Sunday, July 11, 2010

The lead up....

There are times in most people's lives when they just have to ask themselves, "How the hell did it come to this?!"

Today is one such day for me.

As I type, I'm preparing for a colonoscopy. That's not the cause of my musing, though - I'm not that much of a princess! This is my third colonoscopy in 8 years, and although they aren't much fun (it's all fun and games until you drink the last PicoPrep sachet), they don't compare to the reason I'm undergoing tomorrow's procedure. And that reason is so that someone else's poo can be inserted as far into my body as possible.

So...how the hell did it come to this?! As you can imagine, it's a long story.

The symptoms

In early 2002, I started feeling a bit under the weather - nothing serious, just a 'blah' enough to have serious cravings for healthy food. As a 27 year old shift worker, burning the candle at both ends, I pretty much ignored those cravings and continued to survive on the contents of the lolly jar strategically placed on my desk at work.

And then, suddenly in March 2002, it hit me – and although the severity has varied, its never stopped hitting me:

  • frequent (almost daily) vomiting, once so strenuous that blood vessels in my face burst due to the strain

  • constant nausea

  • bloating so severe that sometimes clothes that fit me in the morning, don't fit me in the afternoon. Oh, and on more than one occasion I was congratulated on my (non-existent) pregnancy

  • the appearance of a swollen thing below the surface of the right hand side of my abdomen - it kinda looked like another hip bone, but at a slightly lower angle. I've since been told that it's part of my colon

  • baaaad cramping in my abdomen – mainly around the centre and my right hand side, occasionally resulting in feverish symptoms, including sweat running down my face

  • stomach ‘growling’; sometimes so loud it can wake me from my sleep

  • abdominal sensitivity - the pressure of clothing, a seat belt, a hug, or my own hand on my stomach whilst asleep can be enough to send me into waves of nausea

  • humiliating levels of mental cloudiness/confusion. After a 'bad stomach' day, I've learnt to avoid my Outlook 'Sent Items' folder at work. Evidence of my stupidity just burns me with shame.

  • lack of physical coordination. I often have burn marks on my hands and arms due to run-ins with hot irons and ovens, accessorised with fingers nicked by kitchen knives, and an almost constantly bruised leg from running into the sharp corner of my bed

  • a constantly runny nose and phlegm-y throat

  • extreme mood swings (I used to roll my eyes at people who slammed doors, but once I found myself kicking the fridge. I have a whole new empathy for women who suffer from PMS – if my experiences are anything like theirs, I now know that they are not simply cranky because they are in pain)

  • constant dark circles under eyes

  • diarrhea/constipation

  • the feeling that I was never really emptying my bowels; I always felt like there was more to come, even when there obviously wasn't

  • extreme fatigue – at my worst, I was sleeping up to 16 hours a day. My body felt heavy, like I was walking through water. I found even tasks that required very slight exertion, like scrubbing pots and pans, absolutely exhausting.

    Treatment that didn’t work

    With symptoms like the above, I couldn’t afford not to try every type of diagnosis and treatment method I could find.

    Some of the treatment was definitely on the wacky side, but I felt that there was no option but to try everything – its impossible to make educated decisions on treatment, when you don’t even know the cause of the symptoms. (Like many other sufferers, I had to be content with the generic term ‘Irritable Bowel Syndrome’)

  • comprehensive blood and stool tests

  • a helicobacter breath test

  • an abdominal ultrasound

  • an endoscopy

  • a colonoscopy

  • naturopathy, including ‘prescribed’ probiotics

  • a dietician

  • vitamin injections

  • Yakult

  • ‘Inner Health Plus’ capsules

  • Chinese herbal medicine

  • Bowen therapy

  • colonic irrigation, at a clinic where I was told they would be able to diagnose me based on my stool samples. They diagnosed me with bowel thrush…without any form of medical assessment; “Just looking at it, it’s obvious!”

  • Advanced Allergy Elimination procedures (This basically involves prodding the spine with some sort of tool in an effort to ‘re-set’ the immune system, which has apparently been upset by something, and has interpreted the culprit to be every day foods. I know the ACCC were looking into this company last year for breaches of the Trade Practices Act – I don’t know the outcome)

  • an iridology reading

  • some weird treatment, I can’t remember what it’s called, that involves holding a piece of metal, while the ‘practitioner’ assessed the response of the body’s energy levels to it. She then 'prescribes’ some herbal medicine drops

    Treatment that kinda worked

  • Royal Prince Alfred Hospital Allergy Unit’s Food Intolerance ‘Elimination Diet’, of which I’ve been a devotee since 2005. Whilst strictly following the diet, I estimate my symptoms reduce by about 70%.

