Day 12

Yay, all finished (for now, anyway)!

Seeing as it was my last poo transplant, I finally worked up the courage to ask if I could see the enema equipment. J always brings the ‘tools of the trade’ in on a trolley, all covered up, and I had been too scared to ask earlier, in case it freaked me out.

It turns out that basically, the poo is stored in one of those bags used to hold fluids when patients are on a drip. The poo is mixed with saline until it is just ‘squishy’ enough to go down the tube attached to the bag, when J squeezes the bag.

The tube is the width of my little finger, and at the opposite end of it, is a plastic disposable thinga about the same size – that’s the part that is inserted into the bum.

That disposable thinga is hilarious - it’s (Caucasian) skin colour, and at its tip is a roundish ‘bulb’. Yep, that’s right, it looks like a dick. Big time!

I couldn’t stop laughing when I saw it, and said “J, you’ve gotta admit, that just looks rude!” She agreed, but said the hospital had tried several different disposable thingas, and this one was apparently the most comfortable!

Anyways, just under the ‘bulb’ are several holes, and that’s where the poo comes out into the bowel.

Once the amusement had worn off (it took a while!), I had a few final questions for J:

Q: Why does the patient handbook have only eight weeks worth of symptom sheets, when my follow-up appointment isn’t until 12 weeks’ time?

A: Follow-up appointments are generally made two or three months after the treatment has been completed, as it's around this time that improvements stabilise. Sometimes the deciding factor in the appointment scheduling, is how busy the Centre is.

The Centre can photocopy additional symptom sheets for patients who won’t be returning for more than eight weeks.

Q: OK, I know that my health will be up and down over the next few months – what I don’t know is why? Is it because the good and bad bacteria are still battling for supremacy, and sometimes the bad stuff is winning?

Basically, yes. Although the good bacteria are strong and healthy, their host bowel is a new environment for them, and they can take some time to adjust. Like babies, the bacteria need to learn to crawl, then walk, talk and finally, multiply! (Ooh, bad mental images of chatty bacteria in my body!)

Whilst they’re undergoing this process, there are bound to be some times when the evil stuff, that is on it’s “home ground” as they say in the footy, will be dominant, and it’s at those times that patients will feel sick. It is expected that over the coming months, the frequency and the severity of the sickness, will decrease.

Before I left, J had a final information sheet for me. It contained a reminder of the high fibre and protein diet requirements, and also stressed the importance of patients looking after their health, as if they get sick, antibiotic treatment may kill off the new bacteria. The hospital encourages patients to contact them if antibiotics are required, so that the types least offensive to the poor good bacteria can be recommended.

So…that’s it from me for now. I’ll probably check in once a week with updates on my progress, in the lead up to the follow-up appointment. Please keep your fingers crossed for me, and my ‘baby’ good bacteria!

Day 11

Feeling a bit better today – J has reassured me that the sudden sickness is all part of the poo transplant rollercoaster, and says that she is “not at all surprised”.

Even so, it was a fairly bedraggled JFo who fronted up for today’s enema, and I only managed one question.

Q: I hope you don’t have to smell poo all day long – do you?

A: No. The only time staff can smell poo is when they are working in the ‘HPI Preparation’ room. Even then, there are large vents that suck away the poo-ey air. Having said that, staff are also very experienced at holding their breath!

S came to check up on my progress today. She reminded me again that it may be some time before the success of the transplants is known – I don’t know why they keep doing that, I guess some patients are unnecessarily interpreting their ‘downs’ as signs that the treatment won’t work.

I’ve managed to put that kind of thing out of my mind – I’ve been waiting 8.5 years for relief, I can wait a few months more!

That said, I am dying to eat some ‘normal’ food, now that we have a possible light at the end of the tunnel. Given that the hospital don’t really deal with diet (other than to recommend a low-fibre diet just before starting poo transplants, and a high-fibre diet afterwards), S has advised me to introduce foods back into my diet as I see fit.

I’ve decided to stay on my current restricted diet (with increased fibre) until my follow-up appointment. Otherwise I risk bad reactions to reintroduced foods, and that could confuse my assessment of my progress.

After that, I’ll introduce foods that have ‘medium’ irritants over the period of one month, followed by a month of ‘high’ irritant foods, and finally, a month of ‘very high’ irritant foods – well, assuming everything goes to plan, of course!

I paid for my second week’s treatment today - $1565. I felt better handing over my credit card this time as I’ve discovered that its possible to claim for some of the fee back during my next tax assessment.

The way that it works is that you are rebated 20% of every dollar you spend on medical treatment over $1500 (after Medicare/private health fund claims are taken into consideration) in a financial year. For example, I spent $1800 on Vancomycin and Rifaximin last year, which is $300 over the ‘limit’. Therefore, my accountant claimed $60 for me.

So far this financial year I’ve spent $3445 (not including my private health fund’s hospital excess). So I should be looking at a minimum $389 return at tax time.

Anyways, S asked me to book my follow-up appointment with Prof Borody. Although I’ve been given eight weeks’ worth of symptom sheets to complete, they don’t want me back until 12 weeks, which is a bit strange, but whatever.

So my follow-up appointment has been made for 20 October (aka ‘Day 81’). God – it sounds so far away, but maybe, like the last fortnight, it will fly!

Anally retentive thoughts

Nah….still all thunked out!

Day 10

Oh dear, looks like the rollercoaster has taken another dip.

Today was pretty uneventful, until about 3:00pm, when the exhaustion returned, along with increased nausea, and also some abdominal pain (for the first time since the treatment started, I think). So I've been snoozing on and off ever since. Thank God I took this second week off work, because I'm really not very useful at the moment.

Other than that, there's not much to report today except for this conversation with J:

Q: So, I’m a bit behind schedule on health improvements – can I do anything to hurry it along, like maybe book in another week of poo transplants?

