Seeking Dietary Advice for Living with an Ileostomy

Foods that I've eaten in the past with my ileostomy seem like I cannot eat them anymore. The food seems to get stuck in the pockets of my small intestine, not to mention my adhesions. I miss all the foods I used to enjoy: raw vegetables, raw fruit salads, trail mix, peanuts—the list goes on. I am looking for some advice on what to eat that will not have a negative impact on my stoma. I would like to get back out there and do the things I used to do, but I just can't get past this ostomy, and I've had it since 2004. It seems the older I get, the worse it gets. HELP

Hi pmgjag,

You've come to the right place for support. Our community is full of people who understand exactly what you're going through and are ready to share their experiences.

When it comes to diet with an ileostomy, it can be tricky, especially with foods you used to love. Many find that cooking vegetables until they're soft or blending fruits into smoothies can help. You might also try introducing new foods slowly and in small amounts to see how your body reacts. Some people find that avoiding high-fiber foods like nuts and seeds helps, while others have success with them in moderation. It's all about finding what works for you.

It's great that you're reaching out for advice. Being part of this community means you'll find plenty of support, information, and some really cool people who can help you navigate these challenges.

If you haven't gotten over it in 20+ years, you're going to have a tough time now. Life is what you make of it. Adjust as you need to and move on; life's too short to dwell on yesterday.

But.........................AlexT, dweller in the state of my favorite original Eagle. Yesterday, all my troubles seemed so far away........

I can feel for this person. What good are having memories for anything if one has to be selective? Life is what you make of it. Some people get to be masters, while some continue in apprenticeship.

Hi there. Are you mourning those foods? After 20 years, I am sure you have found other stuff to eat. But be thankful for what you can eat. There are some on here that can't eat food at all, and some are beyond extremely limited to one or two things they can eat and even have a hard time with that.

Hey there - don't let a stoma/pouch define who you are. Go enjoy yourself making every day count. You've got this —

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi from New Zealand,

I can completely empathize. When I got my ileostomy 28 years ago, I started finding it harder and harder to eat. And the few things I was allowed to eat didn't get absorbed at all, so I was constantly battling with malnutrition. After more than 50 operations, I learned everything I never wanted to know about adhesions. The doctors tried numerous times to remove all of my adhesions without any success.
So I was given a feeding tube, only my tube kept leaking, and after a while, my skin started deteriorating, and then it started becoming infected, so the doctors in the hospital decided to pull my feeding tube out. They then decided to try giving me 6 x 200ml bottles of Fortisip a day - which is nutritionally complete. (After having a Barium Swallow test, they found out that my 3.5 meters of small bowel had rapid gastric emptying or dumping syndrome, as I'd eat something and it would generally all come out after 15 minutes.)

I was originally allowed to eat for pleasure for a while. But every time I ate something, I'd end up in so much pain from anywhere between 8 hours to 72 hours, of 10 out of 10 sort of pain.

Yes, I still miss eating, just not as much as I once did. Sometimes I am really tempted if I cook something for my husband that smells so fantastic that I'm really tempted - but a quick reminder of what eating does to me by my husband John will stop me from actually eating anything.

I used to love eating. But enjoying eating something for a few minutes is not worth many hours of pain. The only things I can eat now are things that will melt in my mouth....

The only advice that I can give you is to see if you can see a gastroenterologist and also talk to a dietician. Find out what you can eat and what gives you problems. Don't try to live like you did before you got your ileostomy, as you will only end up having repeated bowel obstructions.
Sure, there are people with ileostomies who can eat whatever they like - but not all of us have that kind of luck.

I know and can fully understand that you'd like to go back to the way things used to be before you had your surgery. Unfortunately, this is the way life decided to go for us, and there's nothing we can do except accept the situation we now find ourselves in.

But like my family keeps pointing out to me, life is not fair, and sometimes that means accepting our new reality. Eating was something I once did as it gave me comfort, and I never ever dreamed that I'd get to a point where I have basically gotten used to not being able to eat, even if that makes it all the harder when we get invited to stay for dinner at someone's home, which makes me acutely uncomfortable, as I no longer join people at the dining table because I don't want to watch everyone eat all the foods I once loved to eat but now can no longer eat.
Some people are very understanding and will go out of their way to make sure that there are things I can drink instead, while other people do not have any consideration and deliberately seem to enjoy making me feel as uncomfortable as they can by not providing me even something to drink - so those types of people I no longer visit (and yes, many are family who desperately cling to the hope that I am making this all up because it's all in my mind - and I don't need those types of people in my life.

All the best, take care of yourself.

