Ileostomy Diet - Realistic Expectations and Long-Term Adjustments?

Hi all, I'm hoping to hear from as many of you as possible with ileostomies about your diet. I have had a colostomy for ten months now but am waiting for surgery for a loop ileostomy. I have to admit that my major concern (except for the risk of surgery itself) is how it will affect my diet. I have read many posts from ileostomates (is that a word?) about things they cannot eat and problems with so many different foods. I count food amongst the very top things in life that give me pleasure and I have been blessed with the ability to eat pretty much anything. I also love to cook. I am also a healthy eater and cannot imagine a life without the things that I love to eat and that are good for me. I fear that my ostomy nurse is telling me what she thinks I want to hear or at least giving me the "best case scenario" of outcomes. She says the goal is to have me back to "normal eating" within eight to twelve weeks or so. And yet I get the impression from numerous posts that there are many of you out there who are long out of surgery and still not eating "normally". My diet has always been full of fiber, lots of vegetables, fruits, nuts, and whole grains. How realistic is it of me to expect that not to change? I know there is always a period of healing and adjustment and that it may be slow and gradual. I can live with that. So how many of you with ileostomies are able to eat anything and how long after surgery? How many of you still cannot eat "normally" after months or years? If you can't eat a diet with lots of fiber, how do you maintain a healthy diet? All replies will be greatly appreciated.

Terry

Hi Terry - I'll start by saying that this is a great post question. I've had an ileostomy for over 20 years and generally speaking, I can eat almost anything, but have to be very very careful not overeating types of foods that simply won't digest well. Other people may have a different take, but generally, you can eat foods like vegetables, high-fiber, whole grains, but you need to be very careful because those are the types of foods that simply don't digest very well and can cause a blockage. Some people with an ileostomy might be more tolerant of certain foods while others may not. Personally, for me, I need those raw vegetables cooked so they're soft vs raw. I can't eat more than a little bit of coconut or peanuts, else I will get a problem with blockages. Break out the blender and make smoothies that include fruit and vegetables and you can have all you want that way too. Last bit of advice on eating... Can't overstate how important drinking lots of water is for you. Get used to that. Especially if you like coffee, caffeine... You need a little extra water in your daily routine to prevent yourself from dehydrating. Also suggest adding something with citric acid like orange juice or lemonade once in a while... Those types of drinks help reduce your risk for kidney stones pass by dehydration. I'm no doctor LOL, just years of experience talking here. Wish you good luck and good health!

Hi Terry,

I hate to always be the "nay sayer" on here, but I don't think, no matter how many ostomates reply, that you'll truly know how your situation will relate. There are so many factors that play into your question that each reply will have to be taken with a big grain of salt. I suspect you're really just looking for some general good news, but everyone's body is different. Things like any underlying conditions, medications, bowel length that's fully intact, etc, etc) all play into it. When they form the loop and then open that section of your terminal ileum up to make your stoma they will be removing and tossing out a section of it to make the stoma. Whatever role that section of your ileum performed in your digestion........now won't be there to do that anymore. Consider this......if there is nothing wrong with your small bowel before your ileostomy.......then why would you need to restrict your diet in any way. If there is no stricturing, diverticulitis, Crohn's or inflammation of any sort......you should be able to eat anything, and as much if it as you want. There's almost no digestion that takes place in the colon......its primary function is to absorb water and salts. So technically, you should be able to eat whatever you want. If you eat something that didn't normally fully digest pre-op.....it still won't be digested when it exists at your stoma, instead of traveling on to your colon. If you've never had a blockage of any sort due to problems in your small bowel.....there's no reason you'd have one post op.......excessive fiber will just end up in your bag. So it all comes down to what makes you different from every other ostomate that replies to this post. If you know that.....and what issues you still have with your bowels and digestive system....you can make an educated guess regarding what you can and cannot eat. But since you can never be 100% sure........I'd be careful eating anything post-op, no matter how many reply saying you can eat something. Just because they ain't you.

Regards,

Bob

Hi Del

I can eat anything I wish, high fiber like apple and mango just slows the whole process down considerably so I just don't do that in the evening, otherwise all good.

