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Ileostomy diet once surgery healed: how normal?

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Posted 3/27/2013 1:52 PM (GMT 0)
I see wide variations of this in the standard literature on life after an ileo. After surgery has healed, just how normal does ones diet and eating become? Pretty much normal? Just avoid a few things like popcorn and seeds? Or will even salad and fruit be tricky long term?

Any differences in that regard ref. jpouch vs perm ileo? I am assuming similar.

Post Edited (Probiotic) : 3/27/2013 7:55:37 AM (GMT-6)

Posted 3/27/2013 2:10 PM (GMT 0)
I eat everything.. except mushrooms and popcorn. Those two items are my only no nos.

salad are fruit absolutely I eat. that is the BEST thing about an ileostomy over UC and over a jpouch... you can eat virtually anything with an ileostomy.

of course, you don't want to jump straight in after surgery, but soon enough you will be able to eat anything you want!
Posted 3/27/2013 3:11 PM (GMT 0)
ddd45... Gotta say I am getting excited. I still have nightmares in my sleep thinking about the adjustment period right after surgery, but by day, with a more level head, I am genuinely excited about endng this nonsense. I happen to believe in the overall heal benefits of paleo, and, more generally, of avoiding processed food... But the degree to which, by trial and error, I now restrict my diet is ridiculous. Can't even enjoy a cup of coffee, glass of wine, or piece of chocolate or pastry anymore without paying for it with a mini-flare- will be glad to bid that adieau.
Posted 3/27/2013 3:25 PM (GMT 0)
Yes, you will be so much healthier and happier. Its just a joy to be able to eat what you want.
I too avoid processed foods. Eat tons of veggies, salads, fruits, etc. And eat a lot of meat/protein. keep thinking I should learn more about the paleo thing.

you could even make yourself some casseroles and cream soups, etc.. right now that you could stock up in your freezer for post surgery. Depending if you have someone or not to help you post surgery.. it would be a guaranteed way of eating healthy rather than fallback positions to processed foods. Just look up what is tolerated on a GI soft diet as that is probably what you will be sent home on.

And stop thinking about the short timeframe of post surgery recovery. Either think now in the present.. or beyond recovery.. when you are cooking and eating great meals, doing tons of very physical activity, and just out back living.

did you get a surgery date?
Posted 3/27/2013 3:32 PM (GMT 0)
I ate everything with my ileo (even popcorn) and I continue to eat everything with my j pouch. I did have an issue once with mushrooms so I'm cautious with them. If I have a slice of pizza with mushrooms (my fave) I just make sure I chew it to paste!

Everyone is different though. Some people can't eat certain things while others have zero problems. It's trial and error and the only way to find out is to try everything. I don't mean going to the movies and downing a bucket of popcorn, but don't be afraid to try some.....after your healing period of course.
Posted 3/27/2013 3:45 PM (GMT 0)
I eat everything except carrots. And the reason for that is because they come out really gross,lol. I never had a problem with them though. The only food I ever had problems with was fried cheese sticks. I haven't eaten popcorn in a while but when I did I always ate a piece of bread also. Kind of helping things move along. As long as you drink lots of water you should be fine
Posted 3/27/2013 4:06 PM (GMT 0)
I eat (and drink :) ) everything which is more than I ate pre surgery when I was terrified to eat/drink many things. The only issues I've had were 3 complete blockages due to eating fruit on an empty stomach in a rush (without thoroughly chewing)...I'm a slow learner...
Posted 3/27/2013 4:36 PM (GMT 0)
I may be the exception but I ate everything with my temp ileo including popcorn. This is one of those things that is highly individual. I would say that there are no universal 'no' foods but there might be foods that don't work for you. It's best, when introducing new foods, to eat them in small quantities and see how you do. And that's true with jpouchers too; there are no 'universal' no foods for us either.

Sue
Posted 3/27/2013 5:59 PM (GMT 0)
I eat everything and anything...but fish. I just don't like it and never have.

I do not deny myself food since I lived on such a restrictive diet for more than 10 years. I do use common sense and don't over do things. You might want to keep a log on how much you eat of high fiber foods just in the beginning...that way you know what your limit is on them. I did in the beginning when increasing quantities. Once I was comfortable with how my body was working I didn't keep it up.
Posted 3/27/2013 6:10 PM (GMT 0)
I'm 10 weeks out today and eating most things except raw greens, raw carrots, and nuts. I accidentally ate a sesame seed roll and suffered no ill effects so I'm no longer avoiding seeds. I haven't and probably won't try popcorn, but I quit popcorn years ago because of my teeth so I don't feel I'm missing anything. I still have a little trouble (increased gas) with lightly cooked veg, especially bell peppers, but not enough to keep me from eating them, unless I'm having an important meeting at work or something.

