The Crohn’s Saga (to date)

When I talk to people, I speak freely. I open my mouth, and words come – thoroughly rehearsed, to a point. Every time I tell my mirror about my life, it’s a slightly different rendition of the same song. This is how it goes.

In high school, I was a swot. I went to a posh school, I was a high achiever, I was a musician. I didn’t even think to be rebellious until my last year, and my rebellion was not of the extreme variety. Most of my free periods were taken up with scholarship classes, but swot that I was (am, at heart) I had far too many, and three sessions overlapped.

So on occasion, I would tell art history I was going to French, French I was going to Spanish, and Spanish I was going to art history, and spend the fifty minutes feeling guilty while scribbling rambling poems in my binder instead. I got a second piercing in one lobe. That was my acting out. Continue reading The Crohn’s Saga (to date)

We interrupt your regular writing programme for an IBD-flavoured update!

Ew. I don’t even want to think about what something IBD-flavoured would taste like. 

Yeah, let’s not go there.

Instead, let’s go onwards from shitty titles (HA!) and examine the matter at hand. It’s been a while since I made a health related post, so here’s an update. Maybe this radio silence led you to believe that all was well in the Raw Library intestinal tract? Sort of. Not really. I wish.

See, as I’ve mentioned before, I’m on an uber-cocktail of meds for my merciless colon’s deathwish. No prednisone anymore, thank god, and I don’t think I can handle that jandal again any time soon. As much as being super sick with colitis symptoms SUCKS, at least I understand exactly what’s going on, and the only mental involvement is frustration and pain synapses firing. On pred, sometimes you don’t know which freaking way is up. 20mg, and my brain loses its ability to think rationally. Meltdowns, as mentioned here. The weight piles on, the face blows up – I’ve only just gotten to the point where I think I’ve lost the moonface swelling. But no prednisone doesn’t mean anything else has eased off, oh no… I’m still popping the mesalazine and azathioprine like a champ, and going in like a good little sick girl to get my infusions every eight weeks. And I’m still not better.

At this point in time, I’m kind of already scraping the bottom of the barrel. I know that I’m not being quite as careful with my eating as I could be, in terms of avoiding trigger foods, but at the same time, on days when I do avoid the naughty things, and when I manage to soldier on without coffee, I still have aches. I still don’t feel right. I hate hate hate it.

At this point, my bathroom trips are still probably already greater in number than they would likely be if I had a j-pouch. So it’s hard to find a reason why I shouldn’t just tell me GI team that I want out, when I’m all out of meds that I can try (I know some UC patients have success with Humira, but it’s not available for colitis patients in NZ, only CD/RA/AS ones). If they said to me tomorrow, ‘Briar, we can book you in for surgery, what say you?’… I think I’d say yes. It’s more than a year since I started coming to terms with the fact that it was a real possibility. 

So that’s where I’m at. I’ll be back with more details in a few weeks, once I’ve had my next infusion and next GI appointment. Who knows where I’ll be at then…

the peculiarities of ‘remission’

Remission. It’s a word I always see thrown around on IBD forums, along with flare. It wasn’t until the last six months or so that I even heard the word ‘flare’ used by any medical professionals I deal with… mostly because it was a foreign concept to me. The internet seemed to be full of IBDers who experiences ups and downs – and whilst I certainly had days that were worse than others, the fact that post-diagnosis (December 2010) I never had more than a couple of ‘good’ days meant that there just wasn’t any point talking about these supposed swings and roundabouts. I had active disease, and it wasn’t going anywhere.

I don’t know if I’d be labelled as being in remission yet, but it’s certainly the closest to it that I’ve ever been. My insides aren’t 100%, but that could be more of a lingering IBS type thing, rather than full-blown UC. The strange part is, it seems so hard to imagine the really bad days now. Time heals wounds, as they say, and when I think about my disease, I have to remind myself that actually, yes, it is very serious, and more to the point, I need to seriously remind myself that there are absolutely no guarantees that my current course of medication will continue working for a protracted period of time. A few months ago, I was convinced that I would be getting a colectomy some time in 2013. Succumbing to prednisone – and possibly the effects of infliximab, hard to say yet – has turned all of that on its head.

But, as I say, it’s not necessarily forever, and whilst I’m therefore less likely to be telling myself to mentally prepare for it, and trying to visualise what my stomach would look like with a stoma, trying to remind myself that I’m in a position where I’ll be cared for, loved and looked after regardless of whether or not I have a large intestine… I have to keep it in the back of my head. I can’t let myself stray into the potentially false sense of security that my medication is giving me, because whilst I’m currently down to 3/4 BM a day, and everything seems to be fairly healed inside (my inflammatory markers are looking good too, first time I’ve ever heard that!) all it takes is for something to go slightly off kilter, and I could be thrown into one of these flares, and if that happens – if infliximab and prednisone stop doing their thing – that does mean surgery, and that does scare me, despite what I may project.