A: No, the limit is generally two weeks; after that it’s just a matter of ‘wait and see’. To continue on with more poo transplants without knowing the end result of the initial two weeks’ treatment, could be a waste of time and money.

A follow up appointment is scheduled with patients eight weeks post-transplant, to assess the success of the treatment. If further “top up” transplants are needed, they will be arranged at that time.

Whilst eight weeks is usually a sufficient timeframe for any changes to stabilize, some patients have reported improvements six months post-treatment!

Q: I was thinking about an earlier conversation we had about the transplants being a combination of different donor poos, to ensure maximum strength of the good bacteria. If this is the case, then surely the anonymous donor poo is preferable to poo donated by a single family member or friend?

Why then does the reading material I was given make very little reference to anonymous poo, concentrating instead on ‘known’ donors?

A: From the hospital’s perspective, the anonymous donor poo is preferable, not only because of the ability to mix samples for maximum strength, but also because the hospital know the donors very well, and have insight into their diet and lifestyle details. This familiarity gives staff an even greater degree of confidence.

That said, many patients find the concept of a poo transplant hard enough to accept, without the additional stress of the poo being from a source unknown to them. The additional cost of the donor poo (approx $90 per day) is also a factor.

The patient’s overall wellbeing (including their piece of mind) is paramount to the hospital, and as a result, detailed references to the anonymous donor bank are not made in patient reading material.

Anally retentive thoughts

Time for bed...again! ;)

Day 9

People, WE HAVE PROGRESS!!!

This morning I felt back to 'pre-treatment normal', so the only thing I had to whinge to J about, was that for the last few days, I've found it quite difficult to empty my bowels.

This is a little gross, but I find that I have to 'push' to poo, whereas usually, I just sit on the toilet and out it comes by itself, in an orderly fashion (unless I have diarrhea, of course).

J told me that this was a common complaint from patients; about 50% report it, often saying "I feel constipated, but I'm not actually constipated".

Apparently, this is just how healthy people poo! Who knew?!

(Well, me actually. As J was explaining, I got a sudden flashback to around the time I first got sick. I had noticed the change in poo habits, and as the 'unhealthy' way is...um, more efficient and civilised, I guess, I thought it was a sign that I was in good health. I actually kinda congratulated myself on it...if only I knew!)

Anyway, lots of poo transplant patients have been sick for so long, that they have forgotten what to expect from a healthy body. Wow, the "New Me!" surprises are coming faster than expected!

J reminded me that this improvement may be intermittent, for a while. She also didn't want me to get too excited, as I'm still a bit behind schedule so far as improvements go, due to ongoing mild nausea.

But hey - I've got proof that the transplants are doing some good, and that's more than I had yesterday! I can now stop wondering "Will this work?" and start thinking about "How much improvement will I get?"

Having said that, I'm not quite doing a happy dance yet. I'm picturing my feelings about it all as being a timid mangy mutt - my tail is still between my legs, but it is cautiously wagging in that 'abused dog' kinda way. I've been kicked in my flea-bitten bum too many times to jump on the celebration bandwagon just yet.

So...cautiously optimistic....

Anally retentive thoughts: Links I like!

Here are some sites that I've found helpful:

Bad Bugs

This is an awesome site that has a huge amount of information about the gut parasites Dientamoeba fragilis and Blastocystis hominis. It's author, Jackie, suffered hugely for years (far worse than me), dragged herself through many different treatments, and came up against much resistance from the medical profession (a fellow sufferer of the "How are things at home?" phenonomen!)

After much research on her part, and continual push push pushing, she got the treatment she needed.

Her story is pretty harrowing reading, and she's included some brilliant quotes, which I've stolen for you below:

"Research is to see what everybody else has seen, and to think what nobody else has thought."
Albert Szent-Gyoergi, winner of the Nobel Prize in medicine for his discovery of Vitamin C.

"Theories have four stages of acceptance: i) this is worthless nonsense; ii) this is an interesting, but perverse, point of view iii) this is true but quite unimportant iv) I always said so."
J.B.S. Haldane, 1963

"It's not that they can't see the solution. It is that they can't see the problem."
G.K. Chesterton — The Point of a Pen

"I have finally come to the konklusion that a good reliable set ov bowels iz worth more to a man than enny quantity of brains."
Josh Billings, American Humourist

The Helicobacter Foundation forum

Like Jackie's site, this is not specific to my condition, but rather specialises in discussing helicobacter pylori. Posts are regularly made by Dr Barry Marshall, who has proven that this bacteria is the cause of most stomach ulcers - by drinking a petri dish of the stuff, and then recording his symptoms!

Dr Marshall won a well-deserved Nobel Prize in Physiology/Medicine, along with his partner Dr Robin Warren.

Anyways, although this site is not IBS-specific, the topic does pop up from time to time.

Day 8

Another day, another enema!

Things went well today – my random knee ache has gone, and J has confirmed that it wouldn’t be related to the treatment anyway.

I’m also feeling quite alert and chirpy, which is impressive, given that I only had three hours sleep (one of those nights where you’re always either too hot or too cold).

My only issue is that despite going to the toilet fairly regularly, I felt ‘full’ this morning. Even with J transplanting the minimum amount of poo, I was still pretty uncomfortable, so she had me lie on my right side for a further 15 minutes after I’d completed my massaging to give the poo more time to move away from ‘the door’.

Speaking of the massage, I was much less grumpy today, now that I have a book to read. It actually felt quite luxurious, reading a book whilst reclining, at the same time everyone else was starting their working day!

Anyways, the extra 15 min was helpful, but I still felt like I needed to ‘go’. Fortunately, as a veteran freeway commuter, I’m good at holding on, and managed to do so all the way home (1.5 hours).

In fact, driving was such a good distraction, that I made a further 50 min round trip to Yarramalong, a beautiful lil town in the middle of nowhere. I love it out there; so much space and natural beauty that you are kinda forced to think of the ‘bigger picture’ instead of the typical petty daily concerns.

