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’.