Okay, so, here’s the tale from my updates post that I started to write, before realising it was waaaaay too long and it would need its own post. I always think “oh, nothing much happened,” and then I start writing and actually A LOT HAPPENED. But, spoiler: we’re still no further forward than we were six months ago. How can that be, I hear you ask? Well, let me start from the beginning..,
I’d asked my dad to accompany me to my gastroenterology appointment almost as soon as it was scheduled in June. Clearly, I’m making no headway on my own, and – as demeaning as it felt to admit it – he might take me a little more seriously if someone who saw me every day – and was a real, serious adult to boot. My baby face and tiny frame have always been barriers to my being taken seriously. The other night I was at a stand-up show, in my seat, and just before the show started, an employee of the venue approached me and asked me if I was on my own, and then asked how old I was, “because this show is 14+”. I am 20. Apparently, I don’t even pass for a 14-year-old any more. Disgruntled tangent aside, I knew I needed backup – so I brought my dad.
He was a fantastic aide. I was initially worried, because I haven’t had any of my parents at appointments with me since I was 15 or so. At the time, the reason I gave for wanting to go on my own was that, most of the time, doctors looked at them and not at me – and I let them answer all the questions, shrinking into my clothes like I didn’t want to be seen. Five years later, and I’m a lot more independent, but I had a nagging fear that if I ever brought one of my parents back into the consulting room then I’d turn into that shrinking 12-year-old, frightened and unseen, an object instead of a person. It didn’t happen, and he supported me perfectly. He knew what I was trying to say, even when it got all tangled up and stuck in my throat, but remained firmly in the background until I needed him. Thanks, Dad!
So I went in, determined to make my gastroenterologist see that I have been suffering an entire year on a drug that was clearly ineffective, and something had to be done. I have had my life on hold. I keep losing more and more weight despite my best efforts, I don’t have enough energy to get through a single day without napping partway through, I remain tethered to a toilet constantly, I am in daily pain and I am forced to live my life on the most restrictive version of a low-residue diet. In short, I went and laid out all the reasons I am miserable, and waited for his response.
It was not what I expected.
There was, at first, some defensiveness in response to my decisiveness. I understand that it isn’t his fault that I had spent a year on a ludicrously expensive drug without anyone checking it was even working. I listened to him talk about how the gastroenterology department has six consultants when it needs at least nine to run an adequate service. I listened to how the hospital thinks we don’t need even a single IBD nurse, despite pleading from the consultants, and how the service is so strained and people miss appointments all the time – although at this point he glanced back at my file and hastily added “although I see you’ve never missed an appointment”.
“No, I haven’t,” I replied smoothly. “I know how hard they are to come by.”
This… was not an encouraging start, anyway. At no point had I tried to apportion blame for the (TWELVE MONTH) wait I had endured, and I wanted no justification. I just wanted it fixed. So what can we do about it, now?
As it turns out, the long wait is precisely the problem. Now all the evidence that proved I was in a flare before starting Humira is too old. I have to endure another round of testing – waiting for more appointments, waiting for the results to trickle back to the gastroenterology department, waiting for yet another appointment to be made and hoping that I don’t get plain forgotten about again – before we can even consider increasing my dose of Humira or switching me to another biologic. My calprotectin in March of over 1000 barely even counted as evidence, apparently. My pain wasn’t a factor. I needed scopes, MRI – the whole lot. Again.
I admit it. At this point I broke down in tears. Not only was I exhausted, and facing yet another brick wall, and potentially three months or more before someone would finally make a decision about how to get me healthy, but I am still haunted by the experiences I had with scopes in paediatrics. So, with tears running down my cheeks, an embarrassingly runny nose, and a quavering voice, I made my last stand: I explained the reasons why I didn’t think another set of scopes would be useful. They are as follows:
- 1. I have, and always have had, small bowel disease. It has never ventured into my colon. My last colonoscopy was completely clear until they reached the terminal ileum. Having to endure prep, and then a scope, for the sake of seeing only a few centimetres of the area that is possibly affected does not seem like a worthy trade-off.
- 2. The only advantage a scope has over other imaging methods (when it comes to small bowel disease) is biopsies. I reminded my consultant that I didn’t even get that advantage the last time I had a colonoscopy, because my biopsies got lost before they were analysed, and we ended up with no results from them at all. Yes, I am still smarting over this loss, thank you.
- 3. Let’s face it: I haven’t improved in this time. I have only steadily declined. So even if you manage to see anything on the scopes, it won’t be a sudden spontaneous healing. It is quite rational to assume that things will only have worsened – because they sure as sunrise haven’t been treated enough to get better.
- 4. I am going to end up having an MRI anyway, because, as I mentioned, a colonoscopy won’t visualise the small intestine well. So why not start with the MRI, and if it shows an area of concern in the colon, then have a scope? At least then I will feel like the procedure might have actually been worth it.
- 5. I really, really, really just do not want to. I don’t know if this is PTSD or what, and at this point I’m afraid to ask, but an abject terror fills my chest when I think about having another scope. I start finding it difficult to breathe. I am dogged by a dread that I can’t name and that I haven’t felt with such intensity in years. It is a harrowing experience for me, and I don’t want to endure it unless I absolutely have to.
Thankfully, I managed to get through this list reasonably calmly, although I was gabbling by the end because I could see that my doctor was getting impatient. But I was determined to be heard for once. I knew that I wasn’t going to be leaving the room satisfied, but I wanted to leave it less dissatisfied than usual. To be honest, I was kind of surprised when he agreed with me. A colonoscopy may not be necessary, he agreed, and suggested a compromise with me: if the MRI shows definite signs of inflammation, we’ll avoid it. But if it’s inconclusive, then we’ll have to go ahead with it. I agreed. This seemed the most reasonable course of action to me.
So now we wait. I have the MRI on Saturday, and had bloods drawn to check my Humira levels a few weeks ago. I’ll give it a week or two, and then call up to ask about the results of both of those, and to ask for my next appointment to be booked – this will be with another consultant, because my consultant is going on paternity leave for a year. I don’t really know how I’m feeling about all of this – I think I’m beyond feeling anything now. I’m despairing of ever feeling anything different. I know there’s supposed to be a light at the end of the tunnel somewhere, but I can’t see it, and it feels like I’ll never find it myself. But in the meantime, I’ll keep trying to survive. That’s all I can do: survive until I can’t any more!