Ryan and I were actually considering buying a house there, but it was slightly over our budget (hmm…nothing that couldn’t be fixed by saving $680 per month on fricking stomach expenses, but anyway!)

By the time I eventually arrived home, the need to poo had receded, so driving might be a good tip for any fellow transplantees – assuming, of course, that you are at the ‘need to go’ stage, not the ‘going, going, gone’ kinda urgency stage.

Anally retentive thoughts: “The New Me!!”

Sometimes reality TV can be entertaining for all the wrong reasons, but I lurve it anyways! During the first Australian series of The Biggest Loser, the contestants underwent a ‘treetop climbing’ challenge, which was hell for Adro, who was scared of heights.

Adro ended up clinging to this treetop ledge, refusing to move, as his trainer Bob stood below, calling up something like “Adro, leave the old you behind – this is the new you! Say it with me; it’s the new you!” And Adro replied “It’s the new me!”

Bob was like “No, say it like you mean it, it’s the new you!” Adro shouted “It’s the new me!!”

They then went into this kind of trance of “It’s the new you!”/”It’s the new me!” for ages, and it was just fricking hilarious. (Although, um…maybe you needed to be there.)

Anyways, Ryan and I thought it was a crack-up, and every time one of us gets so much as a haircut, we’re proclaiming “It’s the new me!!”

The point of this lil story, is that if the poo transplants work, it really will be the new me.

I’ve been sick for 8.5 yrs, so any significant improvement is likely to have flow on effects; I’ll have to start getting to know myself all over again.

For example, from ages 18-27, I’ve maintained roughly the same weight (within a three kilo range, anyway).

Is my natural healthy weight at 35 yrs old the same as it was when I was 27? Generally I think people start to gain a bit of extra padding in their 30s. Who knows?!

And what about my skin? It’s always been dodgy, but underneath the acne scarring and stuff, should my base complexion actually be healthier looking? I look fairly drawn for someone of my age – is that the illness, or am I just aging badly?

Then there’s my personality. If my health improves, will I lose the mood swings, irritability and impatience altogether, or have they been around so long they’re like a habit I’ll need to work on kicking?

Will I be noticeably smarter, or will my brain just not have to work as hard, to get the same result? Also, is the commute to work as draining as I think it is sometimes, or was that just the exhaustion talking?

Without a doubt, though, the biggest question is, what will I eat? About 18 months into my illness, I suffered a head injury that severed my olfactory nerve, meaning that I can’t smell anything anymore, and the vast majority of my sense of taste has gone, too.

About six months post-injury, my sense of texture increased (KB calls it my ‘Wolverine power’), so that I’m much more aware of the different food textures in my mouth.

Given that my diet is so restricted, the textures I’ve experienced to date are pretty limited – dry rice toast, anyone?! But I’m guessing my food choices will change significantly – bring on the creamy dairy products!

Whilst its fairly easy to predict what I will like, it’s not so easy to guess what I won’t like. I used to love mushrooms, for example, but when I decided to have a ‘diet free’ day a while back, I noticed that fried mushrooms have a texture like I imagine sautéed slugs would. Bleurgh! Anyway, I’m probably jumping ahead of myself here, speculating on a whole new world that may not even eventuate. Back to crossing fingers and toes for me!

Days 6 and 7

Ho hum, not much to report.

J gave me a symptoms chart to fill in over the weekend, so I've completed that.

The ache in the small of my back seems to have migrated to one of my knees - dammit! Now I'm in a dilemma. Should I

a) report the pain to J tomorrow, stressing that I realise its very unlikely to be poo transplant-related, and risk being tagged as a hypocondriac?

b) ignore the pain, which, although highly unlikely, may be somehow related to my treatment, and further more, be a missing piece in the puzzle?

I'm going to go with option a) - I always do. It will be with a sinking feeling, though; I've never come across anywhere where I've been believed at all times - and unfortunately that includes the Centre.

I've already reported unexpected fatigue and a sore back - and now I'm about to add a sore knee to the equation. I'm really worried that the sum of the equation will end up being 'you're lying'.

I know I'm flogging a dead horse here, but I really don't understand the skepticism. Why would I make up 'red herring' symptoms, that could end up sending me in the wrong direction? The only possible motivation I can think of is to seek attention - but there are ways of doing that that are a hell of a lot cheaper (and less destructive).

Anyways, Ryan has caught the flu from someone at work, so I've banished myself to the spare room - the last thing I need is more ailments to confuse the issue!

Day 5

Tired again today, and mood-swingy, too.

Although I went for a walk yesterday to try and ease the ache in the small of my back, it has continued; even overnight.

I knew it was highly unlikely to be related to the poo transplants, but had to ask J just to be sure (poor J – I wonder if she’s starting to think “How are things at home?”!)

J confirmed that there is no reason that the treatment would be causing the ache. I had a sneaking concern that it could somehow be related to an injury/perforation of the bowel (one of the risks of the procedure), but J quickly explained that the pain involved in a perforation would be immediate, and much more severe than I was reporting.

So, I’ll just keep up the walking – hopefully that will help.

While J was performing today’s enema, I had a few more questions:

Q: So, I’m now half way through the treatment. When can I expect some results?

A: Approx 50% of patients on the 2 week enema course report results in the second week (the remainder experience improvement after the second week, or not at all)

The most common improvements are:

energy levels

healthier looking face (ie more colour, less drained/drawn) – bring that on!!

greater regularity in bowel habits

It should be noted that improvements can be intermittent – it’s not until 8 weeks post-treatment that results can be relied on for consistency.

Q: I won’t be having enemas over the weekend – will that affect me in any way?

A: No - the good bacteria that’s been donated will continue to attack the evil stuff 24/7.

Q: How many poo transplant patients does the hospital treat?

