I haven’t written anything in a while. Truth be told, I broke my laptop. I’ve got internet access on this iPad thingy, but I don’t like ‘typing’ on it. You don’t get the satisfying clickity click of the keys and I’m holding the muscles in my fingers like somebody having a cup of tea with the queen.
Really my fingers ache quite a lot, and I did a nice slice injury on my index today, thanks to a matrix band.
Ok here’s the scoop, a few people have asked me how my appointment with the doctor went, I went to discuss surgery with him, a total colectomy.
Unfortunately, I didn’t get to discuss surgery much at all, it was more going over my history, updating him about my medication, how my infusions are going, correcting him when he said I… Blah blah.
It’s not that I don’t want to blog about it, or update people about it. It’s just hard enough to explain in real life, verbally, let alone writing it down, which is why I’m going round about the houses in trying to explain.
So, positives. He understands my need, entirely, to come off azathioprine. He understands my reasons, that it makes me feel rubbish, fatigued, drained and nauseous, and never fully myself. And when I come off it I feel great, energy-wise, but start to flare.
Positive number two, he’s made an appointment for me to speak to the surgeons, which is all I want, to find out about it all, and have someone answer my questions.
Negative number one. He says the surgeons will be reluctant to operate on a colon as healthy as mine. Showed me pictures of my most recent colonoscopy, beautiful, healthy, lovely veins.
Positive number three. I am very strong willed, and sure I can explain that intentionally causing a flare by coming off azathioprine is reckless and stupid, downright dangerous and I refuse to go on steroids again, sure I may get denied this luxury of being in control when they say “steroids or bleed to death” but let’s just pretend for a moment. Not to mention being on steroids will make healing after surgery about a million times worse / slower / more difficult.
Negative number two. My doctor thinks that my infliximab infusions alone will be enough to prevent me bleeding out, and has even offered to up the frequency of my dose to every 6 weeks (currently every 8). The thing he is forgetting is that I know my own body a lot better than him. I’m not saying it doesn’t help in combination with the azathioprine, but that’s all it’s doing, helping. Not preventing me flaring.
Positive number four. My doctor is very kind, always takes me seriously, and does his best to help. I have no doubt he is professional, as all doctors should be (but many aren’t) in that he has my best interests at heart. Sometimes even more than I do.
We have devised a little action plan between us. When I’m ready (which would be now if it weren’t for the fact I have an exam so am kind of forcing myself to wait till that’s over). Anyway, after my exam in June I’m going to come off azathioprine for a week. Then switch to 6mp (which is basically azathioprine in a slightly purer form) to see if that helps with the side effects. If I still have side effects I can come off that, and see if infliximab infusions alone are enough to stop me flaring. All the while, being prepared that if I do start to flare, rather than putting me on IV steroids, which he doesn’t even think would work on me after my experience last time, anyway blah blah (see complex) then they can operate.
So sort of elective, but not quite as elective as elective. More like, this is electively necessary.
I am busy mentally preparing myself for surgery. Will see what the surgeons say.
We also talked a bit about having a reversal (j-pouch), he thinks this will be possible for me, but is not successful in 15% of people and they end up going back to a permanent ileostomy (bag for life). He also asked me if I wanted kids, as in, myself, not a girlfriend, because j-pouch surgery has risks of affecting ability to conceive. Anyway, that’s all stuff I want to talk about with the surgeons.
Actually, being mentally prepared for life after surgery is more what I’m doing, not being prepared for surgery itself because that’s a whole other thing, and I’m just going to try and ignore that part. Just pretending I’ll wake up and it’ll all be done. I don’t want to think about being sliced open. Although, I try to think of it in the context of getting a cut, slicing yourself with a knife, even self-harming. Like, it is not that scary. It’s just a normal thing, flesh is cut, and it heals.
Just look at my index finger.
And pain, well, I have coped with pain before. I don’t know if it will be worse than those months of agony. Screaming on the toilet. Rolling around on the floor.
I am also thankful that I know a lot of inspirational people, that have gone through it before, and are supporting me now as I go through this. I know for a fact I couldn’t even consider this without them.