There were a few things that I wished I had known before surgery, but having emergency surgery didn’t give me much time.
What my stoma will look like
The very first thing that I noticed was in the photographs of stomas in leaflets etc given to me by the stoma nurse just before, the stomas were all tiny little neat buds with exceptionally clear skin. I feel this isn’t reality and no one has a tiny bud of a stoma like that. The expectation for me was that mine would end up looking like that, but of course it doesn’t. Everyone is different too, so there are longer ones ( which I have) flat ones, fat ones, but never have I seen one like the leaflets.
You might get sore skin
I also didn’t know that the skin would take some convincing to have a bag attached to it. Itching and soreness comes along with the territory even after months you can get slightly sore. The fact that the join by the stoma can take a while to heal too, as I found out with some nights of pain where the output touched it.
Different pouch options
There are many types of bags available, not just the ones you get given in hospital, I never understood the procedure for trying them out, so was pleased to find that you could ring up for samples.
When I first had my stoma I was terrified of getting a blockage, there was a huge list of foodstuffs that could cause various problems so I was totally wary and scared for months. I didn’t need to be because as I got better the things that I could eat got better too, my stoma got used to passing them. I would always chew as much as possible but remember some mushrooms coming out of the stoma in slithers. It never hurt though, it was just strange seeing it. I still avoid raw vegetables and fibrous foods, you get to know what suits you and what doesn’t. Peas and baked beans are a bit of an issue for me, I still eat them but only in moderation.
Follow up appointments
I remember being told after surgery that I would get an appointment through in about six weeks. It took much longer. This is a panic because you are new to all this, so not getting the appointment through in the time they said is a worry. You need to know that what you are doing is ok and not causing problems.
Looking after your mental health
I didn’t’ realise how tired you would be after surgery and how teary too. I feel we need more of a counselling session before leaving hospital, having a stoma is a massive change to your body and self esteem and it takes a while to adjust to this new way of living. This is especially true if you have an issue with the stoma or surrounding skin, life can be quite traumatic and I feel that you could easily take a nose dive in mental health. I took a dip into depression when things went wrong and had to arrange my own counselling so by the time I got an appointment, which was many months, I had struggled on my own with my worries and thoughts.
These things sound scary and if you are prepared before surgery and join a group and read as much as you can, get yourself into a healthy way, you can overcome this major surgery with knowledge and a positive mind.
You can also follow Clare on her blog.