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Ileostomy and food

Posted by stace20, on Wed Sep 25, 2013 6:42 am
Hello does anyone know what food to stay away from or what is good. I only had this done so I am all new to this.
Reply by Mrs.A, on Wed Sep 25, 2013 7:21 pm
Hello stace, I don't have an ileo, but I looked at an older thread and here is the link about a food list:

http://www.meetanostomate.org/phpBB2/viewtopic.php?t=4923 I think as you go through some of the past post you will find more information and some in greater detail.

You could get a list from your doctor's office or stoma nurse if you have one.  I have had my ostomy for some time now and manage to eat most things without not much difficulty. Of course the key is to chew, chew chew. It is also best to avoid some foods especially in the beginning stages like raw nuts and other things. You also have to watch if you take over the counter vitamins as sometimes folks have said they come out the same as they went in, so they did not absorb any nutrition from them. There is much to learn about our new way of life but keep searching the site and other places and you will learn from others as most of us have.
I think a food journal is a great way to keep track of what you have eaten in case something doesn't agree with you. Introduce one new food slowly in small amounts until you see how it effects you. You are still healing and it takes sometime for your body to get back to normal. Everyone is different so you have to experiment to see what is best for you.
You can google ostomy and get many results some of the most known are the U.O.A.A. (United Ostomy Assoc. of America)

Here also is a list from a google search
http://www.ostomy.org/ostomy_info/pubs/food_ref_card.pdf

Hope this is the beginning of all the information others will surely give.
Past Member
Reply by Past Member, on Wed Sep 25, 2013 7:46 pm
nuts, popcorn, pineapple, avocados, any heavy insoluble fibre. brans that sort of thing.
as there are two types of fibre soluble and insoluble.
I lived on fish chicken, pasta, mince meat most fruit with out the skin white bread mostly normal foods but without skins and anything that the body cannot digest some nuts pips skins (like pepper skins tomato, peach).

Also avoid chewing gum as it makes you windy and anything that is specific to you that makes you windy    (mines peanut butter).
avoid fizzy drinks energy drinks anything that will make you more acidic and is generally bad for you.
And in the early days avoid KFC for some reason it has certain properties that bind you up inside although I never had that problem. (I love it)

Small regular meals are recommended followed by a glass of water.

I was very sick when I had mine done and eating was a real hassle and very problematic.
The first few weeks of my meals were mashed potato spaghetti fish fingers eggs on toast and to be fair not much else.
Within a few months I was eating like normal again and the worry went away.

At the START of having a Ileostomy the rule I followed was if you cant cut the food with the side of your fork you probably shouldn't eat it.
Reply by mamawlaura, on Wed Sep 25, 2013 8:30 pm
Hi Stace..a real good discussion going here on foods that we can eat without problems with our ileos..I've had mine 2 yrs..was real careful in beginning with foods that had skins on them and nuts and seeds..still can't eat bran products..One thing I have learned is the timimg of your meals is real important..Creamed foods,gravy,milk,ice cream ect. for dinner or bed time snacks causes lots of gas and occ.failure of bag during night! that's NO fun..good luck to u ..there is lot of trial & error but you'll get the hang of it
Reply by Steve7809, on Thu Sep 26, 2013 4:14 am
Hello Stace . Eat what you like... in moderation! Chew it well, and over time you will find what does and does'nt work for you! fiberous foods (celery, etc), nuts, seeds and grains don't digest well but I still eat them occasionaly and in moderation because I like them.
                                                                                                Steve.
Reply by stace20, on Thu Sep 26, 2013 6:34 am
Thank you everyone x
Reply by MissMeganM, on Thu Sep 26, 2013 8:58 am
Steve's right, chow down Stace!!!  I do not eat popcorn, corn, mushrooms, nuts or raw celery - but those are the only things I don't eat.  I was eating lobster rolls when I was still in the hospital!  If you are questioning a food, eat a little bit of it and see how it comes out.  Then the next time, eat a little more of it.  Granted, this is not the best way to find out but is the only way to find out, lol

For example, yesterday morning I had a bagel with cream cheese for breakfast, a graham cracker spread with peanut butter for a snack, a turkey salad sandwich and chicken noodle soup for lunch, and chicken pot pie for supper (which had carrots, green beans, onions and potatoes in it).  I chew the hell out of all my food and drink huge amounts of sports drinks and water.  LostRealist is right in avoiding KFC (once you see it come out of an ileostomy I can guarantee you that you will never eat it again) as well as soda because it will probably give you gas - and the caffeine is dehydrating anyway.  If I do have a soda, it's one of those tiny little bottles or cans they make nowadays.  You will notice most fried and fast food will give you gas now - I still have it every once in awhile (mmmm, LOVE me some Chinese takeout) but as a rule I don't eat it much.  I personally do not eat anything containing a large amount of vinegar (like store bought sauces, Italian dressing, etc) because something about vinegar ramps up my acidity so much that when I eat it, it immediately causes barrier melt-out and I have a leak within a couple hours.

