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The Kiwi Colitis Experience – An Ongoing Saga

Ulcerative colitis messed up my degree/academic confidence (BIG TIME), has impacted my social life no end, ground my creative output down to nothing, and, more recently, broke my phone.

Oh, colitis

Maria von Trapp seemed to think the very beginning was a “very good place to start”, so let’s do that, then, shall we? Flash back to 2007, for a moment… my last year at a prestigious high school, came top of several subjects, won creative writing prizes, name was added to the honours board. Even back then, and earlier, I tended to take a long time in the bathroom, although that was partly because I was a chronic toilet-reader – I wonder now if it was a bit of gastric dysfunction too?

2008 came along, and so did my first year of university, and I’ll admit, I coasted a little bit, without the pressure I was used to from my school environment, but I still did very well, that first semester, at least. Somewhere halfway through my second semester, though, my digestive system started to get a bit funky. I’m sure you all know the drill. Blood in somewhat diarrhea-y stool was my first noted symptom, which I mentioned to my mother, and she said it probably wasn’t anything to worry about for now, if it didn’t stick around. I can’t quite remember now how frequent the blood was back then, but it didn’t go away, it still happened now and then. And for whatever reason, I decided ‘Meh. It’s nothing.’

Hindsight’s a beautiful thing, isn’t it?

Very gradually, it got worse. So gradual that I continued to not really think about it. I didn’t mention anything to my mum for quite some time, but I started getting to the point of having to run full-tilt for the last part of the 10 minute walk between my bus and my house (hour long bus rides = NOT colitis’ friend), and I guess she noticed (in around June 2010, perhaps?), or I mentioned it, and she said that I really should get it checked out. I nodded, and went on with my life. I hadn’t been to a doctor for quite some time, and as annoying and sometimes painful as it was… it was poo. It wasn’t a health thing, surely.

But in about September last year, I was having difficulty swallowing food and drink without serious pain. It was getting to the point (after a day or two of putting up with it) that I couldn’t put up with it, so I relented, and we went to the A&E one evening. Mum told me to make sure I told the doc about the diarrhea too. So after explaining my main reason for being there (he prescribed me Losec, it was just heartburn, or some such), I (with some embarrassment), mentioned my unconventional bowel habits. He was much more concerned about that, especially when I admitted to having had issues for about 2 years. He checked my eyes and nails for anemia signs (and decided that I wasn’t) and told me to go to my GP for further investigation.

Being as I was GP-less at this time, I went along to the student health clinic at my university (BLESS THEM), and booked an appointment. I was sent off for blood and stool samples to be taken, and a week later I was back, being referred to a gastroenterologist and prescribed high dose iron tablets for my severe anemia (my hemoglobin, I believe it was, or whatever iron-thing that should be between 120-150 in a female my age, was at 80). So began the pill-popping fun of the last year-ish. Up to this point, I was terrible at taking pills, and was only just starting to manage to take paracetamol without bracing myself over a sink in case I couldn’t swallow. That particular problem was fixed very quickly.

I was seen by a gastroenterologist at my local hospital within the next couple of weeks – apparently being a young woman with ‘urgent’ stamped on your file gets you seen very promptly, even in the public healthcare sector. I’m told the waiting list in gastro at my hospital is about 3000 people long. He booked me in for a full colonoscopy and endoscopy the day after my last exam. I don’t know how I survived/passed that set of exams – at least two of them I raced out of the moment I was allowed to, high-tailing it for the bathroom, thinking there to be no point getting a bathroom escort and going back in, because I felt SO awful, and would require a significant period of time in the bathroom to feel better at all. But I did, and the moment I got home from that last exam (having somehow managed almost the full three hours having had nothing but barley sugars, Mountain Dew and water all day, and mostly subsisted on chicken noodles the day before) I shuddered m y way through the however many litres of Kleen-Prep the procedure required.

Anyway, I obviously survived the procedures, and was told by the doctor who performed it, once I’d de-groggified myself on the hospital bed for a while, that it looked like… LEFT-SIDE ULCERATIVE COLITIS. Hooray!

Cue more gastro appointments, being prescribed Colifoam (occasional lifesaver!) Pentasa enemas (which were a serious fail for me) and at Pentasa’s failing, Asacol, which I’m still taking, even though my colitis is basically as bad as it ever was. The Asacol seemed to work for a while, back in February-ish, but then I started taking a contraceptive pill and everything seemed to go haywire – even after stopping the contraception, the Asacol didn’t seem to do very much at all for anything. I had a follow up flexible sigmoidoscopy about a month ago, since things obviously had to be further investigated, and the immediate response, again, once de-groggified, was that I still had some serious inflammation. Just a very small area, but this area in question was severely afflicted. My next clinic appointment to figure out what’s next from this new information is in a week, and new medication is definitely on the cards. Hopefully something that actually works for me , this time.