I agree with these other guys, most particularly LetsGoGolfing.  I would say exactly what he said.  I avoid raw veggies for the most part, but otherwise it's eat up.  The water intake is particularly important.  I've screwed up my kidneys because I didn't know that the ileostomy surgery would result in so much dehydration.  Now I drink 96 oz of water every day and my kidney function has remained stable for a long time.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi all, yup I agree with all of the above, especially the part of "we're all different". I have Crohn's and had my first ileo for 33 years. And my stoma had shrunk down to the diameter of a pencil, so I was very restricted on what I could eat. Now, with my new stoma, it's like a fire hose. It almost works too well and foods pass through it no problem. But I still avoid raw veggies, coconut, pineapple, and so on. But I make fruit smoothies and I make salsas of greens, especially this time of year with the farmers markets. Good luck with the upcoming surgery and as for eating, try a little and see how it goes.

I've had an ileostomy since 1989. The only thing I can't eat is pineapple. 5 days in the hospital last time I ate it with Dr's threats of surgery!

That doesn't mean to say that you or anyone else on this site can't eat it. What's right for one is wrong for another. Just try everything you like in small portions until you know and feel safe eating it.

NEVER let someone else's problems with food stop you from trying something, and always try it at least 3 times before giving up on it as adhesions quite often get the blame for food blockages.

You won't feel like eating much at first anyway, just take it easy for a few weeks eating a light diet and some nice comfort food.

Thanks for all this.   Luckily for me, I drink lots of water and will continue to do so!

Thanks, Bob. Very informative and helpful as I expected from you!

I wonder what the deal is with pineapple!  I've heard that from several people, also mushrooms I've heard is a bad one, never could figure that one out and raw mushrooms are one of my favourite things, oh well....Thanks.

Thanks for the feedback, love your 'fire hose' description!

Hi Axl,   So why wouldn't you eat those high-fiber foods in the evening?  

Terry

Hi Henry, It occurs to me reading your post that the medical profession's knowledge about ostomies has grown along with you and your situation over the years. It's terrible that you were not told that hydration was such an important thing after your surgery. Did they not know that at the time? I guess us recent ostomates should be thankful we didn't have to experience the "bad old days". I remember one of your posts where you described your pouch as the Lexus versus the Model T you started out with. It sounds like things were a lot more challenging for ostomates then. I try to remember that when I'm having a bad day.

Best regards,

Terry

Terry,

If you get a minute, read this article... It's about the history of ostomies and is a bit fascinating. And yes, we have it pretty good today! Back when the first ostomies were performed, they put the stoma in the lumbar region of your back! Think about THAT for a second. Then they moved it to the inguinal region (where the top of your thigh meets your abdominal muscles). You can't make this stuff up! Enjoy!

https://www.nursingcenter.com/journalarticle?Article_ID=767816 Journal_ID=448075 Issue_ID=7677

Regards,

Bob

Wow, pretty amazing stuff.   And I thought we were living in tough times!

Yeah, I was thinking the same thing before I read that. Funny thing... after my "short gutting" bowel removal surgery I was talking to one of the ICU nurses when I was brought out of it and she mentioned that I was lucky. I asked why she thought that... and she replied that I came through just fine, but had it been just 10 years ago I'd be dead. That was a bit enlightening, as 2004 sure seemed like "modern times" to me. Actually, now that I think of it... my TPN coordinator said basically the same thing. Not very long ago TPN would destroy your liver pretty quickly... after which you died. I guess the phrase "Timing is everything" has some merit.

Regards,

Bob

OK, now you've got me confused!  I had to Google TPN and all I came up with that made sense was Total Parenteral Nutrition which sounds like basically feeding you through a tube.  Why would this destroy your liver?  When my husband was going through chemo and radiation for cancer they wanted to put him on a tube because the nausea makes it impossible for some people to eat.  He declined and got through it but lost 35 pounds.  Anyway what am I not understanding?  Did you have to be tube fed for a while?  That's obviously not the case now right? But back to the subject at hand, without actually knowing the history of ostomies I figured early on that my perforated bowel at one point in the not too distant past might have ended up being a death sentence. It's good to count our blessings once in a while, especially as they seem in such short supply lately!  While I've got your attention, on the subject of eating and ileostomies, so many people mention raw veggies as a no-no.  Does that include tomatoes?  I'll go into withdrawal if I can't eat tomatoes, and I mean fresh sliced tomatoes.  How do you do with those? 