A: It varies – usually 2-5 per day. Hundreds have been treated over the years.

Before leaving me to my massage, J asked me what my plans were for the weekend. I don’t really have any; I just want to spend some more time resting. I’m a bit worried that other patients feel well enough to actually have weekend plans – I don’t seem to be going as well as I’d hoped, but I’m trying not to stress over it too much. I'm also keeping in mind that my exhaustion started before the treatment, so its like comparing apples with oranges.

Anyway, then it was massage time. You’d think the worst part about the whole poo transplant enema would be having the tube inserted into my bum, but actually, I’m starting to find that it’s the ‘post-enema’ massage.

The action is very similar to the motions pregnant women make when lovingly rubbing their bellies, so I feel a bit pathetic and barren, carefully massaging someone else’s poo around my bowel, alone in a sparse, clinical room. (Told you I’m having mood swings!) Next week I’ll bring a book and my iPod with me, dammit!

Luckily, I perk up on the way home when I get a lovely call from my work friend Deepa.

Once home, I ‘perk down’ – I’m irrationally upset that our dog Keira has dug a hole in the garden, and is refusing to come to me and accept her punishment.

Now I’m just plain tired and emotional – I wish I could eat some cake. Seriously. One of the worst things about IBS is that I can’t ‘comfort’ eat; there are very few ways that I can treat myself (although the occasional bubble bath does work wonders).

Oh well, off to dream of cream cakes and chocolate biscuits…and a better day tomorrow!

Anally retentive thoughts: Medical rant, part 2 “All women have fat days!”

Yesterday’s rant has reminded me of the most frustrating medical appointment of my life, and I thought I’d share it with you. To this day, 7 years later, it almost makes my ears ring with rage.

At age 28 (ish), I’d lived on the Central Coast for a little under a year when I asked my GP to refer me to a gastroenterologist.

I’d already seen one in Sydney, and although he’d conducted a colonoscopy, he hadn’t found anything, and gave me the soon-to-be-familiar spiel about IBS (no one knowing exactly what it was, or how to find out, so just deal with it, could be worse, blah blah blah).

So, anyway, this was all before I found the Elimination Diet, so my symptoms were at their worst and I was like a cranky zombie. But, desperation beat exhaustion, and I sought a second opinion.

My GP handed me a referral, with the ominous explanation of “I don’t know much about him, but he’s local…”

My GP’s dubiousness was well-founded. On arriving at the gastroenterologist’s office a few weeks later, I was greeted by a receptionist who asked me to pay the consultation fee before seeing the doctor (lets call him ‘Dr X’ – I can’t actually remember his name). Strange, I thought, as I handed over the cash, I’ve never come across this before…

Within 5 minutes of stepping into Dr X’s office, I was starting to understand the reason for the ‘payment upfront’ scheme. Dr X scanned my referral, before looking up at me in outrage.

Dr X: You’ve already seen Rob! Rob told you what was wrong – you have IBS!

Me: Well, yes, but I’m after a second opinion. I still feel like death warmed up, and its affecting every area of my life. I really can’t go on like this indefinitely. Are there any other tests you can give me? Or any treatment? I’m constantly sick and I just don’t know what to do. Maybe an endoscopy?

Dr X: I can’t believe this! Rob is a very good doctor, you know.

Me: I’m sure he is, but I want a second opinion. Surely it’s not unusual for patients to seek a second opinion? (I felt like I should be getting angry back at him, but one of the worst things about mental cloudiness is that you are never sure if you are reading a situation correctly. I wondered if maybe he had reason to be so rude, and I was just too fuzzy to see it?)

After Dr X asked some cursory questions, it finally sunk in that the cavalry had well and truly not arrived. I was so disappointed – every night recently when I was tossing and turning with stomach cramping, every morning when I woke up exhausted, and every time I vomited in the toilets at work, I reminded myself of how many ‘more sleeps’ there were to go before I saw Dr X, who would hopefully end this nightmare.

Tears welled up in my eyes.

Dr X: You are clearly depressed - that's all it is! Now you are crying!

Me: I am crying because I’ve just spent money, time and energy on someone who isn’t going to help me! (getting angry) Now I know why your patients have to pay you up front!

Dr X: ..and you obviously have mood swings!

Me: Oh my God, I am not so stupid that I don’t know the difference between depression and physical illness! Look at my stomach – would depression make that bloating happen?

Dr X: All women have fat days.

All women have fat days. Let me tell you, all women do not have fat days. Sure, my weight varies dependant on my hormones, but never, in the 28 years I’d been alive at that point, had I experienced random bloating. And if I had, without any other symptoms, I certainly wouldn’t have wasted money on a gastroenterologist to discuss it.

Anyway, eventually in desperation, I said something to Dr X along the lines of “I want an endoscopy – I’m offering you money for this, either take it or leave it!” Of course, with dollar signs in his eyes, he decided to make more of an effort by shoving a finger up my bum for a quick examination “Nothing there – just as I thought”, before booking the endoscopy. The results of the endoscopy, of course, were “Nothing there – just as I thought!”

Days 3 and 4

I’m back! Still a little under the weather, but certainly feeling better than I was on Day 2. Speaking of Day 2, I’ve had to go back and edit that post a bit – hmm, not sure if I had a fuzzy brain on that day, or have a fuzzy brain now, and think that what I wrote correctly, was incorrect and needed fixing.

Anyways…

With two more enemas under my belt (literally!) since I last posted, I think I can now lay claim to the dubious title of being an ‘old hand’ at this poo transplant business.

Here’s the latest:

Day 3

I woke up exhausted (don’t you hate that!) and mentally cloudy with a moderate amount of nausea and abdominal sensitivity.

I also had some cramping, but it seemed to be in my bowel or colon or something – it definitely wasn’t in my stomach. That was quite annoying, because at least with stomach cramps, I find that a hot drink helps (my stomach kinda ends up acting as my abdomen’s very own hot water bottle!). But no chance of a hot drink reaching that end of my digestive system anytime soon.

