Anonymous 23rd May 2016 at 1:13 pm
So I am two weeks away from having my survey ileostomy – any advice? What to take to hospital?, recovery – starting to freak out a little. I know I will be in better place after but getting nervous?
I have a colostomy so it might be slightly different. It’ll depend on whether you’re having keyhole or open surgery. My colostomy was keyhole and I was up and walking around a couple of hours after surgery. I was sore and swollen for a few weeks but it wasn’t unmanageable. I was is hospital for around 6 days in total. I probably could have gone home earlier but they wouldn’t let me go home until my stoma had started working.
If it’s open surgery, it’ll be a little longer. I had an abdomino-perineal resection after my stoma which was open abdominal surgery and I was in hospital for 2 weeks and in intensive care for a few days after.
Top tip – Even though it might be a bit scary start looking after your stoma and bag changes straight away as the hospital won’t let you go home unless they are confident that you can look after it. A stoma nurse will go through it with you for the first couple of times and then I would take charge. It’ll make you feel more confident once you’re back at home.
Good luck! x
Anonymous 24th May 2016 at 1:11 pm
Thank you … I found out it is keyhole. So that is exciting. To know I can be walking around. I thought I would be flat out lying in bed.
hi there, I have had my ileostomy made two years in September. my advice would be go in with a great attitude, an ileostomy will be on your right side. the nurses will show you were its going to be at leave a wee mark for the surgeon. just take it easy after you surgery and its ok if you don’t adapt to it straight away the nurses will be there to help you and you will be a pro in no time.
good luck and I will be thinking of you!!
you can do it 🙂
Anonymous 27th May 2016 at 11:29 am
Great to know! Thank you I always thought it was left side – no idea why? Most days super positive but still scary. O. The upside I calculate I will save roughly 7 hours a week not having to sit on the toilet in the morning!
I’ve had my ileostomy for over six years and just wanted to wish you luck for your upcoming surgery. Each of us heals in our own time so listen to your body, whether it takes a short time to heal or a long time it doesn’t matter, just don’t push yourself too much.
Something I would definitely recommend is taking a few of your favourite pairs of trousers and trying them on before they mark you for surgery so that you don’t end up with your stoma exactly where your waistband would be, slightly above or below would be better as mine is exactly where my waistband wants to sit and I have to pull my jeans under my stoma a bit.
For the first six weeks you’ll be on a low residue diet and will be advised to gradually add other foods. But don’t worry your stoma nurse will give you lots of advice on this.
Something I didn’t realise but that scared me at the time was that certain medications can change the colour of your output, I was so relieved when I was told this as I was worried something was wrong but have since learned that output can be all sorts of colours and textures depending on what we eat.
Also for the first 6-8 weeks your stoma will change shape/size so don’t precut too many bags in advance as they may not fit properly as it shrinks so 1 or 2 in advance is enough.
If you’ve any other questions or just need some support through your surgery we’re here to help. Let us know how it goes
- This reply was modified 1 year, 9 months ago by Lorraine.
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