Day 76

Hello again!

Not long after my last post, I started feeling better again - not better than before the transplants, but better than I had been feeling, which was freaking horrible.

Still no improvement...and only 3 weeks before I go back for review. :(

Day 62

Sick, very sick...and have been for the last week in particular. As you can imagine, there's been alot more teariness, and in fact, for the last two days I've been vomitting; something that I haven't done for over a year.

I had yesterday off work, and had to cancel my birthday dinner with friends tonight.

Still no mood swings, but I'm really starting to prepare myself for the bald truth that this treatment simply hasn't given any other kind of relief...and won't. Its nearly 2 months since my first treatment - S had told me that they used to use 2 months as the guideline for any improvements to stabilise. Now they've changed it to 3 months, but still...it's not even stabilisation I'm looking for, just any kind of positive sign.

But, to make sure I give it my best shot, I've still got to keep up with the high fibre diet for the next 5 weeks or so, until my follow up appointment. As you can imagine, I've reduced my fibre intake a fair bit, and attempted to find out what else could be irritating my gut (changing time of day I swallow vitamin tablets to see if that makes any difference, going on a 'cleansing diet' of just rice bread and water for a few days etc), but no light at the end of the tunnel at present.

Hate hate hate

Day 51

Hate hate hate..

Day 39 was even worse than Day 38, and I've been hovering in a haze of unwellness ever since. I only took Days 38 and 39 off work though. I have goodish days, but mainly lots of bad days.

The worst thing is the mental cloudiness - until today, I've managed to keep it all together by applying double the effort to reach a normal standard of intelligence (unfortunately, brain power is needed for my job as a Business Analyst).

Today, though, the wheels fell off the cart. I had to conduct an impact assessment analysis, and for some reason, when doing my calculations, I read 1.7 million to be 17 million. Which obviously stuffed up my results. Which I proceeded to innocently distribute to my contacts, impressing them all with my stupidity.

When the Project Manager pointed out my error (cringe!) I tried to recalculate, only to realise that my brain didn't seem to know how to write 1 700 000. At which point I had to phone a friend to ask how to write it. QUADRUPLE CRINGE!! (Sandi, I hope you aren't reading this, o victim of my dodgy impact assessment!)

Anyways, I'm sick of this shit. Surely 8.5yrs of mental humiliation is enough for anyone, particularly on this side of 80?

I can only hope that this is the mental cloudiness' "last hurrah". I'm still not getting the mood swings, so hopefully we are progressing..kind of...some how?

Hate hate hate!

Day 38

Wow, that’s the last time I ask you to keep your fingers crossed from me!

Within 24 hours of my last post, I was really quite sick again – massive nausea (but weirdly, no vomiting), exhaustion, mental fogginess and bloating.

I’ve been falling into deep sleeps on the commute to and from work, and then again as soon as I arrive home in the evening. My stomach feels like its permanently churning acid, and my brain has gone AWOL. You know that ‘brain blank’ feeling you get when you are just randomly staring at something? That’s me, 24/7.

I’ve kept on truckin’ regardless – I’ve had 8.5 yrs of gritting my teeth through this kinda thing, so there was no reason to fly the white flag of surrender. Until, that is, I started getting teary. I don’t know why this happens, its like my body is so used to physical challenges that my brain doesn’t listen to it anymore – so when things get too much, my body ‘dobs’ to my emotions, who get themselves involved to force my brain to realise that I’ve had enough. Phew – did that make sense?!

Anyways, I’m not sure how I feel about this bout of sickness. I don’t know the cause; is it ‘Round 2’ of the Good vs Evil bacteria, or is it just my body rebelling against the build up of high fibre foods? The symptoms are almost identical.

I’m leaning towards the Good vs Evil theory, because I don’t have mood swings, and also, the 1.5 hr naps in the evening are very unlike me, regardless of exhaustion.

Because of this, I decided yesterday that I should be out there proactively supporting the Good bacteria – go team!! To increase my fibre intake, I bought some rye bread with multigrain (each slice has 20% of an adult’s daily fibre intake), and Weight Watchers baked beans (that brand had the least amount of sauce).

I felt slightly better after eating these last night, but that may be psychological, as I’d already decided not to go to work today, so I didn’t have the additional stress of trying to ‘push’ myself to get on with daily life.

I had some more baked beans and rye bread this morning, and am still feeling slightly better, but who wouldn’t after 3.5 hrs worth of naps and 12 hour overnight sleep in the last 24 hours?!

In any case, I think that’s enough baked beans and rye bread for at least a week – I’ve gotta try and balance helping the Good guys, with minimising any irritation to my gut through dietary changes.

Some friends have commented that I must be really frustrated by the lack of ‘knowing’ what’s going on. It is frustrating, but probably not as much as they’d expect. After all, I’ve been ‘not knowing’ for years, and at least now there’s a chance of light at the end of the tunnel, which is more than I can say for the first 7.5 years of this shitfight (no pun intended).

Had to go to the doctor’s today to get a sick certificate – it was quite funny actually. My normal doctor has left the practice, so I saw a new guy. I bought along my ‘HPI Patient Protocol’ booklet, so he’d know I wasn’t making things up (hmmm…there are those trust issues again!).

He well and truly believed me though – you should have seen his eyes fly open in shock when I explained I had undergone poo transplants! Then he tried to play it cool, though – pity he ruined it all by asking to keep Prof Borody’s business card!

Anyways, just writing this has drained me, so I’m off to stare off into space for a while. Good night!

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!