Anyway, when I arrived at the hospital, I emptied my bowels big time (sorry, TMI again – this is relevant, as I’ll explain later on!) and immediately felt a bit better.

I filled in my symptoms chart for J, and let her know how I was feeling. I was particularly worried about the exhaustion – obviously I’m looking to return to work soon, and I didn’t feel in any condition to do so. I hate that level of lack of control/independence – it really upsets me.

J suggested that the exhaustion may be caused by the early rising and the long drive to Sydney – I didn’t agree though, as I’ve commuted between Sydney and the Central Coast for almost eight years now.

Her other suggestion was the change in diet, but really, I’m taking it very slowly at present; I’m only eating food ‘allowed’ on my current diet, just increasing the volume of foods that have fibre in them.

With my brain as fuzzy as it was, we decided to talk about it some more the following day.

In the mean time, J was not happy with how quickly I’d gone to the toilet after my Day 2 enema. You’ll remember she’d told me I wouldn’t feel like I needed to ‘go’ straight away, and she was right. But after I’d done my massaging that day, I had needed to pee, and I decided to give my bowels an experimental ‘push’, just to check. Hey, it’s a long drive home, and quite frankly since I started this treatment, my body hasn’t given me clear indicators of when I need to poo, probably coz my bowel already feels so full.

Anyway, long story short, I ended up pooing out some of my donor poo only 45 min after it’d been inserted.

J told me that I must retain the donor poo for a minimum of two hours. Ideally, I should keep it for four hours, which is the maximum time it takes for all of the good bacteria to hop off board and start the good fight.

J decided, just to be sure, that although I’d already been to the toilet that morning, she'd reduce my ‘dosage’ from 300g, so that I’m not full to the point of discomfort.

After she completed the enema, I realised J’s right – my abdomen is feeling a lot more normal than it did after Day 2’s enema. It must be the combination of my pooing earlier that morning, and the reduced dosage.

The heavy, cramping feeling and sensitivity have reduced to almost nothing. It’s strange; I didn’t realise earlier what the cause of those symptoms was, but I guess having my bowel ‘filled’ from the opposite end than its used to, has confused my body a bit.

However, the exhaustion continued, so when I arrived home, I basically did nothing but sit around reading and watching TV – so much so, that the small of my back is sore from all that slouching and inactivity!

The good news is that I didn’t need a nap, and tentatively started to feel a bit chirpy again.

Day 4

Another tired start to the day, although my brain is now clear enough to remember that I actually started having this exhausted feeling about eight days prior to commencing treatment – I think I was thrown off track for a while by the typical post-colonoscopy fragility.

I remembered that the time the exhaustion initially started coincided with a reduction in my Vancomycin and Rifaximin intake, on S’ advice, to ensure that I had enough medication left to keep me going until the day before the colonoscopy preparation. (S very kindly didn’t want me to have to buy more, given the upcoming cost of the poo transplants).

When I arrived at the hospital this morning, with the proud news that I had retained my last enema completely, I asked J whether I could be having antibiotic withdrawls.

J explained that although antibiotic withdrawls can sometimes occur, exhaustion isn’t a symptom. Given the fact that I didn’t need a nap yesterday afternoon, we decided to continue monitoring things until Monday. If, on Monday, I’m still very tired, J will arrange for S or one of the doctors to see me.

Once again, the enema was straight forward, and this time I managed to retain it for three and a half hours. Not quite the optimal four hours, but enough that I feel I deserve the two lovely lots of flowers I received today (Thanks to Cr0mp0 n Ange, and my mum and dad!)

My diet is going well – I’m still eating lots of lentils, and have introduced brussell sprouts (diet-approved) and brown rice (not diet-approved) into the mix.

I’m still taking things really easy, but that’s given me time to do some web surfing. Earlier I posted the link to the Centre for Digestive Diseases – here’s the link for the poo transplant wing of the hospital (although strangely enough they don’t use that exact terminology, bahaha!)

KB also sent me this link, which is interesting for two reasons.

1) The woman in question had such bad diarrhea that she wearing nappies in a wheelchair!! And yet the diarrhea was cured within a day of her first poo transplant!!!

2) The article discusses the massive quantity of different bacteria species in the body. I have struggled to explain this to the people who have told me I “mustn’t have been diagnosed properly” given that the hospital still don’t know exactly which bacteria have overtaken my digestive system. Now I’ll just send em this link!

Good night!

Anally retentive thoughts: Medical rant, part 1 “How are things at home?”

OK, I knew I’d have to write on this topic, but I’ve been avoiding it for as long as possible because it makes me so ANGRY.

Before I visited the Centre for Digestive Diseases, I’ve consulted at least five GPs, and two gastroenterologists.

Most of them tried, to a certain extent, to help, but then just got to the point of shrugging and giving up. In a way, I can kind of understand the giving up – they deal with people who are suffering fatal, or potentially fatal, illnesses, so someone reporting the symptoms I have cannot compare priority-wise with that (although, it should be noted that Clostridium difficile can result in death).

But what I can’t comprehend, is the attitude. The whole “Well, we’ve done the tests and there’s nothing wrong, so obviously you have emotional issues. How are things at home?”

Arrgghhhh! “How are things at home?” gets me every time!

I’ve spoken to a group of friends about this, and the females knew exactly what I was referring to. The males, though, said that they didn’t come up against it, ever.

I’m all for the increased awareness of mental illness in the medical profession – it’s a huge issue in our society, and one that has touched my life. BUT:

just because you don’t have a test result that shows you what’s physically wrong with me, doesn’t mean that nothing is physically wrong with me. You are aware that illnesses that could not be accurately diagnosed and treated 50 years ago now can – so why aren’t you open to the possibility that I do have a physical illness; just one you aren’t aware of, yet?

