Living with Ripley

Tomorrow is my third chemo and because of the rather unpleasant (understated) side effects, tomorrow they will only be giving me one of the two drugs. The one they are dropping is only about 5% of the efficacy, so it won't make a huge difference medically, but should make a big difference to side effects. I've been unlucky, I've reacted badly to the chemo, but it still beats having cancer.

But on to 'Ripley', which is our fond name for my ileostomy. Luckily for me it is a temporary solution, but given that there are literally millions of people waiting for surgery due to the pandemic, it's unlikely that I will have my reversal operation any time soon. So here I am, now one of the several million people in the UK that poops through my tummy into a bag.

From Wiki - source not credited

Living with Ripley is not too bad - it took some getting used to, but now we have a routine for the change (every other day) and managing the skin. When skin is covered up (the edge of the bag around Ripley is around 3 cm all the way round) 24/7, and when chemotherapy turns my poop into chemical warfare, then keeping my skin healthy is a challenge. 

But it's a challenge we are working with, and thanks to my amazing partner, I have not suffered any really serious skin problems. Ripley itself has a few quirks, including a fistula (extra hole) and some granuloma, but I visit the stoma specialist nurse next week too, so she will advise if any extra care is needed.

Living with Ripley going forward is going to be interesting. Unlike the usual exit, there is no muscular control over the stoma, so I have no sensation (there are no nerve endings in the bowel) or forewarning of when my body processes waste, whether it's solid or gaseous. (I say 'solid', but it's only thanks to multiple tablets per day that there is any solidity whatsoever.)  In other words, there is no urge - it just happens. Hence the bag, everything is neatly contained and manageable. But.... it makes noises. And it makes smells.

For now I'm somewhat glad that when I return to work it will most likely still be working from home - but I'm going to have to forewarn my colleagues about Ripley, because there's absolutely nothing I can do about it. 

I'm hoping I will have the reversal operation, but when there are people in pain waiting for hip operations, people with other illnesses and injuries that desperately need treating, I am quite happy to go to the end of the queue and live with Ripley that bit longer.

Some different posts from this blog:

• Crocs in the fens
• What a difference a word makes