    The restrictions of the diet depend on the severity of an individual’s symptoms, and as a slave to my symptoms, I avoid anything considered a possible trigger; including gluten, wheat, dairy, soy, artificial colourings/flavourings, and natural foods with significant levels of the natural food acids amine, salicylate and glutamate.

    For the uninitiated, that means I can’t eat any fruit except for pears (and even those tend to set me off), and very limited selection of vegies.

    Even with the 'allowed' foods there are some pretty stringent rules - meat should be freshly slaughtered, and should be eaten as soon as its cooked; leftovers should not be refrigerated. Also, some vegies can only be cooked for five minutes; after this they double the amount of food acids present. I don't mean to be ungrateful, but it can be very frustrating (like "put the food in the oven, pull your left earlobe and sing to the intolerance gods").

    Anyways... I also tend to shy away from high fibre foods.

    RPAH recommend avoiding vitamin tablets with any of the forbidden ingredients, and also, among other things, using soap and body lotion designed for sensitive skin, to avoid any further reactions.

    On the clinic’s advice, I also take Claratyne daily, as this anti-histamine dulls nerve-endings, therefore (theoretically) minimising irritation.

  • Drugs! Since October 2009, I’ve been taking the anti-inflammatory Salofalk, and various antibiotics (It took a while to find the right combinations, but I’ve been on Vancomycin and Rifaximin for most of this year.)

    These drugs were prescribed by the Centre for Digestive Diseases, which a work friend and fellow sufferer recommended (quick shout-out to St33lFury – you pwn!)

    The centre seems to be a haven for chronic sufferers of gastrointestinal conditions, and the symptoms I relayed were certainly nothing new to them.

    Based on my history, they suspected I had a bacteria bug causing infection in my digestive system. To confirm this, they conducted a colonoscopy, including a far more thorough search than is usually performed by gastroenterologists (apparently it’s a case of “if you don’t know what you’re looking for, you won’t find it”).

    They identified tiny red spots on my colon, that did indeed confirm an infection was present. A sample was taken for analysis, but I was told that it is often very difficult to identify the bacteria at fault. In the colon alone, there are approx 500 species, and 30 000 subspecies of ‘normal’ bacteria – that’s enough to keep labs busy, without having to identify all of the ‘abnormal’ bacteria types, too.

    The abnormal bacteria most easily identified is Clostridium difficile, but the analysis came back negative, so our culprit remains anonymous.

    It’s thought that whatever the bastard’s name is, it originates from a second or third world country. Being a home-loving Skip whose only international venture has been to New Zealand (!), I can safely assume I’ve picked the bug up second-hand.

    The most obvious source is my ex-boyfriend, who came back from Papua New Guinea in 1998 or 1999 with a really bad case of gastro – so bad that he thought he was going to die. Having seen the guy suffer ‘man-flu’ in the past, I wasn’t too worried about this prediction, and didn’t keep my distance.

    As a result, I ended up with the gastro too – and although it was the worst I’d ever had (I ended up in Casualty, in search of an anti-nausea injection), it went away after about a week, and I forgot about it.

    I’m guessing the bad bacteria was outnumbered by the good bacteria at that time, and although the bad bacteria never really went away, it did behave itself...until, of course, I started burning the candle at both ends, in 2002.

    Anyways, I’ve gone off on a bit of a tangent, but without going into too much detail, the drugs improved my toilet habits hugely, leading me to believe that the bacteria/infection diagnosis is correct.

    Alas, you can only rely on drugs for so much. As soon as I deviated from my (low fibre) elimination diet, the symptoms return with a vengeance. The reason for this is that, as we all know, fibre ‘feeds’ your gut bacteria. Whilst most people’s dominant gut bacteria is normal, mine is pure evil, and relished to opportunity to strengthen its monopoly, making its presence known.

    Also, there is only so long that you can take antibiotics before the evil bastard starts to build up resistance, and that’s the last thing I wanted to happen.

    Which has led me to….

    Treatment I hope really works: the poo transplant!

    Note: Obviously the below is written based on my understanding, as someone without a medical background. There are therefore possibly misinterpretations here – please keep that in mind.

    What the hell??!!