If you can’t find an answer, but can see evidence of physical symptoms, why not just refer me on to someone with more specialist knowledge? If this had occurred, I could have been ‘poo-transplanted’ seven years ago, saving myself a lot of money and suffering!

while I can understand vomiting, nausea, abdominal discomfort and diahorrea maybe being attributed to anxiety, how do you explain the massive “congratulations on the new addition to your family”-style bloating??

I’ve got to tell you, I’ve experienced very significant stress in my time, and not once has my abdomen swelled like a camel’s hump in response.

the fact that you are smarter than me doesn't make me an idiot. I have lived my whole life in my body - I think I know it better than a stranger does, no matter how educated he/she may be

why is it that females always hear this ol’ chestnut, but not men? OK, females are generally more emotional than men, but, sticking with sweeping generalisations, surely with that comes a greater level of emotional intelligence, ie, coping mechanisms?

Grr…

Day 2

OK, I’ve learnt my first blogging lesson – never post a day’s blog until the day is finished!

I’ve got a bit to catch you up on:

Yesterday afternoon

After writing yesterday’s blog, I was all tired out, and took a 3 hour nap (as you do!)

I woke up in the early evening to chat with my friend Teins about the next hurdle – now the poo is in, how will I feel when it comes out?

I mean, obviously the poo didn’t originate from my body – is it going to look the way it did when it was, um, donated?? Or will it have my own body’s individual “JFo” stamp on it? What impact will the saline have on it? When will it come out, and will all 300g come out at once?

I didn’t have long to wait – about 30 min later, I “had to go”, as they say. There was only a lil bit, and it was quite watery (answering the saline question!), but it most definitely not mine. It was a completely different colour (well, same colour, different shade!) and it really freaked me out.

It bought home the fact that this was stranger’s poo – I had no idea who the donor was; his age, interests – hey, even what he had eaten, even though the remains of it were in me!!

It made me feel quite sick, actually – for some reason, when I was wiping my bum (sorry, probably TMI), I kinda felt like I was wiping his bum *shudder!*

Then, even though I’ve been wiping my own bum perfectly capably for over 30 years, I started to worry – what if I accidentally get some poo on my hand?! Really, it’d be the equivalent of me going up to some random guy in the street, and sticking my finger up his bum! (Well, maybe not on a personal level, but from a germ perspective it would!)

Luckily I had one of those ‘instant hand sanitizer’ gels – I think it came for free with a magazine or something. I’ve been using it carefully ever since, which is ridiculous when you think about it – I’m the one who has the suspect bacteria, not the donor!

Another bizarre thought is that I don’t know what the donor’s personality is like – what if he’s a racist, or a criminal, or some freak who gets off on donating poo??!! Suddenly I started to feel a bit alarmed and almost violated by the donor, which is silly, given I’m the one who requested his poo.

I shared my thoughts with Ryan for a bit of perspective, but his hysterical laughter didn’t help much. Then I wondered if I was telling him too much; was it possible that the conversation could turn him off me? No, apparently, he just thought it was funny.

He also found it funny when I decided that despite my (now understandable) lack of appetite, it was time to get some fibre into me. I’d found a bag of psyllium husk, which is a herb high in fibre. The husks just look like tiny bread crumbs, once I’d put them in the required glass of water, but Ryan claimed they were more like Sea Monkeys. So, one glass of Sea Monkeys down, and a slice of potato and lentil bake later, it was time for bed.

Which brings us back to..

Today

Today was the start of phase 2 – poo transplants via enema (Yay - no more Picoprep or anesthetic!)

Back at the hospital I was met by the nurse assigned to me for the rest of my visits; lets call her ‘J’. J was very friendly, and we quickly came to the conclusion that she has an awesome job – not only does she improve peoples’ quality of life, but she also gets a lot of insight into the variables that affect each patient with this relatively new treatment. Then, of course, there’s the all-important ‘poo transplant’ novelty factor!

J explained to me that every morning, I should ring a bell to let her know I’d arrived, go straight to ‘my’ room, and complete a chart noting the previous 24 hours’ symptoms, number of bowel movements and poo texture (one of the options is 'rabbitty' - tee hee! Apparently this refers to small, hard pellets). I’m then to strip from the waist down, and lie on ‘my’ bed, which has a built-in upward slope of approx 15 degrees. My lower half should obviously be at the higher end of the bed, so that the enema can flow down into the rest of my bowel.

I’ve never had an enema before, and found J’s description of it as “uncomfortable and unpleasant” to be right on the money. For all the ‘laydeez’ out there, I’d rate it similar to a pap smear.

I hopped up on the bed with my back to J, my knees at a 90 degree angle to my body. J started by putting some lubricant on her finger, and inserting it into my backside, just to make sure that there weren’t any unusual growths there or something else that the plastic enema tube could catch on.

That quick check complete, she slowly inserted the tube. Surprisingly, it only travels about a finger’s length into my body; just far enough to get it past the sphincter, which J refers to as the “door”.

The poo is then...injected, is the word for it, I guess. I can’t feel it going into me, but I do somehow ‘sense’ a feeling of fullness. J explained that I may feel like I need to “go”, but it won’t actually happen, thank God. When she withdraws the enema tube, the “door” shuts, and everything feels normal again. Although the whole process took less than five minutes, J constantly checked with me to make sure I was feeling OK.

The final step is to massage my abdomen, to ensure that the new poo spreads its good bacteria all the way back down to the very start of my bowel. This is done by small massage-y motions, performed in a counter-clockwise circle that is bordered by my pubic bone, hips, and rib cage.

The massage needs to be completed for 10 minutes whilst lying on my left side, 10 minutes lying on my back and a further 10 minutes lying on my right side. I also need to lie on my front (without massaging, of course) for five minutes.

During this time, I was able to have a Q&A session with J.

Q: I still can’t believe that 300g of poo was transplanted into me yesterday – do you have any idea of how many Mars Bars that is?!

