Anyone had ileostomy

[rosebine]

Thank this may be the one I will end up with rather than colonoscopy. Am reading that its more difficult to live with, anyone any experience?

[Neona]

Don’t know if one more difficult than other. I woke up from my debulking with a most unexpected iliostomy and it was a terrible shock. It is not really difficult once it settles down. I eat just about everything I want though cut mushrooms up into very small pieces before cooking. I find it has clipped my wings a bit as I prefer to stay near a decent loo but am ok for a couple of hours if don’t eat too much. I am told my electrolyte problems ar3 due to the iliostomy- not enough absorption of magnesium and fluids. However there are also some advantages- chemo is easier as diarrhoea/ constipation not really a problem although tablets that cause constipation, like Ondansetron, can cause me to throw up. Overall it is pain -free and manageable once you have found the right stoma bags for your needs.

[fair-rosamund in reply to Neona]

Hi RosebineI've had an ileostomy for 5 years following emergency surgery for complications of ulcerative colitis. It's fine - and I have no problems with diet. As previous rely said mushrooms need to small pieces and make sure you chew butter beans thoroughly. You will find out why software developers call data that comes in and goes out with no changes 'sweetcorn data'. Stoma nurses are fantastic and will give you all the help you need. Truthfully, in some ways it's preferable to having the colitis.🙂

[rosebine in reply to fair-rosamund]

Thanks for the info. Im worried about having to change the bag very frequently if I have one. Must make any trips out very difficult, particularly as there are virtually no public loos even if the existing ones werent shut due to covid.

[BanksiaRose in reply to rosebine]

Hello rosebine. I’ve had an ileostomy for nearly 3 years following debulking surgery. As said before the stoma nurses will guide you and support you in hospital and afterwards. I change my bag every other day as it is drainable, and empty it around 4 times a day and once in the night. It all becomes routine. I can eat nearly as before but chew very well. In the early stages I needed the occasional Dioralyte to boost salts but that has all settled. Don’t be scared of it, let it be your friend! Best wishes

[fair-rosamund in reply to BanksiaRose]

Agree with BanksiaRose. I change bag every other day usually in the morning when showering and empty it 3/4 times a day and once at night. Usually need to pee and just do the bag at the same time - a feature that's probably easier for women in public loos! Possibly would not have to it at night if I had main meal middle of the day and not in the evening.