Stoma versus ileostomy

Hi Fraser1 

So you have a temp colostomy at the moment? If you were to get a temp ileostomy you would still be able to do all the things you have been able to do. You may find that the output from the ileostomy is looser and more frequent, and you may need to be more careful with what you eat to avoid blocking, but you should be fine to do everything you have been doing.

Sarah xx

Hi Fraser1. Do you mean your colostomy is being changed to an ileostomy? An ileostomy is positioned in your small bowel so your output is not fully digested whereas a colostomy is in your large bowel so your digestion is more complete 

My ileostomy was recently changed to a colostomy and the difference is that with a colostomy you have less frequent output and the output tends to be firmer, though I find that is not always the case.

Hope this makes sense. I'm sure someone else will explain it better!

Hi Fraser1

If you already have experience of a colostomy I don't think you'll have difficulty in dealing with an ileostomy. I've had mine for just under 2 years now and it's become second nature. Yes, the output is looser and you empty the pouch rather than changing it. For me, that's around 5-6 times a day (usually when I'm going for a wee anyhow) . It's quick and easy. The pouch gets changed every other day.

Food wise I find that I can eat everything I did before. Be careful in the early stages though - beige diet initially and then introduce new foods gradually. And chew really well!  Drink a bit more too as you lose more fluids and may become dehydrated.

All the things you've been able to do with a colostomy you'll still  be able to do with an ileostomy. Travel, eating out, swimming etc.

Just ask if there's anything else that's bothering you. 

Good luck x

Thank you 

Hi wonder if someone can help as said I have going to get a temp ileostomy on the 6th off April .I am looking for deit information for the first few weeks after op any advice would be great thanks in advance 

Hi Fraser1

Stick to the beige diet initially. So, things like chicken, fish,  macaroni cheese, yogurt, stewed apples, bananas, rice, custard white bread, potatoes, mashed root veg. After a couple of weeks start to gradually introduce a bit of variety such as mince (spaghetti bol or lasagne, just for the extra bit of flavour), casserole etc. Try to avoid anything with pips or skin initially. Once you're past the first few weeks you should then be able to try other stuff. I was desperate to get more fruit and vegetables and a retired stoma nurse told me to start with an egg cupful at a time to judge how it goes. Just take it carefully, 1 food at a time.

Over time I've discovered that I can eat absolutely anything that I enjoyed before. Initially, eggs really upset me but I find they're OK now. I'm still careful with some things - e.g. I peel apples and chop mushrooms up a bit and chew nuts really, really well but that's about it thank goodness as that beige diet is so boring.

Hope this helps but just ask away if there's anything else.

Thank you that is most helpful dreading the ileostomy but if what I have to have  to get through this so be it ! As it’s a temp don’t know how long I will have it surgeon says 8 weeks depending if I need an mop up off chemo , but he also said the reversal is not an emergency op so have to go the waiting list  wondered how long other people waited ?

I think that reversal times vary between health boards.  The sooner its done seems to result in a better outcome - although everybody is different. I was initially told a wait of 2 years at least which horrified me initially, but then made me determined to just get on with life and learn to live with the stoma. In all honesty that happened really quickly and became second nature. After 14 months waiting I was asked if I'd consider having the reversal done at a different hospital (over 80 miles away) as they were trying to clear the backlog. By this point though, and after further discussion with the colorectal nurse and weighing up all the pros and cons in relation to the likely success I decided against having the op. I don't have any regrets.

By having a colostomy already, and coping well with it, you're in a good position for dealing with the ileostomy irrespective of whether it can be reversed or not. Have the hospital given you the pelvic floor exercises that will benefit you hugely if the reversal is possible? If so, I'd start these now as they will help you to regain bowel control.

If there's anything else I can help with then just ask. And good luck with the upcoming op.

Thank you again very helpful information sure I will think off some more questions over the next week things just keep popping into my head !

Hi bluebird I just read your story can I ask was your op done in WGH in Edinburgh that was really good you didn’t spend to much  in hospital! Fingers cross that I have a short stay I really like your attitude with the stoma it’s got me thinking about mine and the reversal ?