For full details of my hospital stay, please see my main blog (Cancer Diary page). I have now been home exactly a week, and my convalescence is going well, albeit slowly. I keep being reminded by everybody (professional and lay) that I have undergone major surgery – a very serious operation – and that recovery is not going to take place overnight; it will be baby steps, and a long and slow process involving lots of rest.
In the early days after surgery, the nurses took care of my stoma bag for me, emptying and changing it. At this stage I wasn’t too aware of what was going on, and the output was fairly minimal, and very liquid. Once I had been on the ward for a few days, the stoma nurse started visiting on a daily basis, coinciding her visits with those of my hubby, so we could learn together.
My initial thoughts were that I would come round from the operation and at the first sight of this aberration on my abdomen, would freak out and say “Get that thing off me!!!” but contrary to expectations, it has been far less freaky than I’d expected. I think a lot of this is due to the fact that during the delay in my admission caused by so many postponements, I had plenty of time for online research, and I gained a huge amount of support and information from the Ostomy Support Group on Inspire, and I so steeped myself in the weird and wonderful world of those who crap out of the front instead of out of the back, that it gradually became more normal for me, and very familiar.
The stoma management training was excellent. The first time, the stoma nurse simply did the whole thing in front of us, explaining each step. She gave us a printed sheet with instructions, and a list of supplies needed for each bag change. She said it was a good idea to get everything out ready before one starts, and I have followed this advice ever since.
The next day she encouraged me to do it myself, under her direction, and my hubby helped, passing me things as I needed them. The next day he and I did it together, and then he did a change all on his own – it is very good that he has wanted to be involved right from the outset, and we know that if I am having a bad day M.E.-wise and don’t feel up to dealing with it, he will be able to do it for me.
I was soon able to get myself to the loo and empty the bag myself. To start with, I sat myself on a chair in front of the loo and then emptied the bag, and continued with this, sitting on my shower stool, when I came home, but then I got to thinking that if I am out and about, I cannot depend on there being anything in the loo to sit on, unless I’m using my wheelchair, and I started sitting on the loo itself, with the seat up, to allow more room, sitting well back, and emptying. This has proved very satisfactory and is now my preferred method.
To start with, the smell really freaked me out. I am a naturally fastidious person who hates nasty niffs and bodily mess – I would have been hopeless with babies lol!! One of the nurses helping me in the early days suggested doing what they all do – they have to deal with horrible smells coming from patients all the time, and she said they just breathe through their mouths! I started doing this and it wasn’t so bad. However, the smell can linger in the bathroom.
Before I went into hospital I researched this aspect on the forum, and learnt about a wonderful product called “Deja Poo” – it is a spray which comes in a beautifully labelled bottle and you spray the surface of the water in the loo “before pooing” and this deals with the smell! The fragrance I chose is called “Poo Pourri” (lol!) and has a delightful light, lemony smell; they are fragranced with natural essential oils.
You can see from the picture how beautifully packaged this product is. I bought both sizes – the small one will go in my travel kit. Each comes with a dear little metal charm and I am saving these to go in my art supplies. Different fragrances have different charms.
There are various products available to spray or drop into the bag after each emptying to deodorise the output, but someone else on the forum suggested popping in a single fresh mint Tic Tac and I have been doing this, and this tactic, alongside the Deja Poo, is really working, and I no longer have to breathe through my mouth!
When emptying the bag, it is necessary to clean around the opening with toilet paper. It occurred to me that since this was not coming into contact with my skin, it would be unnecessary to use the posh expensive luxury soft paper I regularly use, so I have bought in a supply of Tesco’s el cheapo soft loo paper and have a second free-standing holder beside the loo for stoma use. You do get through quite a bit and this is a real money saver!
Since coming home, my stoma is settling down nicely. I have been on a low fibre, low residue diet to allow the operation wounds to heal and for the internal swelling to subside, but the stoma nurse has advised adding small amounts of fibre to my diet now, to see how I get on. The output is a healthy porridgy consistency and apart from a couple of nights with excessive wind, when I thought I should either float up to the ceiling, or explode like the Hindenberg! – I have learnt how to “burp” the bag without emptying it – things have been going well in that direction.