“What a waste of my time” : something I’d spent most of last week, in the aftermath of my routine clinic appointment, saying to myself.
I attended the hospital last Tuesday, after hearing of my approval by my current consultant, his replacement and my IBD nurse for me to start Infliximab, for my already scheduled appointment. I was under the impression, from all the conversations me and my nurse had leading up to my appointment, that my treatment plan was up for discussion. I didn’t even see my GI, I saw some other doctor from the “team”. He had no idea of my biological treatment and was more concerned that I wasn’t on any medications. Me too buddy, but that is why I had to be double scoped and waited so very long, all through the summer and into autumn, to get the go ahead for Infliximab. That waiting wasn’t for me to start it, it was for being able to fit the criteria for the NHS trust to APPLY for the funding for it. There was another wait before it would come back and another before I began the infusions. Meanwhile, I would be expected – by both my medical team and myself – to continue on until then, suffering with my symptoms, working and organising items for the Crohn’s group. Alot of demands and responsibilities on my head, that are all mine, and not enough time to recover and relax.
Infliximab didn’t even come up. He didn’t even know, just wrote a script for Pred and send me on my merry way, a 6 week wait to come back to see how I was doing. WHAT HAPPENED TO ALL THE QUESTIONS I HAD?! Despite having already been a biological treatment patient before, I was concerned. I wasn’t a couple of days diagnosed anymore, I am hitting the two-year straight mark and I’ve got more complications since then. My primary concern is the two narrowings in my bowel (in the join of small to large and then above the splenic flexure) and how they will react to the treatment. They can either stay the same, be fine until they become problematic; or they can be made narrower because of this treatment. As I see it, surgery will come to me (though this is something I knew from the start, it is common for surgical intervention for almost all patients within 10 years of diagnosis) but I am desperate to have my life back. These last 9 months have been awful and I’ve struggled so much. I’ve got so much will, because I have continued to work and taken on volunteer roles throughout the year. I’ve not had enough time for just ME and it’s showing. I am struggling to hold it together and get my head around this.
I finally got all my questions answered yesterday with my IBD nurse at her clinic session, I left feeling reassured and able to get through the next two weeks before my first infusion on Nov 11th. It is a while off, but I am determined to get to there without too many problems. Though, I may have spoken too soon, because work was tough today. I was on the painkillers and feeling rough. Thinking I’ve gotten a cold from someone at work, and made worse by my lack of BMs lately, I hope it doesn’t get worse. Thankfully, tomorrow I am off work, so I intent to rest.
I had to explain my Infliximab schedule to my manager yesterday afternoon and tried to be as direct and simplistic as possible. Just the important details and leave it as that, I managed quite well, until I got my December appointment (the 23rd, the Monday of the Christmas week) and she queried if it could be rearranged. No, once the schedule starts, it has NO FLEXIBILITY. IT IS SCHEDULED FOR THOSE DATES BECAUSE OF THE TIME NEEDED BETWEEN INFUSIONS. My health comes first, and it always will. I was tempted to suggest that I don’t have this treatment and I go on as I have been, with only Imodiums to get me through the days and weeks, until my bowel decides its had enough and leave me bed ridden and in need of hospital intervention. I could be off for weeks, I could be off for months. This is my only option at present and if it at the end it leads to surgery, so be it. I shall be off work and I have to deal with it when it comes to it.
But it brings up the concern I have with the lack of people’s understanding – more of common decency, of late – for other people’s health and their well-being. With something like IBD, no one ever sees the extent to which my body is scarred and inflamed. No one else sees the pain I go through when I’m in my “office” nor do they know of the amount of frustration my days come along with. How utterly fed up I can get with all this crap I am forced to deal with. Most of it is second nature now, and I have become quite conformable with my condition in all its entirety, but I am always and continuously surprised at people’s lack of care and compassion.
I know I am only 25, believe me I am painfully aware of how young I am to have gotten this lifetime condition, and that I want to be as normal as I can be whilst being unwell more often than not, but how difficult is it for people to try to understand? I know IBD education is far from what it can and will be, and I am a small cog in the engine that is driving that forward, but come on! Can we just have some compassion for others? How difficult is it? How little am I asking for? Why can’t I be given more than just a glance, just slightly more than a moments thought, when it comes to it?