Review of the last 9 months on Remicade and how it’s helped me achieve remission from Ulcerative Colitis.
I hate when people ask me how I’m doing with my illness. It’s not that I hate people (for the most part) or that I don’t want to share things about myself (obviously I have no restraint) but mostly because I really don’t know how I’m doing. Right now I’m a month into my remicade treatment and I’m probably 90% healthy, but some days I’m perfect and other times I’m worried about something or feeling sick. I read something a couple of years ago about people with IBD getting ‘toilet anxiety’, where they were worried about going to the toilet because of what might happen – and I didn’t get it. At the time I was in remission and had no worries, a good serving of naivety had me believing that I was taking magic pills that got rid of my colitis and things were easy. When I was flaring up I was 100% in the wars so there was no anxiety there either, I had nothing to worry about as I was already at rock bottom. But now on remicade I’ve finally got it, because I don’t trust the medication and so far it hasn’t cleared me 100%. I’m sitting here anxious 24/7 that they aren’t going to work, I’m worried about getting sick in Nepal because I’m not perfectly healthy, and I’m terrified that this idea I had of remicade being a wonder drug isn’t going to pan out. I hadn’t planned on this not working, as stupid as that sounds. I know it will probably be different when it happens but right now surgery sounds like the worst thing on Earth, I don’t have the sunny disposition others with IBD have in that you get cut open and everything is great. I wanted the remicade to work for at least 5 or so years so I could travel, hike, dive and do everything I love before the inevitable cutty-bowely operation that I dread so much. It’s hard reading peoples accounts of how good it is to get surgery for colitis because I just can’t relate right now, it sounds terrible. I’m terrified of travelling with a bag, dating with a bag, working with a bag and generally living with a bag for the rest of my life – I want to put it off as long as possible.
And so comes the anxiety… If anyone was wondering yes anxiety most likely makes IBD worse, as it goes in hand with stress. Not ideal to be stressing about IBD and thus causing worse IBD but that’s how our funky brains are wired to operate unfortunately. I don’t know if everyone feels this way with IBD but it seems pretty common and I’d guess that yeh most will cop it. I’ve been pretty lucky outside of the colitis and haven’t faced any anxiety before, and now I don’t really know what to do to get better. I’m trying my best to ignore??? the anxiousness and stress which is pretty stupid but I figure that with more remicade I’ll get better and this whole anxiety thing is a roadblock to that. I tried meditation and yoga a while ago which I plan on writing about later, and that supposedly works but I don’t think it did much for me. So there you have it, is the remicade working? I guess. How well? Not sure. I’m 90% at a guess, but I’m anxious all the time because I’m not perfect and I don’t know if it’s going to get better or worse. The struggle is real!
In other news, training for Nepal is going well! I’ve been cycling 20km a few times a week on top of walking with my pack around hilly tracks nearby. We’re at $650 of the $2000 goal so if you’re reading this and have some spare change burning a hole in your wallet or feel compelled by the cause please visit the fundraiser and donate here. I’ll be documenting a bit of my training when it gets closer to the date so stay tuned for that if you’re interested in navigating some long distance cardio style training around IBD.