A: It sounds like a lot, but the average person usually has 300-500g of poo inside them at any one time.

Q:So...how much poo was inserted today?

A: The average amount is around 300g, although it can depend on the person’s size. Today I got 300g again.

Quality is more important than quantity, though.

Q: What if my donor only provides 200g of poo – do you just mix it with 100g of someone else’s poo?

A: Patients hardly ever get poo from a single anonymous donor. Although all the donors have healthy bowel flora, the species and/or their strength vary, often dependant on diet. So, multiple donations are mixed, to ensure that the maximum variety of good bacteria are available.

(This all makes sense, of course, but doesn’t help with my ‘donor issues’ from last night!)

Q: How ‘fresh’ is the poo?

A: The poo is freshly ummm…created every morning. The hospital only conduct poo transplants in the morning, for this reason – they want to be sure that the bacteria are still at their best when used.

Q: When will I start to get rid of the transplanted poos – so far I’ve only released a little bit?

A: J was quite surprised that I’d even “gone” a bit – some patients can take up to five days before they start pooing. Can you imagine?! Assuming they were getting the optimal 300g per day, they’d have 1.5kgs banked up!!

Q: It takes me 1.5-2 hrs to drive home – am I likely to need to ‘go’ during that time?

A: No – once the “door” is shut, it’s shut for a while; patients very rarely have accidents

Whilst I’m still mulling over the above, ‘S’, the head poo transplant nurse, and my point of contact prior to starting treatment, popped in to say hi. Alas, although a doctor had approved the Sea Monkey drinks the previous day, she’s not a fan, as they can cause unnecessary bloating, so it’s back to the drawing board on that front.

The trip home was fine, as was the time spent drafting up most of this post, but at around 3:00, I started to feel really physically and mentally drained, but strangely emotionally neutral.

By 4:30 I was having another one of those three hour naps, but even now, 1 hour post-nap, I'm exhausted and ready to go back to bed. Although there are apparently no known side effects to poo transplants, S had warned me that there were "ups and downs" and right now I'm in freefall.

So, I'm signing off for the day, and might even give myself a blogging holiday tomorrow, for a rest.

Adios for now!

Anally retentive thoughts: The cost of IBS

Over the years, I’ve spent about $20 000 ($25 000ish by end of next week!) on treatment for my condition – but that’s only part of the ‘cost’:

General Health

In addition to the symptoms of IBS, there are other factors that need to be taken into consideration.

Firstly, my nutrition levels. I have very little calcium in my diet – certainly nowhere near enough for a woman in her mid-30s heading towards the osteoporosis danger zone. I had a bone scan last year that showed I was already in trouble.

I occasionally take calcium supplement Caltrate (which is free of lactose, flavour, gluten and preservatives), but only when my symptoms are at their dullest.

Secondly, I’m very unfit. I don’t have a weight problem, but obviously it’s better for people of all builds to have a healthy and active body. Unfortunately for some reason, I find that if I do even relatively gentle regular exercise, I hit a wall after about 3 weeks, in which I get feel very lethargic and unwell. Why? I don’t really know. Maybe increased circulation makes the evil bacteria more active?

Financial

I estimate my condition has cost me about $680 a month, this year:

$250 for the only brand of rice bread that I can tolerate (25 loaves at $10 each)

$200 on medications (Vancomycin and Rifaximin are really expensive)

$120 on JFo-friendly foods (Note: I have subtracted the approximate cost of feeding a ‘normal’ person’)

$40 for a month’s supply of Claratyne

$10 petrol to drive to the store where I collect the rice bread (which is couriered down from QLD, as it needs to be kept frozen due to the lack of additives)

$10 petrol to drive to Centre for Digestive Diseases and back (averaged for 1.5 mths)

$30 (approx) for cost of appointment at Centre for Digestive Diseases, post-Medicare rebate (averaged for 1.5 mths)

$15 (approx) for half a bottle of Caltrate

$5 for a water filter

Holy crap, that’s even more money than I would have thought! Imagine my mortgage (or lack of!) if I didn’t have to spend this money on my health!

Unfortunately, there’s no “two can live as cheaply as one” at my house – the food I eat is usually not something that would be selected by most people, and even when it is something Ryan is interested in, I eat the same meals so often, that he gets bored of them.

Ooh, also, I bought a bar fridge for about $400 this year, to store my rice bread in.

Social

Due to my energy levels, mood swings and highly restricted diet, a lot of my friendships have faltered, and even faded away.

I tend to dread events like birthdays and weddings, where I have to eat, because I know at some point, those side effects are going to kick in. I prepare myself the best I can, by eating as much ‘safe’ food as I can beforehand, lurking around a venue’s toilets so that if I need to ‘go’ (in any form!) I can make sure that no one else has to bear witness to it, and by packing a vomit bag in my car (I know, I’m all about sophistication!)

I also find the whole dietary thing very embarrassing – if I was a friend of mine, I hate to admit it, but I think I would be a bit skeptical as to the legitimacy of it all. I’ve read a few sniffy articles in the media in recent years about ‘hypocondriacs’ with ‘food intolerances’, and I feel very self conscious as a result.

A well-meaning friend may say “But surely you can eat this item on the menu? Or this one? Which restaurant can we go do where you can safely eat?” and I’ll eventually just snap “Nowhere is OK, alright? So please stop worrying bout it, I’ll go for the least dangerous option, just stop fussing, OK?!”

As for weekends away, don’t even think about it…

Intimate relationship

Don’t worry, I’m not going to get too icky, but let’s get that part over and done with: if you were constantly nauseous, would you often feel like having sex? Me neither.

OK, now back to the emotional part of a relationship: I don’t know how Ryan does it. He didn’t married the girl he started dating, coz she doesn’t exist anymore. There’s not much fun in being with someone as physically, socially and financially limited as me, not to mention the mood swings. There’s also no romance or seduction in vomiting, diarrhea, constipation and poo transplants – if I was him, I don’t know if I would have stuck with it.

