I've always tried to be very positive about my condition and my journey, right from being diagnosed. That's not to say I haven't had bad days - I've had plenty - but on the whole I've tried to pull as many good things as possible out of my illness. Without having had UC, I would not be half as strong, determined or confident as I am today; I wouldn't have met so many people who have become amazing friends to me; I wouldn't have had some of the opportunities I've had in terms of work experience or spreading awareness.
Most days, I can handle everything that happened, dismiss it almost, like it was a bad thing that happened and now everything's back to normal and life goes on. Except it doesn't. Right now, I'm probably feeling the lowest I've felt about my condition for a long time, years even, and I've come back to my blog in order to vent some of those feelings here.
I've started to experience complications with my J-pouch that are having an impact on my quality of life. Not anything like UC - don't get me wrong, I don't regret the surgery I've had for one second - but I guess in my head I always assumed that having a J-pouch would be a 'fix all'. I'd be back to 'normal', albeit 'new normal', and getting on with 21 year old life like anyone else. Mostly, I do. But right now, after having experienced my first bout of pouchitis that's dragged on for a few months, on my second 30-day course of antibiotics (that apart from giving me irritating side effects doesn't really seem to be working), I'm pretty fed up. For the past week I've had stomach cramps, pouch cramps, frequent trips to the toilet and feeling really fatigued. I feel kinda breathless climbing stairs and things - wondering whether that is due to the steady bleeding I've been having intermittently since takedown - so soon I'll be going for a blood test. Once these antibiotics are finished, I will start a course of probiotic medication that I have to take indefinitely.
None of this is really a big deal. To say I had an emergency colectomy and landed in HDU, followed by a routine J-pouch construction that led to a massive hemorrhage - both occasions that were touch and go - this should be nothing. Except, it isn't nothing. After all that happened, all the crap that I got through, I at least wanted the end goal to be a disease-free life - but it's not. Here I am, having had three operations and I'm still sick. I'm still being affected by this thing and sometimes, just sometimes, I'm fed up of it.
I don't like the fact that I'm 21 and have spent the last 3 years of my life bouncing in and out of hospital. I don't like the fact that pouch surgery has left me with a 30-50% chance of infertility. Or that my body will never function in the same way it used to again. I don't like having to watch my diet, or stop eating at a certain time before bed if I don't want to spend the whole night on the bog. I want to be able to get a full night's sleep without loading up on Loperamide and feeling bloated the next morning. I don't like that everyone around me thinks I'm 'cured' now - that I'm back to normal - because I'm not. But on the flip side, I don't want people to define me by my illness. I just want one day where I have the health of an average 21 year old girl.
Obviously this is ranting about nothing - and no amount of ranting can take these things away. Lots of people have worse situations, and in terms of IBD I'm actually doing very well - I no longer have 'active' disease, and my quality of life is greatly improved since when I had UC. But sometimes, everything that's happened overwhelms me and I don't feel so positive anymore. I think everyone has a breaking point and sometimes I tip over mine.
I think overall I have a deep-rooted worry that this isn't over. Every time I become dehydrated, I have to go to A&E for rehydration - every medical problem isn't a quick 'hop to the GP and it'll get fixed', it's a 'let's go for loads of tests/spend a night in hospital' kind of problem. This has happened on my 21st birthday. At Christmases and New Years. Nights before important university days. On friends' birthdays. I've lost count of the times I've had to go to A&E for one thing or another. And yet I constantly feel like I'm being a nuisance, like I'm wasting people's time - so I often leave it as long as possible before I seek help (not wise) because I don't want to be a hassle. And also, I don't want the hassle. I'm sick of being poked and prodded and treated. If this pouchitis doesn't clear up on these antibiotics, I don't know what the next step will be, and that scares me.
I feel myself wanting to apologise for writing something so out of sync with my usual upbeatness. But also, I think it's important to recognise that this is the nature of IBD. Some days, you're fine. Some days you don't feel sick, you look well, you can participate in things like anyone else. And then other days, you feel horrendous, can't do things as normal and wonder what on earth you did this time to get back into this situation.
I will be fine - and I'm sure things will clear up in their own time. I'm working at full-stretch at the moment, working full time and preparing to apply for further study after graduating from my current degree, so I'm aware I'm exhausted and not my usual self. But while I do not regret getting my pouch, and wouldn't trade it for anything, I have to accept that right now I'm not feeling up to speed. Hopefully, in not too long, it'll get better.
