I had my review last week… I had my butt cheeks clenched for days considering I knew that my GI would probably not approve of my choices in holiday eating establishments. I had the worst feeling that my support person (my husband) would have his phone out showing my doctor that I was eating God knows what from the side of the road in Asia….
Fortunately he did not, so we just exchange the usual pleasantries which included me calling him a few choice names because he didn’t warn me about the change of protocol for bowel MRI…
I’m in this no mans land. I just went through 6 months of the most stressful circumstances of my life… my body went haywire, what looked like Crohns, wasn’t all Crohns. We saw that from the MRI… it’s there, they can see it, but it’s not like it was before. I’m in a holding pattern.
Here’s the thing that I’m a bit unhappy with… I’ve had liver problems with my maintenance drug Mercaptopurine (6-MP) from early days. My dosage was 100mg, then 75mg and now 50mg. It’s been a gradual process getting down to where I am – not because I’m getting better, but because the higher doses were being pretty problematic for my liver… How do I describe liver distress? Ok, so you’re fatigued all the time with just run-of-the-mill Crohn’s – that’s one of the major symptoms. Getting out of bed is a HUGE achievement. Those of us with financial commitments just get used to the fact we’re going to feel like that every day and we get on with it – because no one is going to do it for us. The fatigue you have with liver distress is mind numbing… it’s 4-shots of coffee and caffeine pills before 10am… it’s loud thrash metal on the way home from work to not fall asleep in the car… it’s making your excuses to all your friends about hanging out because you literally can’t keep your eyes open… Mine got so bad in 2015, I used to have this little area in my merchandise room at work where I had a pillow hidden… I used to go up there.. even in the un-airconditioned 50º heat and sleep through my 40 minute lunch break… no one knew… well, no one there really cares to be honest. Aside from the fatigue (or connected with it) it’s your usual brain fog – times about 1,000. I would get words wrong… or forget words that I used every day, it was common place and not all that great for a marketing manager… Then there was the symptom we just can’t describe… but our lack-luster description seems to sum it up perfectly – we just feel shit.
On the 50mg – I still feel a bit crappy – but nothing like I used to. It’s been an improvement in every area except my joints… they have degraded a frightening amount in 18 months. It seems the higher dosage was indeed trashing my liver, but keeping my joint involvement in check at the same time. I’m now in a great amount of joint pain constantly – and on a daily pain relief regiment for it. It’s really hard to explain but it’s like… injuries… all through my hands, elbows, back and feet, that just never get better. I can’t make a fist anymore or grip things. That has all happened in 18 months and it’s a terrifying thing.
We discussed going back up a dose (a decision that isn’t made lightly because of how bad it makes me feel) but it was quickly ruled out with last months blood work showing my liver enzymes on the very high side of the safe bracket… I cannot take any more Mercaptopurine. So I’m back off to rheumatology and pain management to try and figure some new strategies out.
This is what Crohn’s actually is to me… doctors treating the disease and breaking something else… that they then need to fix, which breaks something else… and so on and so on. I feel like we’re always chasing either the disease or the side effects and damage from the treatments.
Am I glad I have these other services to help me – unspeakably so. Sometimes I feel crazy trying to explain the pain I’m in – because it just sounds extreme… but then my doctor smiles and tells me “it is extreme, so let’s just work on getting you good enough to get on your next flight”. He gets it. I’m lucky he gets it.
So yeah, let’s work on getting me good enough to get on my next flight – destination still undecided.