Terry

Hi T,

TPN is given intravenously through a PICC line or port. It's not a gastric tube (G-tube) that is inserted into the stomach. Liver failure is one of the most common complications of TPN. It's complicated, but here's what Wiki says about it: "TPN-associated liver disease strikes up to 50% of patients within 5–7 years, correlated with a mortality rate of 2–50%. Onset of this liver disease is the major complication that leads TPN patients to requiring an intestinal transplant." I can attest that my liver function numbers (AST, ALT, Bilirubin, Alk-Phos) went through the roof during the year I was on TPN. And it took almost another year after I got off TPN for my numbers to return to normal, although my bilirubin never came all the way back down even 6 years later. If I had to stay on TPN long term, the game plan would most likely have been to wait until my liver failed and then be given a liver and small bowel transplant (assuming the organs were available). Let's just say if I had to go down that route, I'd most likely not be here today typing this. Obviously, lots of progress has been made with TPN formulations... but liver problems are still a big problem.

As for tomatoes... I can eat them without any problems, but the issue with them is the skin and the seeds. It's hard to digest both. The interesting thing about fruit (tomatoes are fruits) is that as they ripen, their starch breaks down making them easier to digest... but as they ripen, their sugar content increases, causing dehydration in us folks with shortened small bowels. Sometimes we just can't catch a break!

Regards,

Bob

Oh my gosh, Bob, a year is a long time to be on TPN. I was on it for a month after my ileostomy and was so glad when they removed the PICC line.

Ange

Hi, what you can or can't eat may have more to do with the condition that caused you to need an ostomy in the first place rather than the ostomy itself. That being said, I've had an ileo for 17 years and when I was in full remission from my Crohn's disease I didn't have a lot of restrictions for foods. BUT some kinds of foods affect the thickness of the output and for me at least thicker output means a better chance of leaking. You're going to have to take some time to figure out what works for you - try everything you love but in small quantities at first to see how it goes!

Hi, for me I avoid the raw veggies and a few other things that seem to pass through me really quickly like nuts. I also avoid corn since it seems it's still around two days later. I'm a meat eater and I've only had issues with eating too much of it at one time and getting a partial blockage (don't eat a pound of BBQ brisket in one sitting!). But I think like some said, you won't really know until you just experiment and see how it affects you. The biggest change for me after 10 years with an ileostomy is that I avoid eating more than a meal or two a day and stick to protein drinks for my other meals. If I eat breakfast, lunch, dinner, I'm stuck heading to the bathroom too many times when I'm at work and people look at me funny when I make a dozen trips to the bathroom in a day.

Hi Terry... I am in my 7th year with my ileostomy.. and thankfully, have not had the blockage problem once... Here's my take.. I NEVER EAT PEAS (only canned), CORN, MUSHROOMS, CANNED BEANS, OR UNCOOKED STRAWBERRIES... AND MOST BERRIES..... AND... I only eat Roma tomatoes... which I peel and seed.... These are some of the things that can cause real problems... so I stay away from them. As for fruits... I do eat mangos, peeled peaches, and bananas... but mostly I make smoothies with fruits.. now... AS FOR SALADS.. I have not found one lettuce that doesn't scare me!.. so... I avoid salads... to a point... I just mix up some cheese.. usually Feta for taste.. boiled egg.. some tomato and salad dressing... frankly, I've come to not miss the lettuce.

By the way... I am from Australia... so I do not call it a bag or pouch.. but my JOEY... I think we all name them eventually. (My name here is Adelaide... but I am from Sydney)

Please don't live in fear or listen to everything you hear.

I had surgery 3 years ago and I eat anything and everything without issues and sometimes even chew.

The truth is you will not know what you can or cannot eat until you try it for yourself. Everyone is different and everything is trial and error. Eat what you wish and deal with the results "if" there is a problem.