    Poo transplants (known as ‘fecal bacteriotherapy’ and ‘human probiotic infusion therapy’, to everyone other than St33lFury and myself) are generally a last resort, and, to my knowledge, the Centre for Digestive Diseases is the only place in Australia in which it’s available. Having said that, clinics in America have recently begun contacting the Centre for advice on setting up similar treatments, themselves.

    Although I’ve been given results of clinical trials dating back to 1958, the treatment is not yet widely accepted – I think this is partly due to the ‘yuck’ factor.

    And I admit, the ‘yuck’ factor is understandable. A poo transplant involves obtaining a small about of poo from a healthy ‘donor’, mixing it with saline, and inserting it into the bowel of the patient. The healthy, strong bacteria from that poo sample, will then start attacking the evil bacteria ( ie “Reinforcements have arrived!”), and eventually become dominant.

    Although I’ve had probiotic treatment before, it’s generally involved the ‘top two’ good bacteria (Lactobacillus acidophilis and Bifidobacterium bifidus) being ingested via tablet or powder. Really, though, if you are going to fight an infection, you need the ‘whole team’ of proven good bacteria, not just the star players!

    As mentioned earlier, the ‘whole team’ consists of thousands of players. It’s not feasible to cultivate the right combination in a lab, hence the need to go right to the source - real, ‘live’ poo straight from a healthy bowel. *Minor cringe!*

    So yeah, there’s definitely a ‘yuck’ factor, but I’ve gotten to the point where being grossed out is a luxury.

    Umm..where does the healthy poo come from?

    There are two options:

    1) The poo is provided by an anonymous donor to the Centre’s Donor Bank. Most of the Centre’s donors have significant ‘tenure’ (some around 10 years) and are regularly subjected to the same kind of screening as organ donors.

    2) The more common option is that the poo is provided by someone close to the patient. The preferred donor is a male blood-relative (as females are more likely to experience digestive illness, all donors must be male), although a partner or friend is also acceptable.

    Of course, like anonymous donors, ‘known’ donors must also undergo screening.

    I’m going the ‘anonymous’ route; my only male blood-relative is my father, and not only does he live 2 hours away from me, but he’s in his 80s and doesn’t have the healthiest digestive system in the world. My other likely option was my husband, Ryan, but, as a Type 1 Diabetic, he’s ineligible too. (Thank God, in a way – it’s not the most romantic form of sharing ‘n’ caring!)

    A male friend has volunteered, quite rightly pointing out that he’s been giving me the shits for years (hi KB!!), but again, he’s not local to me, and quite frankly, the whole thing just seems less creepy if the donor is faceless.

    How is the healthy poo transplanted?

    It depends. I believe all patients have the poo transplanted via enema, but some patients (like myself) have the first ‘load’ (eww!) inserted via colonoscopy.

    Is one transplant enough?

    No. Patients have between two and ten treatments.

    Due to the chronic nature of my illness, and the impact on my quality of life (compared to a healthy person, of course, not someone with a life-threatening illness), the Centre have recommended I undergo ten treatments – that’s one per business day, for a fortnight.

    What are the risks?

    Besides the traumatic mental image? They are:

  • acquiring a disease from the donor (although regular screening is conducted there is a 2-3 week window before some diseases can be detected, post-initial infection)

  • bowel perforation during the procedure

  • the ‘double whammy’ of having no improvement (only 80% of patients experience ‘good’ results) and an unhealthy bank balance (the total cost is $4 000 – 5 000, depending on health fund)

    What preparation is required before the treatment?

    1. Continue with low fibre diet and drugs until 2 days before the colonoscopy.

    2. On the day before the colonoscopy, (assuming its going to be a morning colonoscopy, like mine) no solid foods can be eaten – only clear liquids. In addition to this, at 8:00am, 2:00pm and 7:00pm, you must drink a Picoprep solution. This insidious drink gives you diarrhea, so that your bowel is cleared out for the colonoscopy.

    I’ve gotta say, it’s not pleasant. Aside from the obvious, you get wicked cramping – I generally end up frail as a lil ol’ lady by the end of it.

    And also, I just don’t understand it – the liquid eventually ends up coming out your backside, like you are pee-ing. Seriously, there is no poo in it, just liquid. What’s with that? It’s a liquid, why doesn’t your body direct it to your bladder?

    Anyways…

    3. On the morning of the colonoscopy, you have to take 2 Imodium tablets on waking, with a sip of water. Nothing more can pass your lips. So not only are you a frail lil ol lady, but you are also constipated (for transplant retention purposes) and your lips are cracked.

    And you are facing the prospect of having someone else’s poo set up shop in your bowel.

    Wish me luck…