As my job contract ended, my problems with my Crohn’s started to really take on a life of their own.
Infliximab was scheduled for March 30th; yet somehow got cancelled and I didn’t get told – strike one! At this point I had bee on MXT for a couple weeks and starting to feel really sick. I was on the cusp of the usual eight week gap between infusions, so I knew it was only going to get worst before I actually managed to get another infusion booked in. Luckily, after much pestering of the nurses and consultants secretary, I got one for the morning of April 14th – TWO WEEKS LATER and two days before my 27th birthday. I just had to survive until then.
Between that time, I would loose another 5 kgs – taking me down to 89kg, my lowest Infliximab weight – suffer from an extremely bloated abdomen, constant trips to the bathroom with watery, sometimes bloody and mucus filled BMs, hardly eating or drinking because everything hurt and no painkillers were taking the edge off *at all*. Despite that, I still managed to make it in one piece to my infusion on the 14th.
This infusion I was treated with alot of care. There was a new nurse overseeing the Infliximab – thank goodness for more staffing! – but it did mean I was watched like a hawk. After they took my BP and weighed me – almost gasping at how much I had lost since my last visit (10+kgs) – they asked me about my MXT and folic acid regime. I take 20mg of MXT on a Saturday then 5mg of folic acid on Tuesday, Thursday and Friday. I can not alter or stop this regime without a consultation with my GI. 20mg of MXT doesn’t sound like a lot, but the maximum dose is 25mg, and even at 20mg it was mucking me about; I was forgetting to do the simplest of tasks, I had trouble remembering words and after taking it I would be useless, needing at least a hour nap to feel marginally better. On top of that was the nausea, which was adding to me feeling even worse. But I persisted. I still am, reluctantly.
I was closely monitored throughout my entire hour hooked up to the infusion pump. The two nurses thought I didn’t hear them, but I was “more likely to react”, given the addition of my MXT. The hope was, the extra two weeks of MXT in my system would mean the Infliximab would now be working abit better than before. I didn’t hold my breath.
Apart from being the shortest time I’ve *ever* spent at an infusion, it was pretty uneventful. I went home and slept off most of the pain, hoping some how, I would wake up revived by the medication like I used to be. Sadly, it would be a couple of days after my birthday I would feel any better.
Those days were wonderful. I had a good week at the end of April where I was able to function at a some what normal capacity. I applied for jobs with gusto and tried my best to see the positive in my current situation. I was eating abit more, able to finish a meal some nights, wanted to go out and not be cooped up in the house all day. But after that, it all started to come crashing down, gradually getting the pain return to my abdomen, going to the bathroom more and more, unable to feel motivated and was so fatigued. Luckily, my follow up with my GI was a couple days away.
This appointment I went alone. I was so tired by the time I got to the waiting room, I was hoping for a delay so I could have a little rest before having to explain how rubbish I was feeling. No such luck, he was running on time and was unbearably perky for a Tuesday afternoon. My weight was still going down – 88kg – and after discussing my clinic picture, he sighed. I think he was defeated. “You’re my most complicated case I have here”, he said. “I’m not sure if that’s a compliment or a problem”, I replied. “It means that I’m unsure on how best to treat you now,” he said “because we aren’t left with many options if we take you off Infliximab. But I want to give this treatment plan a good going before we call it quits.” Oh crap. “What does that entail exactly?” I asked, hesitantly. I wasn’t ready for this to be the end of my Infliximab journey, but I knew that adding MXT wasn’t making much of a difference, and he was just trying to prolong this treatment plan as much as he could, in good faith.
“It means doing the next two infusions as planned with the MXT dose as it is. After that, we can increase the MXT to 25mg and see if that helps on the fourth infusion. If that doesn’t help, by then we’ll hopefully have Vedolizumab and can try that. Failing that, we are looking at a referral and that could be the Bone Marrow Transplant. In the mean time, I need another MRI to really determine how bad it is, especially if you’d like me to refer you elsewhere.”
It sounds like he is giving up. I know it sounds that way, because my parents, partner and close IBD friends, think this is what is happening. I just think he doesn’t know what is best. It depends on me, the patient, and how much I trust him. Do I keep the same treatment plan until the very end? Do I call it quits after the three we planned? Do I push my body through Infliximab so I can get the new drug, Vedolizumab (currently, Vedolizumab is “in development” as a treatment option and hasn’t been approved for use in CD by NICE)? Or do I have my scan and get referred?
What you don’t want when you’re unemployed is to be unwell.
It meant I had some decisions to make.
Sorry, it means I *have* some decisions to make.
My next appointment with my consultant is in three weeks time, four days after my next infusion – which has just been moved back a week, due to lack of staffing (you can’t win every time, huh?) – where I need to be assertive. I’ve made some decisions but I still need some advice; his. I’ve put my body through alot this year, and who knows how much of my current predicament is linked to stress and un/employment. All I know is that what is happening now is not good. I can feel it in my gut that it is only a matter of time; and ignorance on my half if I start to give up on myself, before something happens to force my hand. I just know that who I am now, isn’t who I want to be. This is not the quality of life I am willing to settle for. So maybe I need to make a strong and powerful decision that will benefit me in the long run. And maybe that is surgery. But first; a referral to another GI.