To give a sense of the current severity, I would have an absolute minimum of seven or eight ‘movements’ (of varying pain/consistency/mass) each day. I work full time in retail at the moment, luckily within easy dashing distance of a bathroom, and my lovely lovely co-workers are pretty used to my disappearances every twenty minutes-ish most mornings. My symptoms tend to die down in the afternoon, but not always – but if it wasn’t for that, I don’t think I could manage work. But every morning is a trial – especially the 3-4 minute walk between bus and nearest bathroom (I work in the campus bookstore). The number of little ‘accidents’ and near misses that happen do my head in – even the near misses tend to leave me super frustrated and angry at my lack of control. Not to mention in pain. At the beginning, I said colitis broke my phone – a couple of weeks ago, after an agonizing last ten minutes on the bus, I attempted to run down the street in pursuit of relief – and forgot that the pockets in the jacket I was wearing aren’t as secure as my normal coat. Phone falls out, screen cracks, I curse and nearly cry for both the phone frustration and the delay. My run also involves nearly losing my headphones, at which point I think I DID start crying, behind sunglasses, before actually getting into the bathroom and briefly breaking down. Amazingly, it was a near miss incident. But still.

I finished my degree last semester, thank goodness. But with the ongoing anemia for most of my studies (and the associated lethargy and whatnot) and the regular UC symptoms besides that, my GPA is nowhere near what it should be. I’m hoping that a well-worded email and letter from my doc will convince the postgrad advisor in my department that my average (one grade below the requirement, gah!) could actually be acceptable… once I’ve figured out if new medication will keep me moderately healthy. There’s no point in my committing to an academic program right now, since I wouldn’t be able to keep up to any decent standard. I’d love to be imagining postgrad, or travel, or real job possibilities, but I don’t let myself get wrapped up in ideas, because I have no idea what I’ll be capable of in six months. Here’s hoping things improve.

I don’t have any concept of ‘flare up’, because I’ve never had a ‘good’ period, save for maybe a few weeks when I started Asacol. It’s constant, it’s not fun, and I only explain it to very certain people. I prefer explaining it to older people, like some of my co-workers, because then I can just say ‘yeah, it’s in the same family of diseases as Crohn’s’ and I get the ‘oh you poor dear’ expression and/or the ‘oh, my friend has that, that’s terrible!’ tale. Younger people don’t seem so familiar with Crohn’s, and definitely not with colitis, so it’s only a select few who get the info – mostly it’s ‘tummy issues’. One friend has IBS, and her aunt has (apparently) one of the worst cases of Crohn’s in Australasia, so she’s a useful person to have around. A couple more also have Crohn’s connections, so that helps.

I’m also getting progressively less and less tolerant of dairy – not lactose, I’ve tried lactose-free milk and cheeses that don’t contain it either. Nope. It’s just milk. I’m going to mention to my gastroenterologist when I see him next that it’s getting very much worse – I was fine with cheese for a while, and even a tiny bit of ice cream – but now, bam, the next morning is going to be more hellish than usual. I’m going to request a proper allergy work up, so I can figure out exactly what’s going on… I miss pizza something terrible.

So that’s my tale, of a kind… the ongoing saga of a former-student/current-bookseller living it up UC-style in New Zealand. Typing it all out is rather cathartic. Now if you’ll excuse me, I, unsurprisingly, have to go to the bathroom.

Submitted by “Raw Library” in the Colitis Venting Area

4 thoughts on “The Kiwi Colitis Experience – An Ongoing Saga”

  1. Ha! I just happened upon this website for the first time, and the first story I read is from a fellow New Zealander :-)

    My story is actually really similar to yours – things started while I was studying, gradually got worse, I tried to ignore it, etc. – although my studies ended without a degree in my hand, unfortunately!

    What level of fatigue do you get, and do you think it started before the ‘real’ symptoms (blood etc.)? I had consistently worsening fatigue well before (like, years!) the first major flare hit, and I wonder if the disease was just slowly building during that time…it’s at the point now where I feel like a zombie most of the time, and it’s just unbearable.

    Anyway – great (or not…but you know what I mean) to hear about another Kiwi going through this, as there don’t seem to be many out there!

    1. Hello! I agree wholeheartedly with the ‘great to hear’ sentiment… definitely nice to know there are others around.
      In terms of fatigue, it’s hard to say, I guess because it was such a gradual build up – at least initially. Now that my anaemia is mostly sorted, I’d hoped I’d suddenly have more energy, but I guess because the rest of my symptoms have been mostly getting worse or at least the same, I have general sickness related fatigue happening instead of intense iron-depletion tiredness. It’s enough that I can very very rarely do anything productive after a day at work, and often fall asleep early than I’d intend. I suspect part of it is also due to periods when I’m at my worst and getting up every couple of hours in the night to use the bathroom, and therefore not getting as much sleep as I’m intending.
      Compare this (ie. just managing to get through the work day and collapsing into bed for a bit of computer and food) to before symptoms started showing, when I was in Year 13 and had a full-on school schedule combined with extra-curricular activities every other day and a part time job, and I was still full of beans and bouncy.

  2. I have Crohn’s, and my story is pretty similar to yours, except I started college in 2006 and still have a year left. I’m currently on academic probation, when I graduated high school in the top quarter of my class. It’s ridiculous. I’m planning on having my colon taken out before the end of the year, because I’ve tried every medication, and none of them have done anything to calm my symptoms. Hopefully once that happens, though, I can give my full attention to my last year of course work and get back to work, too.

    Good luck with everything!

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