People I talk to are often intrigued when they realise that my surgery was a total proctocolectomy so I actually have a Ken butt; no rectum and my bum sewn up completely. It might seem strange not to have a rectum, but for me, being able to poo via my ileostomy is a total blessing.
I have already given details in a previous blog, just over a year ago, about the adjustments I had to make having my Ken butt so I would just say to look for it here on the website. Here, I just thought I’d share some reflections with you on how my toileting process now is so much better than what I was suffering with before.
Pre-Ken butt:
- I would have to be prepared for impromptu dashes to the nearest toilet to empty my bowels – experiencing pain, cramps, bleeding along with chronic diarrhoea. It caused me so much anxiety and everywhere I went, everything I did, I became obsessed with finding the toilet in case I needed to go suddenly.
- Sometimes I suffered a completely spontaneous and uncontrollable bowel movement and I soiled myself. This was so upsetting and I was done for the day afterwards; I couldn’t go out, I missed work, I was always miserable and/or angry.
- I suffered the most horrendous piles or haemorrhoids owing to straining and prolonged sitting on the toilet. Often I was in the bathroom for what seemed like hours, too afraid to get up in case I needed to get back there straight away. I was once literally at the point of having surgery to remove my horrendous piles as they were causing so many problems but after anaesthesia the surgeons decided that my ulcerative colitis was too severe for them to continue, so I had to live with them for a whole longer.
- I used so much toilet paper and a lot of toilet wipes – this, in turn, affected my skin making it extremely sore.
Post-Ken butt:
- I no longer have to rush to any toilet; I can ‘poo’ pain free and my stoma does its job brilliantly. If I do have a small blockage, or something I’ve eaten disagrees with me, I am able to cope easily – I may have to empty my bag more frequently so I would need to manage that. My advice would be to be careful with your diet and find out if there is anything you would be wise to avoid eating. STAY HYDRATED as that is key to you staying well and invest in some diarrhoea relief instants if you need to, just to alleviate any anxiety if you should have an upset stomach.
- If my stoma is more active than usual, I have to take steps to manage it. As a bus driver, I know where the toilets are on my route so I make sure that I empty my bag on each available opportunity. My advice here would be that you need to be organised and methodical, making allowances for additional trips to the loo. Always have an emergency changing kit with you so that if you need to do a bag change, you can do so worry-free.
- I don’t have to worry about piles any more! Having said that, it is possible that my stoma could get sore if I don’t take time to clean it properly or if I have a bag leak, but that can be avoided if you’re careful. I have chosen to wear a two piece bag which I find far easier for my needs; I can swap the bag part over but the back plate can stay in place for several days, if necessary. I use the eakin freeseal behind my baseplate to make sure it’s nice and snug next to my skin and so it’s additional protection against leaks.
- Cleaning up is a lot easier and I spend a lot less time in the bathroom. I use toilet paper to clean the outlet if I’m just emptying my bag and if I’m changing it, I clean the area around my stoma with dry wipes and water – making sure that everything is perfectly clean and dry before attaching my new bag. It takes less that 5 minutes. If I do a complete bag change where I change the baseplate as well, then it takes a bit longer obviously, but I am happy and comfortable and more to the point pain-free. I would advise you again to carry a spare kit with you if you’re out and about so you don’t have to worry about changing your bag in an emergency.
- Finally I would say to my fellow male ostomates with a Ken butt, it didn’t occur to me that I would still have a prostate gland and would still need to have prostate checks. Even though the usual finger method of checking is now impossible, we must still make sure we are screened regularly through having a simple blood test.
I certainly have no regrets whatsoever about having my Ken butt surgery. I am pain free, I can exercise, go travelling and go out to social events without any worries. I have been able to take back control and that has given me my life back.