I’m glad he did, though! :)

Career

As I mentioned earlier – the brain-dead emails make me burrrnnn with shaaammee.

For the first few years of IBS, I decided to stay in a role that wasn’t challenging me anymore, in the hope that I’d get better.

The role I’m in now does challenge me, but I shrink away from opportunities to further my career, or visit a company office in another state – let alone another country – for fear of the side effects of being off my diet.

If any of my work friends read this, they’ll be like “Pffttt – perfectionist!”, because I don’t think most people notice how dopey I can get. But, that’s kind of part of the problem – I can get very intense at work, in an effort to compensate for the mental fogginess, and it can put people offside.

(Again, for the friends at work, I want to quickly acknowledge that I had a pretty serious head injury in 2003, and that has also impacted my abilities at work, far more severely circa 2003-2007 especially, but I’m going to leave that out of this blog, because adding other health issues just confuses things.)

Mentally/emotionally

Its frickin relentless.

To have so little control of my moods is a killer. Not only do I get these anger surges, but I’ve missed out on some of what should have been the best moments of my life. Like most of the ‘honeymoon period’ when Ryan and I first got together. And any excitement re buying our first house - I actually didn’t have any emotions at all about that.

This, coupled with all of the issues mentioned above…I feel like I’ve missed the best years of my life. But oh well, hopefully through this treatment, I’ll find myself some new ‘best years’.

Day 1

Update:

Well, I’m officially carrying a 300g 'passenger', along with 500ml saline. 300g – that’s massive, isn’t it? On the drive home, Ryan and I estimated it to be 3-4 Mars Bars.

I really didn’t think it would be that much – of the 16 case studies I have access to, most refer to 5-30g – only one refers to 300g.

Oh well, the more good bacteria, the merrier!

OK, let’s start at the beginning:

I had a pretty rough evening last night, with some vomiting and lethargy. When I got up at 5:10am today, the lethargy had gotten worse (I had to sit on the floor of the shower, and washing my hair was a huge effort), I had nausea and felt dehydrated – probably a result of vomiting up the prescribed levels of water I had to drink the previous day.

When I rocked up at the Centre’s hospital wing, I had the opportunity to ask any further questions, then it was time to strip off, and start modeling one of those gowns with ties at the back.

A blood pressure test, oxygen mask and cannula later, I was ready for action. I dozed for a bit, then woke up feeling cold and wishing they’d hurry up with it…only to be told that the deed had been done! (I don’t know why, but colonoscopies are like that – I’ve always woken up unsure if they’ve been performed yet.)

I was a bit wobbly, so the nurse gave me some water, more Immodium, one of those airline packets of bikkies, and a cheese and cracker pack. Those foods obviously aren’t allowed on my diet, but I ate them anyway – I was too dazed to do anything else.

Next, the nurse told me by appointment for tomorrow was at 9:15, called Ryan to come and collect me, and left me to it.

I paid for the first week’s treatment ($500 hospital excess fee, $460 donor bank contributions – that’s $92 a pop!, and $1420 for the colonoscopy and the 4 remaining enemas).

Then I turned around to see my lovely Ryan arriving, with a bouquet of native flowers, a newspaper and a magazine for me - God love him!!

I’m home now, and still a bit wobbly, but feeling better all of the time.

I do feel a bit like my insides are ‘full’, but I suspect that’s just psychological.

No regrets and no icky feelings – my commitment to the treatment was reinforced by a brochure in the Centre’s waiting room, showing ‘before’ and ‘after’ shots of a colon, from a patient suffering Ulcerative Colitis.

My main concern at present is my diet.

Now that I’ve had good bacteria introduced into my system, I need to encourage the lil critters to go forth and multiply, and giving them sustenance through a high fibre diet is the way to do that.

I’m really scared though – tearfully scared – that by deviating from my diet of five years, all I’ll do is open the flood gates for my symptoms to return with their original intensity. It almost feels like self-harm to go onto the high fibre diet the Centre is recommending, even though I understand the reasoning behind it.

Originally, I was only planning to take the first week of the treatment period off work, but when I found out that my diet has to change, I tentatively booked next week off too.

The worst part about this all is that if the new diet screws me up, I can’t revert to my old diet, as doing so could jeopardise the success of the poo transplant treatment, which can take more than 6 months to reach its maximum potential. I feel like I’ve basically just signed up for a gale-force return of physical symptoms, topped with an emotional tsunami and so much anger I can’t even find a metaphor for it. But…what other option is there?

Anally retentive thoughts – Why the Bog Blog?

I haven’t yet covered why I’m documenting this ‘journey’ (as they say in reality TV world). There are a few reasons:

for the interest of Irritable Bowel Sufferers everywhere, who, like me and St33lFury, have spent hours trawling the net for information on treatment

for the IBS sufferers that I know, who are keeping their fingers crossed for me

for the friends who have been hearing all about poo transplants for the last 18 months – proof I’m going to ‘put up, or shut up’!

for my friend Ayse, whose ‘n00b soul’ I have been lucky enough to know for the last 10 years. She’s in Turkey at the moment, and so disappointed not to be around (or so she claims, she might end up appreciating the distance if I go feral!)

in the hope that someone from the medical industry will come across this, and perhaps be less dismissive of IBS patients as a result

The main reason, though, if I’m honest, is that I’m doing it for me. It frustrates the hell out of me that I haven’t been able to do anything constructive with this whole stomach situation, to give it context in my life.

So here’s trying!

Note: Yesterday I wrote a lil stockpile of these ‘thoughts’, which I’ll raid each day – the above is one of them. The reason for this is that I’m worried that now I’m on a high fibre diet, the mental fogginess will descend, and all you’ll get from me will be dribble.

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…