Thursday, 20 January 2011

2011 19th January - Tubes (not the underground kind)

Since my unexpectedly good news on Friday I got a new pain, in my side. At first I thought it might be kidney pain and the antibiotics hadn't worked. Then after drinking plenty on Saturday when my cousin was over it improved a bit in the afternoon so decided it was just the scarring on my kidneys playing up - being deyhydrated. Sunday it wasn't really evident but it got gradually worse by Tuesday and I started taking ibuprofen which worked. Wednesday morning I couldn't get out of bed until they'd started to work.

I had an appointment with the continence nurse in urology that afternoon so decided that was easier than queuing for a GP appointment.

The nurse said they usually see people a week after the op, not 3 months after, so she said I did really well trying any of them, let alone managing all three sizes. She didn't understand why the idiot that did the first op didn't refer me to her, nor why my first appt for referral was 2 months after op when I had the second. Told her I asked if this was an option a year ago and was told at Lincoln it was in fact standard, yet nobody at Pilgrim seemed to agree.

She showed me with her fisted hand what to do with a catheter and that we'd start with the smaller size and eventually work up to "a 16". I'm not sure if I'm just so used to medical procedures, that I knew what was involved before hand, having had plenty of catheters put in or that there is minimal feeling after surgery/treatment in that area, but it was pretty easy. I managed to get all three sizes in and the nurse seemed pretty impressed that I'd "done really well". I'm guessing there are some women who ONLY have that problem and are squeamish about the whole thing, whereas to me, with part of my intestine sticking out of my belly, it's just another daily task I have to perform to keep things "normal".

Doing this is an infection risk, as is the fistula which still remains in my pouch - meaning waste can get from Fatty's bag to my pouch, and out through the WRONG hole. Basically I'm just a walking infection risk - lucky I'm not on chemo, but if I do go back on it, I'm going to have to be ridiculously careful and lucky not to be living on antibiotics. I REALLY don't want to have to do that because they screw up the good bacteria in the remaining intestines causing more problems.

My urine tested fine, but could be antibiotics masking infection. I have some sample bottles, see continence nurse next Wednesday again and will do test for her and another for lab in case it shows anything then. Meantime I'm taking the ibuprofen which works.

If the pain gets worse then I'll go and queue up Friday morning for an appointment or ring up Dr out of hours but my scan is also next Wednesday (results 4th Feb). Quite likely it's just the "usual" pain moving, or something dumb like a pulled muscle from yoga (can't remember if I did any on Friday).

My stoma nurse is sure it's nothing to do with my bowels. She's never heard of anyone having pain with waste left in colon. Even if it is that, I'd have to see GP or consultant to suggest an enema or flush out anyway, they're not allowed to do it themselves without referral.

So, I'm now loaded up with boxes of "speedicath" catheters, wipes, antibacterial hand gel, larger waste bags, then my box of bags, dry wipes, small waste bags, adhesive rings, scissors, pen, adhesive remover spray, filter stickers, etc. I need to sort the shelving out in my bathroom to accommodate all my medical supplies!

Despite not having encountered Irene since November, my hair continues to fall out, whilst my eyebrows, leg, underarm (and *other*) hair is growing back. I guess it's the old ones still falling...not sure if they'll all go eventually, the ones that were around during Irene's reign? Anyway I cropped it one night at the weekend. I'm so sick of pulling even chin length hairs off my clothes and my pillow, sweeping constantly. It makes me feel grubby having hair all over my house. It balls up on towels in the washing machine - like it does in the bath plughole. That makes me gag.


Sarah said...

Oh loopy, hope the pain is nothing serious and goes away soon. If not for sure get it checked out. I hope this year brings you some luck with your journey, thinking of you.

Carole said...

With all this additional equipment they keep loading you up with, you're going to need a suitcase on wheels soon if you leave the house for more than 5 minutes :-)

Rough luck on the new pain but on a positive note you did well with the catheter.
Hopefully it'll stop at least ONE pain and not give you other problems (infection etc) along the way.

I know exactly what you mean about the plughole and hair - even thinking about it makes me you cringe, by any chance, if someone bites wool? :-) (shuddering now).....

Take care Lisa xxxxx

Loopy said...

Well I don't have any actual pain related to the catheter issue - just a urethra that keeps closing up with radiation scarring, just hope to avoid more frequent general anaesthetics.

Pain not so bad today in my side, still on painkillers for it though and tonight noticed white spots on Fatty. Wonder if that's from antibiotics. Ho hum...

As for the wool.....urgh. A boy called Stephen Smith used to run around the playground biting his woolly jumper. I just had a flashback!

Tony Songhurst said...

Wool not a problem but biting wooden lolly teeth are on edge just thinking of it...

I seem to be associating every pain with the little c at the moment and have bruises all over the place where I just knock against something...have to be more careful otherwise I will look like a blueberry.

Hows the eating going and have you kept on the cheese and the odd glass of red wine....I let my standards slip and drank a couple of tins of stella the other night but as I dont drink and have the green stuff my liver and kidneys did a grand job and didn't feel a thing the next day.

My hair looks like a rat has been chewing at it although as it is short anyways the bits are hardly noticeable.

Not sure of you have any beliefs but I have so will say a prayer or two for you for the 4th Feb results.

All the best

T xx

Anonymous said...


Solange here (Gertie/Jan)

I have recently had white spots on mine and it was thrush, had the one off tablet, half of which ended up in the bag a few hours later, but absorbed enough to do the job!

bear that in mind, might not be, but easily cleared if it is.

Deborah said...

i can put up shelves :)

Carole said...

I'm still shuddering :-) My mum used to knit a lot when we were kids and she would just casually bite off the wool at the end of a line.
I used to feel SO ill but she never understood it.
Hair is definitely my other 'thing'..I could never have been a hairdresser for sure.

Apart from that I also hate putting or removing ear-rings in for other people -urghhhh!

You do already take probiotics I think? I developed really bad oral thrush in hospital from the antibiotics so maybe Fatty might need a cream or something?

Rest up Lisa xxxx

Loopy said...

No Tony, I haven't kept up the cheese or had more wine! With such good results before Christmas, I can't take a risk that my diet is a contributing factor and let acidic foods creep back in. I still have odd treats, small daily ones or a big weekly one, depends how I'm eating.

Solange - I thought thrush after the antibiotics so increasing the yoghurt with the usual probiotics. No sign of it elsewhere which is good!

I've started to feel tired & virusy now - I think I'll have to see the GP and queue up outside at 8am for an appt on Monday (joy, in the freezing cold, in pain).