The internet is really great for people with health problems; the support generated through social media and finding other people in similar predicaments is endless. I fall into a category of illness (or never ending nightmare) that is not only quite rare, but incredibly disgusting too, so it's hard to discuss it too frankly on things like Twitter. God knows why I think a blog will be any easier, but at the very least it'll provide an outlet for my frustrations, which only seem to be getting worse of late.
My whole life, I've suffered with slow transit colon/bowel, which in essence means that I can't use the toilet. Nobody has ever been able to work out its cause -- I was born 14 weeks premature and contracted a bowel infection after a few days, so really, my digestive system didn't stand a chance. Ever since then, using the bathroom has been a source of anxiety, pain, bleeding and general horror for me.
For as long as I can remember, I've been on masses of stimulant laxatives in order to open my bowels. My earliest memories are mainly of my nightly routine, which involved sitting on the sideboard in the kitchen whilst one of my parents poured me 20mls of Senokot liquid and 50mls of lactulose, which I had to take every night. Once a fortnight, I had to take a full cup (50mls) of Senokot in order to "clear me out", since the nightly dose had virtually no effect. Apparently when I was younger I was given enemas at home by my parents, but I've mostly repressed the ordeal, it seems -- I certainly wasn't too young to remember. I have vague recollections of my mom telling me to fetch a towel and get ready on the sofa, but nothing thereafter. Thank god.
I had endless dealings with several hospitals trying to work out what was wrong with me, and perhaps a way to fix it (three guesses as to the success rate?). Countless colonoscopies (two found bleeding polyps, but that was about as exciting as they ever got) and myriad other tests (barium meals, barium enemas, endoscopies, and something traumatic involving a balloon) yielded absolutely nothing. Between the ages of 8 and... Well, now really, I was left to my own devices with medication.
And mostly it was fine. "Not being able to go" was just a part of who I was, and though I never really discussed it with anyone out of embarrassment, I managed to deal with it. Whilst the laxatives worked as they should, everything was dandy, and I stayed on Senokot (in tablet form, thankfully) until I was 19. After that, I moved onto Bisacodyl, and that worked until about eight months ago. Or rather, I think it was until around then. See, I'd sort of engineered my life to fit around my stomach. I only worked late shifts so that I didn't have to rush out first thing in the morning, and so that I could sleep later (being forced up at 3am to rush to the toilet with around 30 seconds warning really takes it out of you). Then they got less and less effective, until I was waiting 8-14 hours for any kind of effect, and then they dwindled into nothing. Movicol and Docusate made me vomit; my stomach, frankly, laughs at Lactulose; and suppositories and enemas simply aren't an option. Thanks to years of orders to the effect of "Take off your knickers and bend over on the couch" from thick fingered doctors, I end up hysterical in about 20 seconds at the notion of anything rectal. Anything below the waist at all, in fact. I would literally rather die than have any kind of rectal examination. I can't put into words the level of fear it instills in me.
As an aside -- things like diet don't help. And suggesting things like "more veg!!" are patronising, ignorant, and actually kind of upsetting. For people with slow transit bowel, colonic intertia etc etc (all the same thing), fibre actually makes things worse. The only helpful explanation I've found is one likening eating more vegetables, wholemeal bread etc to adding straw to mud. Slow transit bowel is a neuromuscular disorder, not one that "eating an orange" (as someone genuinely suggested to me once) will fix. My diet is quite poor, I'll admit, but only because I see how my stomach bloats and hurts when I try to eat better. I don't eat much, and most things I do eat tend to be quite bland to avoid later discomfort. Nobody seems to believe me when I explain it. My strongest testament to how beyond help I am is this: earlier this year, I and everyone in my family had Norovirus. My family had both ends, but I only vomited every 15 minutes for 12 hours. My bowel did NOTHING. Not a thing. If such an intense stomach bug can't get things moving, "having a cup of coffee in the morning" isn't going to either.
About a year before they'd stopped working, I'd decided to train as a mental health nurse. I didn't give much consideration to how it'd impact on my stomach -- or how my stomach would impact on my ability to actually do the three year course -- which was perhaps naive and silly of me. A few weeks before I started, I managed to get a prescription for a new drug called Resolor (Prucalopride), which stimulates the colon without actually being a laxative (serotonin agonist or SOMETHING FANCY). It's being touted as something of a wonder drug but my consultant had found mixed results; however, given the imminency of my degree starting, he figured it was worth a try. Three of eight patients had had positive results. I was the fourth.
I hadn't expected it to work. I'd hoped, but I'd tried so many different things over the years, and nothing had ever really changed. The first time I used the toilet without laxatives, I cried. Happy tears, of course! I couldn't comprehend that THAT was how it happened for normal people -- they felt the need to go to the toilet, they went, and then carried on with their day. It was the life I'd always dreamed of, honestly. And then, after five weeks, the effects started to dwindle, which is apparently the fate of most people who take it (I'd LOVE to know where the statistics in the official documents come from -- over 80% of participants found the effects were maintained for longer than two years? REALLY?!). And I started to panic.
I still am. I have three options.
The first is to go back onto Bisacodyl 2-3 times a week and hope that a break for a few weeks will have reversed some of the tolerance I'd built up. It'd be difficult given that I have three early mornings a week, sometimes more if I'm on earlies at work. And the pain. And the unreliability. And the fact that they knock the daylights out of you. Etc.
The second is to phone my consultant's secretary and see if I can get a prescription for a drug called Lubiprostone (Amitiza). It was approved for use in the UK about a fortnight after I started Resolor, and sort of... vaguely... works in a similar way, but has more side effects. A lot of side effects. All things I'd be willing to deal with in order to complete my training.
The third option is an inevitability -- a colectomy. Removing my colon and attaching my small intestine to my rectum (ugh) would cure me forever. Were I not at uni, I'd be begging for this. Because of how placements fall and the slowness of the NHS, I'd very likely have to defer and repeat first year, and I'm not sure how happy I am to do that. I have friends, I'm starting assignments, I want this career more than I've ever wanted anything. But do I want it more than I want a normal stomach?
I'm actually taking a fourth option. Sticking with the Resolor and eating Activia (I don't know if it works but it tastes nice), taking 2 Laxido (much more tolerable than Movicol) and drinking 3 litres of water every day. And hoping. I'm in denial, you could say. I'm refusing to make a decision because I'm not ready to accept that Resolor doesn't work, or that I'm back where I started, or that I could have to give up something I love (even if only for a year). I'm scared and worried and uncomfortable (physically) and I don't think I'd be half as bothered by how messed up everything is if I hadn't had four weeks of normalcy. It's thrown everything off for me. I've seen how good things CAN be, and now I resent my situation more than ever.
In some ways I'm lucky. I still manage to live a mostly normal life (besides my deep, dark secret), I haven't lost or gained masses of weight, I don't get severe nausea and I don't vomit. I'd say 9 times out of 10 I'm uncomfortable rather than in pain when I'm severely constipated, which is a small mercy. I have a job, I have a social life, I enjoy food and don't treat it like an enemy. I've never been impacted or been so ill that I've been rushed to hospital. I've just gotten along. A bit at a time. So things could be worse.
I just hate knowing that things could be so much better.
