’s not me.