For now, though, it does feel nice, being able to leave the house and not worrying about which route I decide to take, or whether or not I have enough energy to walk fast enough to save myself from potential intestinal trauma. The psychological side-effects are hopefully going to get under control (I’ll post more about that in a day or two). In a month and a half, the worst stress for the year at work will all have passed, my boyfriend will long since have returned from his travels. And, more to the point, I should have some idea of whether or not everything’s going to keep working for the next while.

So KBO, I suppose!

on mental health

For quite some time, I’ve been aware that I probably need counseling, or therapy, or whatever you want to call it. As much as I have unhealthy intestines, I also have a brain that doesn’t cooperate at times, and it’s only been in the past year or so that I’ve acknowledged that this is probably a sign of depression or some other issue with my mental health.

I count my lucky stars that I have a partner who is there for me on the approximately fortnightly (but it can vary) occasions that I completely break down. Sometimes I can get it under control reasonably quickly, and generally prescribe myself an early night (after the boyfriend himself has prescribed many cuddles and reassurances), but other times I just can’t shut it down. Such an occasion occurred early this past week, with the added inconvenience of the boyfriend not being in the country currently. I sobbed, I explained to an invisible therapist in my ceiling just why everything was so awful and everything that I had done wrong and why I probably deserved it, too. I lay on the floor and couldn’t bring myself to do anything else. I was broken.

Maybe in this instance colitis actually has benefits (ha), because it was only when I had to go to the bathroom that I managed to pick myself up from the floor, and attempt a little normalcy. But by the same token, whilst I can’t know for sure whether or not I would have ever developed such issues if I didn’t have UC, I can say for absolute certain that it has exacerbated the problems an unfathomable amount. Consider, after all, that one of the on-going stresses of my life is, not only worrying about the limitations of UC symptoms, but the extremely controlling nature of the medications that I’m currently on. When both the boyfriend and I are constantly plagued by wanderlust and a desire to get out there, I’m being plugged into an IV every eight weeks, for drugs that no other government but my own would provide for me. And I’m not even totally healthy yet. Even typing this out now, I’m getting a little anxious tight-chest action.

It’s terrifying to me, both the idea of ending up alone because my disease limits me in such ways, and the idea that I may never be able to do the things and see the places that I want to, whether I’m alone or not. Or the idea that I’ll go to these places whilst healthy, even if it’s only between infusions, and then suddenly I’ll flare up in the middle of god-knows where, and be financially and/or physically ruined. Because UC is hardly affordable to tack on as a covered pre-existing condition when you’re paying for travel insurance.

And the anxiety – if you understand the delightful specifics of severe UC, I’m sure you can see how constant anxiety is inevitable. And all of these bundled together with an already imperfect mental state + physical disease including brain-sucking anaemia… is it any wonder that my BA really did turn out to be bugger-all?

And now, prednisone, which was really what inspired this post. So far, it’s the worst/best drug I’ve ever taken. I’m pretty sure that I can attribute my current kind-of-remission almost exclusively to the prednisone – I’ve only had two infliximab infusions so far, and that stuff typically takes a while to kick in. My symptoms are certainly better than they were a few months ago – for one thing, I don’t have to take Tramodol just to get to work without my insides screaming at me constantly – the pain associated with the colitis is pretty much gone, for now. The blood is gone. Frequency and urgency are still up compared with a ‘normal’ person, but that’s probably partly psychosomatic, since my brain and insides are so used to ‘gotta do this NOW, buddy’.

But. Even though I’m on a low-ish dosage, I’ve encountered some side-effects none-the-less – though I’ll admit, since it is a low dose, again, it may be partly psychosomatic. And the added mental stress of the boyfriend being away hasn’t been great timing, either. But I’ve been decidedly more… down more often since starting the pred. I’ve had insomnia, at times, I’ve definitely had the increased appetite and weight gain (especially perfect timing, thanks Christmas!) – which in turn has made me feel more self-conscious aaaand depressed!

So it’s a great cycle. But I start tapering the prednisone on Tuesday, so we’ll see if the symptoms stay on the down-low or not… I’m sure I’ll be keeping you informed.

In the meantime, as a combination venture – both making the most of minimal symptoms, and trying to keep myself cheerful, it’s time to wash the night’s worries off, and go on a bit of a road trip with people I don’t see nearly enough these days.