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:
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!
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.
Grr…