Gracie

You don't have to be selective about your memories, but you don't have to live according to them. You can never move forward with anything if you don't take a step in that direction. If you don't want to move forward, then don't complain about where you're at. None of us wanted to get sick, but dwelling on it, especially if you're technically healed, does you no good. I ache here and there every day, have a hernia, neuropathy in my feet, etc., but I keep going forward by choice because I know it's better than where I was when I was truly sick. Dwell on it or move on; it's each person's choice on how to live. The sun and blue skies are out there for everyone to enjoy, so why stay stuck looking at the clouds?

Hi Pmg, when is the last time you had a scope done through your stoma to see how bad the adhesions are? For me, it was Crohn's scar and adhesions that were slowly causing me problems until even eating soups or yogurt was an issue, so I had resection surgery and now pretty much eat anything.

AlexT, I know you and I don't see eye to eye on much, or so it seems that way. But I agree with you on this. I have way more than enough share of problems, and I choose not to say much about them on here, and I am fighting through them each and every day, and I am pressing forward. Dealing with them and trying to make the best out of the hand I was dealt. Accepting it.

That's the beauty of the community bond and understanding here, Beth.

We can agree to disagree.

And be honest about it. And more importantly, respectful about it.

I don't think family and friends even get that, you know?

If you miss peanuts, do you like peanut butter? That is one alternative. You can make a snack mix without peanuts in it, with Chex mix and crackers, and season it how you like. You can make muddy buddies for that peanut butter and chocolate taste. For fruits, try smoothies. Make it with frozen mango and a banana; those are easier to digest. Eat avocados. Cook your veggies and skin them. Try zucchini lightly sautéed in a pan. Well-cooked broccoli, then put it through the food processor. These are a few ideas. Find things that you enjoy that you can digest. Try spinach pasta. Not spinach with pasta, but spinach in the pasta. Like noodles that are green. Sneak in veggies. Try the new veggie Cheerios. The blueberry banana ones aren't too bad.

That was very helpful. I am going to give some of that stuff a try for a little variety in my diet. I do have a magic bullet that I can make the smoothies in, and I like those Chex mixes. I can put different things in them, like you said, and still enjoy them. Swap out one thing for another.

Even without a stoma, our tolerance for food changes. What I used to munch when I was in my 20s didn't go down so well in my 50s.

I'm actually more healthy since I got a colostomy in 2022. I now don't eat fried food, junk food like potato chips, cut way back on candy, and no more Cokes. I also eat far less. I'll have an Ensure for breakfast. No lunch. Then a nice dinner of salmon, chicken, or steak. I lost 66 pounds back in 2022 before my surgery. I gained 30 pounds back and have maintained it. Two important things I learned: how to remain hydrated, and chew, chew, chew.

Have you had a colonoscopy lately? As Ron in Mich stated: you need to get checked via a scope.

Chex mix is good, sweet or spicy. If you make it sweet, you can add peanut butter M&Ms to it to get that peanut flavor you are craving. You can add different crackers to Chex mix and make cheesy or salty Chex mix. You can add spicy mini chips to it to make it spicy. There are lots of ways you can go with Chex mix. Smoothies are good too. I have a Magic Bullet too. I use it to make chicken quesadillas. I grind up the chicken (cooked) and cheese in the Magic Bullet and then add it to the tortillas and cook them in a pan till the cheese melts and the tortilla turns golden on both sides. Yum.

You may want to try a low-residue diet:

https://www.verywellhealth.com/low-residue-diet-tips-797574

G-Day pmgjag,

You talk about a lot of things you like, things that I know now after 3 years would cause a blockage, so I give them the flick. But I love peanuts but cannot eat them, so I buy smooth peanut paste. I eat bucket loads of it with no blockage. As for all the other things you talk about, all you have to do is chew, chew, chew, and after chewing for 2 hours, chew it a little bit more. OK, time to look for something sensible. Try everything in small amounts and see how you go; a 20-year veteran should be all over this.

Regards, IGGIE

I eat very cooked vegetables in small portions and very little raw vegetables. Eating too many raw carrots once sent me to the hospital with a blockage, and so did a cup of cauliflower rice. I recently vetted a surgeon that I have under my wing just in case I ever need surgery in the event I have a blockage. The surgeon warned me to keep away from dried fruit, especially apricots and even raisins. She said that in the intestine, they can expand so much that it is possible to cause a blockage. She said raisins can grow to the size of a grape in the intestine and cause a major problem. Just eat roughage - vegetables and fruit in small portions.

I am with you on this and know where you are coming from. I have to be very selective in what I eat. What works for me today does not agree the next. It's really a trial-and-error situation. I have days that even my first glass of water will immediately be my downfall, and the next day absolutely no effect. Just know there are others out there that are battling the same battle. And if all fails, a serving of plain white rice always does the trick (at least for me). I received my ileostomy 51 years ago.