I know a lot of people do not eat any veggies raw nor do they eat skins; I eat raw onions, peppers, tomatoes, cucumbers, and butter lettuce (Boston Bibb) and have never had a problem.  I peel my apples, but eat berries as they are and it has been fine, in addition to every other fruit out there (peeled) except for oranges.  I eat steak, pizza, shellfish, pretty much whatever can't run away from me fast enough since for 10 years I didn't eat hardly anything because of the pain.  Of course, you need to be gentle with yourself in the weeks following surgery, but after that - eat, girl!  
Reply by ZaliBee, on Thu Sep 26, 2013 8:24 pm
First month I went easy on what I ate and followed the recommended No-No list, but as the months passed, I started eating everything that stirred my fancy.

Introduce new foods slowly to make sure it doesn't kill you of course and things with little seeds (like raspberries) are hell on your seal.

KFC is evil, I will agree

It's been almost 3 years and this summer I got brave and ate popcorn.  I chased it with loads of water and was able to eat about half of a small bowl.  It was Nirvana, I really missed popcorn.

Cucumber skin, Apple skin, mushrooms and steak are serious no no's for me.  

Just listen to you Ileo and he/she will tell you what to do... Promise!


Last edited by ZaliBee on Fri Sep 27, 2013 9:58 am; edited 1 time in total
Reply by stace20, on Fri Sep 27, 2013 5:29 am
Thanks everyone for your help
Reply by stace20, on Sat Sep 28, 2013 6:42 pm
Does anyone know if I can eat Chinese ?
Reply by Steve7809, on Sat Sep 28, 2013 6:49 pm
I love Chinese food! I also eat Mongolian Bar-b-q about twice a month!
Reply by Ewesful, on Mon Sep 30, 2013 9:04 pm
The responses are really fascinating -- I had an ileostomy and Whipple so had several issues to cope with at once.  The Dr. insists that I take a glass of an acidic drink(orange, tomato, V-8, etc) with my vitamins and it has worked beautifully.

I love homemade pickles and eat them on occasion, but relish, onions, etc. do not digest.  Popcorn now digests fine but I do not use anything other than air popped --I use a little  real butter and salt --

Lobster really is excellent and was offered to me early on by a long time ileostomy friend. I cannot tolerate any dairywhip type, margerine, etc.  but I can use some real whipped cream and real buttter is fine.  To keep weight on I use whole and 2% milk - lots of mashed potatoes and (white and sweet). I am always looking for ideas.  Sometimes it is quite a challenge to find good foods without chemicals.  I find eggs to be excellent and I was strongly advised to eat meat each day.   Good luck!!
Reply by ZaliBee, on Mon Sep 30, 2013 10:14 pm
Ewesful
My doctors are talking about a whipple and I have been concerned about it.  How long was your recovery time?   Did you have complications?
Reply by Ewesful, on Mon Sep 30, 2013 10:50 pm
Actually I was amazed at the outcome as they duid both the total removal of the colon, 1/2 the stomach, 1/2 the pancreas, gallbladder, and all the massive tumors wrapped and around all the remaining organs, plus removing the top 12" of the small intestine -- that is the tricky part as it governs the digestion and messages to the brain --

I was in ICU 2 days and other than being reactive to all the pain meds they had, I did well.  I have FAP which was discovered in Jan.  IF you have any sign of pancreatic cancer think twice and get some really serious with the surgeon for all the right tests.  Surgery causes pancreatic cancer to spread fast.   I am feeling fine now but I have a hard time eating  all that I'd like as the FAP ate my jaw years ago -- I had implants but the jaw is now the thickness of paper and I have undergone bone implants 2x but it is the only hope at the moment to get use of it.  

What is your diagnosis?  There is a tissue type wrap they can use before closing you to prevent adhesions -- I went to Dartmouth (NH) and had a fabulous team - I cannot say enough positives -- they were up on every current thing - surgery was 11 hours - I am still dealing with issues from the anesthesia but that is getting much better.

I was up and walking and trying to do things in 3 days -- but everything depends on what they are doing and what is needed-- I had to have around the clock people for 5 weeks to cook and take care of the house - friends were here for me and a close family -- you should do well IF the surgeon is on top of things-- I wish you the best -- if it is "only a Whipple" some are done in 5 hrs or so --  but the recovery is expected to be long and hard -- that is why I was some surprised to be up and going so fast....  I wish you the very best and would love to chat with and support you throughout.  

Because I had BOTH surgeries at the same time, my case is being written up -- also it is about a year before you are at your "new normal" -- however, 6 months =85% .... There is a "new normal" but for me  the worst of it is the ileostomy bag -- the stomach healed and the pancreas healed -- the cancer seen there was miraculously non-cancer in the end-- that is a fascinating topic as well:)  

If the Whipple will FIX the problem then go for it for sure --  my friend had one for something, but she had a long, long recovery.  Now, however, she is traveling all over, back to work, and doing fine.
Reply by ZaliBee, on Tue Oct 01, 2013 7:59 pm
I have FAP as well
It hit me about 35 but they misdiagnosed it until I was about 47.  How did it attack your jaw?  I have those cysty bumps in the soft tissue under my jaw but I never thought anything about it, also have them in my scalp.  

I had my colon, anus and rectum removed 2  yrs ago but my duodenum is giving me the blues.  They are going in, every 4-6 months in an attempt to stay ahead of the polyps but i would much rather they just remove it and get it over with before they perforate something again.  

Thanks SO much for telling me how your whipple went though.  I'm hoping they don't have to take that much of the stomach, small intestine or the gallbladder.  Right now it's just affecting the Duo and they say the stomach lining looks irritated.
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