Hi Bob,   I cannot believe what you have had to go through.   It's   testament to your character that you have persevered and maintain a positive outlook.   I know something about liver abnormalities myself.   About ten years ago, I was exposed unknowingly to toxic drinking water for several months.   It was before we renovated at our summer cottage, and the drinking water was pumped up into a tank and gravity fed into the house.   The tank was translucent enough to allow UV rays to produce algae in the tank water, which in turn blooms and produces a toxin that can kill you if you are exposed long enough, or just damage your liver if your exposure is short term.   It took about a year for my liver count to return to normal, and I'm pretty sure it's still not what it used to be.   I am very careful about alcohol consumption as I have found from trial and error if I try to be "normal" or the way I used to be, a few drinks on the weekend nights, my numbers will go up.   Now it's one or two drinks at most and only once in a while.   We deal with the cards we are dealt.   You have been dealt a particularly shitty hand, and yet you are still in the game and thriving.   Sorry for the lame poker analogy, I just couldn't help myself!   Anyway, I'm impressed.

Terry

Hi T,

Life is what it is... no sense bitching about it.   It could always be worse, until it can't... besides, who wants to die perfectly healthy??   Now THAT would be a shame.   Besides, if I hadn't become an ostomate... I never would have met all you wonderful people.   See... ain't life grand?   You have a stellar evening!!

Regards,

Bob

Hi Terry, when I first had my surgery (55 years ago) when I was 15, I found I was able to eat just about anything (after recovery) with the exception of coconut and poppy seeds. They served coconut ice cream at an ostomy dinner, and most of the attendees had blockages... Duh. It took time and testing and more knowledge of the digestive system than I previously had. The large intestine, which was removed, absorbs most of the needed water from the body (and compresses the stool), so without a large intestine, the output is more soft or liquid. One must remember to drink, drink, and drink some more, medicinally, not just because you're thirsty. During the first 40+ years, I was able to eat just about anything (popcorn, peanuts, raw salads, etc.) But as time went on (and I became diabetic), some food caused temporary blockages or took a long time (days) to digest and pass through. That's when I had to start paying attention to what I was eating. My endocrinologist also thought that I might have some stomach neuropathy... ??? I just learned to adjust my diet. But then last year, I started getting the "runs" every few days and lived with it until I finally went to a gastro for a new assessment. He knew what it was immediately. I now follow a "FODMAP" diet (look it up). I react to both the sugars and artificial sugars and other chemicals that are found in some foods. It's the same thing that others who have IBS have, but not having a large intestine makes us ileostomates react the same way. Lots of gas, and then the digestive tract fills with fluid, and the output becomes liquid. The loss of liquid can be dangerous, so one really needs to replace fluids. This condition isn't common or uncommon to ostomates. It just is. But it made it easier to know about it and modify my diet accordingly. I think it's "individual" in nature....and doesn't come with an "ileostomy". Just "luck" as it seems. Take it one day at a time and be aware of how specific foods affect you. There may be a range of foods that feel better and have less impact on your system...... Only you can tell.

Best regards.

Marsha

H

Hi Bob,   Yes, dying perfectly healthy would suck, as in being hit by the proverbial bus!   I too am thankful for this forum and all the great people here.   We are all in a club we didn't want to be members of but we are lucky to have each other.   Cheers,

Terry

I have had my ileo for 70 years, with only 3 dehydration incidents, 1 blockage, and a revision all requiring brief hospitalization. My diet, by choice, is very controlled. No raw fruits or vegetables except bananas and iceberg lettuce. Fruits were always my favorite, so I will occasionally eat one or two grapes, 2 melon pieces, etc. to satisfy my cravings. Same with nuts. I eat canned fruits a lot, but anything in the cabbage, broccoli, and squash family I avoid, even if cooked. Chewing thoroughly is a must! I really don't like food and only eat to stay alive, but again, I would love to sit down with a bowl of cherries or watermelon. I question ostomates who claim they can eat everything. As I aged, I've had to curtail dairy products. I have a sweet tooth and I indulge. My attitude is if it tastes good, and I can tolerate it, I'll partake. Diet choice is a trial and error thing when dealing with an ostomy. In my case, the list of foods I avoid is much longer than the opposite, which many other ostomates would find unsatisfactory, but it's worth it to me to avoid blockages, diarrhea, leakage, etc. I wish you the best!

Perfect true answer. We are all different and process differently....