Seeking Advice on Adjusting to Life with an Ileostomy

Hi, my name is Michelle, and I am 43. I am from South Wales. In February, I had a hysterectomy, and they nipped my bowel in surgery, which caused me to have an ileostomy, which I had 3 weeks ago. I am trying to get my head around having an ileostomy and what foods I can and can't eat, and also how to cope with it mentally. Any help would be great.

Hello Michelle

You have a lot of topics there that will take a large reply. I am surprised the hospital didn't send you home with some information about your new ileostomy. Have a read of this, then come back with your specific concerns, and the crew will do their best to help you out.

https://www.nhs.uk/tests-and-treatments/ileostomy/recovery/#:~:text=Recovering%20from%20an%20ileostomy,the%20change%20in%20your%20body.

I've heard this story too many times!  The surgeon injured your bowel during hysterectomy surgery, necessitating an ileostomy???  Get a lawyer and sue the incompetent surgeon.  You don't have to accept this kind of carelessness with grace.  And stick around this website, as it is full of people who can help you cope.  Good luck to you.  

Food bins and those foods to avoid lists do more harm than good, giving people a fear of food for no reason. Eat everything you've always eaten, just in small portions at first.

Presumably, your ileostomy will be reversed at some point?

If you are fresh from surgery, be careful at first. Your system needs time to heal. Add back foods slowly and in small amounts and see how your system reacts. That's the best way to know what you can and can't eat.

Be sure to stay hydrated. Someone with an ileostomy will be along soon to give advice on that.

My Ostomy Journey: April | Hollister

The kinds of things I was told to avoid are things with seeds and skins. Peel your potatoes. Cook your veggies really well. Try things in little portions and see how it goes. I was told to avoid nuts too and instead have creamy nut butters, like creamy peanut butter. The rule of thumb is chew, chew, chew. Chew everything really well.

Welcome Michelle

Sorry to hear how you now have an ileostomy, but hopefully it will be reversible in the future for you! Great group of knowledgeable people and lots of information.

Sorry for the late reply..... my ileostomy is permanent, but my bowel was really badly damaged...... this is the only way I can go to the toilet..... it's really hard 😪

It will vary massively from individual to individual, but I've personally found that nuts and seeds are a big no-no (with the exception of pistachios). Also, onions, peppers, peas, and sweet corn I can no longer digest... and you will probably have to be careful with fruits. For instance, too much citrus will play havoc with your skin, and things like bananas should be eaten in moderation to avoid blockages.

I had a colostomy, which in May was taken down, and a temporary ileostomy was created. That has been a real challenge to manage for me. It seems like everything becomes liquid no matter what. It's irritating to the surrounding skin. My wound nurse helps me take care of it; I find it burns frequently. I'm sorry that happened to you; I hope yours can be reversed. If not, there are people here who understand and will help you through it. My surgery is next week to take down the ileostomy. You are not alone here. I've only observed kind, helpful advice the short time I've been on this site. Good luck to you!

So sorry to hear your ileostomy is permanent! I recently had surgery for a colostomy, which is permanent. For some reason, we have been chosen to take on these extra challenges and expenses, but we all learn to adapt one way or another. We are lucky to have this group to help each other out!