As I’m having an ok week and a good day today, I wanted to write it down.
I’ve been on antibiotics now for a week. I think they are helping as I have had a better week but of course with the demon fistula I can never be sure. Had a week of appointments what with optician, stoma nurses and ENT clinic but all been fairy ok. The optician has diagnosed me with Episcleritis which is this –
Episcleritis is a benign, self-limiting inflammatorydisease affecting part of the eye called the episclera. The episclera is a thin layer of tissue that lies between the conjunctiva and the connective tissue layer that forms the white of the eye (sclera). Episcleritis is a common condition, and is characterized by the abrupt onset of mild eye pain and redness.
It’s all to do with my general health of course and I think it does feel slightly better today. I then went to see my stoma nurses who was accompanied by a specialist wound nurse. I spent a few hours there being assessed and they tried a new bag on the fistula. All looked well but by the time I had got home, it had leaked which totally floors me. So my good mood was brought crashing down as I had to start from scratch again. I suppose I struggle more with the fistula than the stoma because of the circumstances in which it came about plus compared to my stoma management, its a nightmare. I’ve had my ileostomy 32 years and it’s no problem at all but this is a right pain. Probably because the hole is in a ridge on my stomach wall and so it’s very hard to find the right bag that actually sticks. Plus it’s all the things that come with it, the infections, the feeling unwell, exhaustion, more grumpy than anyone should be………..
Today I have been out the garden. I did some cleaning up and brushing, it was nice to feel the fresh air and the occasional glimpse of the sun. I also cleaned up lots of cat poo. To add to my exciting life we have an elderly incontinent cat, thank you world. I do find it frustrating as there is so more I want to do around the garden but it involves moving and lifting which I can’t risk and therefore have to rely on my husband who isn’t as fussy as I am so I get ‘ why do you have to do that NOW’ or ‘have you considered this or that ‘. It’s very frustrating as in all the years gone by I did all these jobs without him even realising. He probably thought the gardening fairy did everything but er no it was moi. So whilst he likes everything to look neat and tidy, he’s not used to doing it all himself or how much effort is required. So much so he is thinking of going back to work as I keep him too busy doing jobs he doesn’t like. I’m not sure how I feel about this but hey ho given up now. More me time for me so that’s not all bad.
Tonight I have house guests. My two nephews are staying overnight so we are going to watch Beauty & The Beast. They are 8 now and no trouble. Just made them food and they are so fussy! So 4 different teas tonight which is ridiculous and not something I would put up with long term! Quiche for me, plain and simple. Beef casserole and mash for Joshua, home made which he said was ok 😦, nuggets and chips for fussy-pants Joseph and jacket potato and quiche for his lordship lol. All finished off with ginger sticky toffee pudding which was lovely. I am not sure I could cope on TPN, it frightens me, it all frightens me.
So peeps that’s all for now, we can have good days with a fistula and this is one of them. Experience tells me it doesn’t last – I think the cavity empties and I feel better but then it slowly starts to fill again as the hole or damage to the bowel wall is still there. So I have to learn to enjoy the good days whilst they last.