Day 30

Hello! *waves* I'm still alive!

Really, though, you could be excused for suspecting I wasn't - it's been far too long between updates.

But, in the two-and-a-bit weeks since my last poo transplant, I haven't had any further improvements, despite J's comment that by the end of Week 2, most patients are looking healthier and less drawn. And that kinda worries me, so I'm not focussing much on how things are progressing. (I'm only coming online because so many people have been asking for updates.)

The only positive I can come up with, is that even in my first week back at work, I wasn't anywhere near as tired as I had been during treatment.

I can only hope that I'm a 'late bloomer', due to the low levels of fibre in my diet (and yes, my body is responding as it did pre-treatment to the few new meals I've introduced).

Keep your fingers crossed for me!

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!