I have been given a provisional date of 21st January 2025 for a total pelvic exenteration and creation of urostomy and colostomy. On 7th January I am also having an examination under GA, for the team to look at how it all looks "in person", as well as looking if I need a tummy tuck at the same time as the PE.
I lost 12 stones about 3 years ago and it's left me with saggy skin on my tummy. Has anyone else had this?
The thought of the initial PE surgery and creation of 2 stomas, is overwhelming. The thought of this extra potential procedure to recover from seems overwhelming. My surgeon explained that it was to give me a better quality of life with my stomas, which I understand.
I am type 1 diabetic and find healing is slower for me and GA takes me longer to recover from.
In relation to wearing clothes at work, it’s going to be a long time before you recover enough to go back to work. By the time you do, you should be used to having stomas and managing them.
You will be able to get specialist stoma underwear on prescription, a few pairs a year, or you can buy your own but I have never bothered with them. Initially, I had lots of leaks from both bags, and while it’s ok washing underwear which has been wet with urine, it’s a very different story with a colostomy and staining! My underwear goes straight in the bin after a colostomy bag leak-I don’t even try to save them-so cheap underwear is useful at the start in particular.
Elasticated waists are easier with trousers-I only wear trousers and it’s easier to have elasticated waist trousers which are high enough to go over both bags. I personally don’t wear anything with zips or belts as that wouldn’t work for me. Dresses are easy to wear if you like them, But it’s really a case of trial and error as I’ve said before-you can’t make assumptions until you’re actually living with the bags, and 2 bags are more of a challenge than one. You will have no control over the output in either bag, which can lead to some unpleasant accidents, so clothes which are easy to change quickly are better.
Sarah xx
Hi Lee75,I have a urostomy and wear trousers most of the time.I got measured for the stoma wearing a pair so the stoma nurse could see where the waistband sat.I still wear the same kind of clothes as before but have added tunic tops as they are comfy.I don’t wear special underwear but I do wear a stoma belt if I’m doing anything heavy in the house or garden.It’s amazing how quickly you can adapt to life with a stoma.It’s important to keep checking the stoma size at the beginning as they do change shape and shrink down.You have to make sure the hole for the bag is the right size else you will get leaks.Once your stoma has settled you can order pre cut bags if you prefer.Good luck with everything.Love Jane xx
I’m a big fan of longer tops Jane-I like to know my bags are covered, and tunic style tops and long tee shirts are perfect for me. When I’m on holiday, the comfiest items for me are long line loose vest tops and cropped leggings.
Sarah xx
So am I Sarah.I used to be 5’ 7” but have lost height due to arthritis.I take after my dad who was much longer in the body than the legs.I have a long back so I’ve always preferred longer tops because I hate being cold in the middle.The tunic style tops are ideal as they are so comfy and cover the stoma well.I do wear tighter tops sometimes.I can still wear trousers with zips but elasticated waists are much easier.xx
If I want to wear something that looks like jeans, I’ll wear jeggings rather than denims with a zipper.tailored trousers would be a no from me with a fixed waistband. When I was working, pre stomas, my favoured workwear was something like a fitted sleeveless shift type dress and jacket but I couldn’t wear something like that nowadays! My bags would definitely show under something like that-a colostomy bag can fill extremely quickly and even emptying my urostomy bag would be a challenge! I’m all for an easy life now with my clothing,
Sarah xx
Hi Winkers, that's been my mantra since I retired early 24 years ago. (I was lucky enough to be paid off from a high powered job when my boss tried to bully me, silly man). I wouldn't have found a stoma easy those days in smart skirt suits, tights, heels and 14 hour days and before I lost 7 stones. It was bad enough getting varifocals while all the people (all men) around the table were at least 10 years younger!
Now I'm older and fitter even despite AF, osteoporosis and cancer. And we live quite simply. So I guess it all worked out for the best.
Latestart x
I did lose weight too years ago when I was still working-6.5 stones. Some has crept on over the years! I was much fitter then, a regular gym goer and swimmer. I would have been much more able to cope with this surgery then when I was about 50.
I think it’s amazing you have only had one leak in such a long time Jane! I still have leaks from both from time to time, even now.
Sarah xx
Hi Sarah,I’ve have had a few leaks but not many at all and they were mostly in the beginning.I put a bit of tape over the sides of the bag if I’m doing a lot of bending in the garden.I’m lucky to have a stoma that protrudes and that must help.I really don’t miss my bladder at all.As my sister says no more panic trying to find a loo in time which used to be a nightmare.I had to take spare clothes when I first met the surgeon as wet myself on the 40 mile journey there.I had a can’t wait card and a loo key too.xx
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