I will say I had my first brush with trouble hydrating -- I went out drinking then woke up the next morning for a run and proceeded to drink a giant iced coffee. I got a serious caffeine buzz and felt kind of lightheaded. I was able to manage it at home but I know now that I do have SOME limits when it comes to combining alcohol, coffee, an hard exercise.
Posted 3/27/2013 6:22 PM (GMT 0)
When I had UC I never restricted my diet because it didn't seem to make a difference. But...I did not eat very much at all because I was so sick that I never had an appetite and nothing appealed to me at all. After eating virtually nothing for over 3 months, I have been SO happy in the 2 weeks since my surgery. Already I am able to eat so much more than I thought I would be. The only things I am avoiding right now are raw fruits and vegetables, popcorn, nuts, seeds, skins....all the major stuff you are told to avoid. I'm sure I'll eventually start adding things in, but am in no rush. I will be scared to death when I do start eating new things, and for now I am loving being able to eat, and actually being hungry and enjoying food again. You will not believe how much better this surgery will make your life!!
Posted 3/27/2013 7:08 PM (GMT 0)
i eat everything. some things can be very problematic, but only if i eat a large amount of it, like fresh carrots, mashrooms, rice - in a big amount will, with no doubt, cause me a blockage. but i can eat them in small amounts. rest foods i can eat as much as i want with no prob, including popcorn, salads, fruits, grains and nuts even if i eat 1 kg won't cause me a blockage. i enjoy food much more now than before my ileo.
Posted 3/27/2013 8:00 PM (GMT 0)
Thanks so much, guys and gals. Great to know. I realize all too well that many with UC (and Crohns) never noticed any beneficial effect on symptoms from special diets of any sort. In my case, a sort of low carb paleo SCD hybrid has made a big difference, but only in the sense of horrible flaring vs constant never-ending simmering- which is something, but diet has never given me a med free remission. Part of me is now so diet obsessed to avoid flaring that I cant help but be nervous that things that I eventually had to eliminate- like homemade or greek yogurt, or cheese, will still be a big sensitivity issue with the ileo owing to the small gut and not just colon. But since All my inflamation (other than a backwashy few cm on ilium) is pancolitis in the colon, I hope that I can finally stop being so obsessive and kiss those restrictions goodbye.

PS yes surgery scheduled for just over month from now- I actually had the willies and cancelled it , but then rescheduled it. To be honest, still having nightmares as the surgery approaches... I just need ti get this done so I can move on with my life. Once it is done I want to be a poster child for it, knock on wood.

Post Edited (Probiotic) : 3/27/2013 2:04:44 PM (GMT-6)

Posted 3/27/2013 8:25 PM (GMT 0)
Probiotic,

I had my surgeries in Philadelphia and I had never tried one of those famous Gino's cheese steak sandwiches. All week in the hospital all I heard my hubby talking about was how good they were as he made a pit stop there on the way to see me just about everyday for lunch. The first stop I made my husband make after I was discharged from the hospital was to Gino's. I could have never eaten that prior to surgery....I would have keeled over in pain! It was so nice to be able to enjoy something like that again. I only ate half....I was good! I try to eat healthy but it's so nice not to have to think about being bad once in a while. :)
Posted 3/27/2013 9:46 PM (GMT 0)
I'm very careful when it comes to dried fruits and seeds. I only have very little of them otherwise I get blockages....when that does happen I just clear them myself instead of going to the hospital-no big deal. Veggies I generally will only eat cooked. But no real restrictions beyond that. I generally eat pretty healthy-only whole foods, nothing processed. But that doesn't have anything to do with my ostomy, it's just what I like to eat. And I do have my moments of eating whatever junkfood I please =D My day to day diet is pretty much 660 grams of baked chicken or turkey, and 6-8 pieces of various fruits.

Oh and no alcohol restrictions over here whatsoever. Go ahead and get hammered, it's all good!

Matt
Posted 3/27/2013 10:28 PM (GMT 0)
Probro, obviously everyone is different but I was SO pleased to discover that without my colon I am no longer lactose intolerant. So my diet is even better now than it was when I had my colon and didn't have UC! (to be fair, my current GI thinks I had undiagnosed UC with self limiting flares for several years before I was dx, which may be true. anyway, the fact remains, I can eat ice cream all day with no ill effects, and that's amazing)
Posted 3/28/2013 4:18 AM (GMT 0)
ByeByeUC,

I'm a medical student in Philly. If you don't mind my asking, where was your procedure?

I am only 3.5 weeks out from surgery, but I just couldn't wait to start eating everything. I am still avoiding beans and popcorn, but other than that I introduced something new every day (lettuce, spinach, whole wheat bread) and drank a lot of water and chewed a lot and hoped for no blockage. Knock on wood, good so far!
Posted 3/28/2013 12:20 PM (GMT 0)
I eat anything and everything (and it shows!). I was never given a diet to follow, except for the bland foods for 6 weeks until I healed. After that, I was given free reign. I love my food and have never had any problems tolerating any of it, including, nuts, popcorn, skins, mushrooms, etc.

Once you're healed, add new foods one at a time and in small quantities. That way, if a food does give you problems, you can either a) eliminate it from your diet forever (not my choice) or b) try it again in a few months and see (quite often what you can't tolerate at first is perfectly fine a few weeks later).

Everyone is different as to what they can and can't tolerate. Don't be scared to try new foods and NEVER EVER listen to people when they say explicitly 'don't eat xxxx' because, more often than not, you will be perfectly fine with it. Just because one person can't eat it doesn't mean you can't either and it's so sad to see people not eating a certain food that they love simply because one person said it caused problems for them.
Posted 3/31/2013 1:49 AM (GMT 0)
I found that I can eat pretty much anything, but if it's really hot out I have to be careful about eating too many high fiber foods -- it's hard to stay hydrated, and that's when I've had blockages..... so now I pay attention, and if I have something like Chinese vegetables when it's hot out, I drink some grape juice to thin things out, and also drink something w/electrolytes in it, not plain water.... it was hard to figure out, because things I was fine with in the winter suddenly caused blockages in the summer.

I eat cooked mushrooms, no problem.... and a little bit of popcorn. Shy about too much raw apple or pear, so I usually cook them.

But before surgery I was avoiding wheat, dairy, beans, raw fruit, raw veggies, soy, and just a whole lot of things.... and still getting worse.... it's an amazing difference now.
Posted 4/1/2013 10:55 AM (GMT 0)
Sometimes it helps to listen to your body. It's been year since takedown and only in the last months has it said, ok, onions are ok.AndI'm eating more fruit than I did when I had UC.
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