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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.
Reply by Ewesful, on Tue Oct 01, 2013 11:15 pm
With FAP the entire digestive system is involved and sometimes there are other syndromes attached... I lost all my lower teeth - literally feel out and not from lack of care -- and I had pins to hold a plate and that did not last more than a year of good use --- then the pins came out awhile back and after a bone graft we are hoping it will hold two mini pins - new tech stuff so I can have a few teeth---- top teeth are not involved- only the mandible.  Look up Gardner's Syndrome-- I also had a tumor when I was 20 and I have the keystone spot in my eye that assures you of FAP.....however no one new about it then....I am 68 and Dad died at 56 - longest living with "it" at that time -- Gram died in her late 70's but they had removed all the offending organs earlier -- we go back 5 known generations and one niece has it - she is in her 40's and about where you are with it......

No none who studies it can believe my situation -- that is why it is so unusual and we are really hoping to make some breakthroughs ....
You should know by then to watch carefully for thyroid cancer - it is fast and aggressive  -

The Whipple is not an 11 hour surgery to just remove the top of the small intestine - but please connect who really on the cutting edge --- I don't know if that could be done some other way but for sure it is not easy to deal with the feeding tubes etc. but if it gives you quality of life - I don't consider quantity important - just real positive quality then by all means go forward --- I think you can lick the FAP enough (never gone as it is DNA) such that as my doctor said, he does not think "it will be the thing that takes me out" -- but one never knows -- be sure you have all the views - camera etc.... done and when you decide one way or the other give it all you have -- be confident and positive and it will make all the difference in the world...   I am 2 days short of 6 months from the dual surgery and have recently been subbing at the school, taking care of grandkids after school, keeping up with some of the farmwork (not like before) and maintaining the property by myself -- I was really frustrated the other day because I wasn't at "my old speed" - but realized just how much I was doing and just said "be thankful"!!!  

Also ask about the interal wrap to prevent adhesions -- you can do whatever works -- I did not have any choice as I was loaded with the tumors and they were hot for cancer -- I really do not know how I dodged the bullet over these past 28 years--- but I gave it my best and I am very thankful each and every day..... I think the duodenum is the critical mass that triggers all the mess in the pancreas, etc --- if you can get ahead of it do so -- also the stomach mass will occur if it has not already --- so if it has, get it all done at once -- the stomach will in less than 6 mos heal and stretch to a good size again  -- the ileostomy pouch is what it is, and you will really have to adjust your diet to match what digestion has been removed and it improves weekly - every Sunday I could see marked improvements - sometimes it was how far I could walk - other weeks how much better I was eating, how much I could do between naps, how well my concentration improved.  I jotted little notes on the calendar to monitor my "mini - milestones". I could write a book -- so let me know what and how I can help ----

Keep me in your loop and if you want to talk to an amazing Dr -- I can send his name to you.  I wish you all the best and I am already praying for you, the decisions that need to be made and your outcomes ---
Reply by ZaliBee, on Thu Oct 03, 2013 9:57 pm
I'm glad we met on here. You are the first person I've been able to talk to who has FAP.  1/2 of thyroid is gone and 16 months later there's nothing else showing so I think I should be good there for awhile.  I already sent a message to my doc about the growths inside the soft tissue of my chin (laughs) I got scolded for not mentioning it sooner.  

I'm going to go ahead and push for them to deal with the Duodenum now instead of this 'wait and see' attitude they have.  There's no way they can biopsy all of those polyps each time they do an endoscopy and I'm convinced that they are going to miss the one that's turned cancerous and cause more problems than if they just remove it now before it gets fully involved.

Hearing that you are already up and moving around is giving me that little push I needed to  seriously push at them about this.

Thanks so much Ewesful!!
Reply by Ewesful, on Thu Oct 03, 2013 10:30 pm
The part that scares me about leaving the polyps is that they are not the regular kind -- FAP polypd can turn or grow incredibly fast - sometimes in 3 months they can go from microscopic or very small to massive.  The tumors can strangle an organ -- the part you are dealing is going to go anyway and you surely should not have to have a really long surgery - I do recommend they do the stomach if there are any issues -- they will move to the pancreas otherwise and every time you are opened up, the chances of the adhesions and other tumors is great.  I too am so pleased to have a FAP victim to chat with -- we are victims but ever so fortunate that we have so much knowledge going for us -- watch the jaw and good luck -- keep your eyesight tested as needed - my DR says annually but I go every 2 yrs unless I feel something is off base.  
If there is a safe way to pass our addresses, I can call and be there for you and your family as you go through the process....  My family has 5  generations involved with the advent of my niece's case - Of my children, one daughter does not have the gene and the other does not know yet.  All the other generations have passed on but the details all remain even though there was no name for it in those days -- I think the name and details are very recent about 6-8 yrs.

There was a story from a military person in Hawaii that ddicovered he had FAP - I cannot find the comments but tould love to know how he is/has done -- we can all learn ever so much from each other.  I have not found a real FAP group - there are ileostomy groups of course but that is only a piece of our issues in life.  

I will keep you in my prayers and look forward to hearing from you.  Stay positive - I really believe you can hold it at bay and win.  I am changed by it, but I do not let it rule my life or happiness....  I am hoping to get back to real farming in another 6 months -- today I celebrated 6 months postop and feel almost "perfectly" healed - minus what they took out - but fully back to "normal" just slower - I cannot push my energy like I could before but I have learned to have high and low energy events back to back and never just sit - keep going - knitting, quilting, stained glass, puzzles, good books -- teaching my 5 yr old grand daughter to spin yarn from the sheep - she has dyed 17 skeins of wool and she is trying to spin some of the roving -- I am knitting her some socks per her request!
Reply by three, on Fri Oct 04, 2013 1:13 am
Excellent information Ewesful — thanks for sharing it. My 24 year old daughter was diagnosed with FAP at the age of 16 when her colon was removed after 1000's of polyps were discovered. Since then she's had a desmoid and a dermoid tumor removed and currently the doctors are monitoring the size of another desmoid which seems to be static.
Reply by Ewesful, on Fri Oct 04, 2013 10:54 am
I did a lot of research before my surgery and there are some really topnotch research areas - one team is at Dartmouth Hitchcock - and I found some amazing details in San Francisco - I can look the stuff up - but anyway she really needs to get the best she can because it is so critical to outcome - the body internal wrap has been amazing - and the other thing is getting all of the mess done at once so the body can bounce back in one careful healing-- The Whipple has some extremely important paramenters- like not lifting more more than 5 lbs for awhile - mow I am up to 47 lift -- still not my old self throwing 50 lb bales and I will not be, but that is okay!  Running and jogging are out for a year or so -- but walking is great and I was doing it in 3 days and can do miles now.....

I don't know what the rules are at other hospitals - but here once you are defined as FAP - be sure they check for Gardners Syndrome as well - there are 8 tests that are immediate - including the thyroid scans -- but this is not done everywhere and therein lies the issue of an overall healthy outcome.  My niece is struggling as the upper regions are now rapidly getting beyond "control".  From talking with her,  it seems that the colon issues tend to show first.  Thus they medically  deal accordingly, but then the rest of the system starts to show signs -- and once they do even 3 months can reveal huge changes.  Also some tumors are considered non cancer causing, but that is very questionable data.  It is so scary especially at that age. For me the tumors were entangled everywhere and what a mess - and the worst and most significant issue is to get them before they invade the pancreas which mine had -- then it is a matter of time to develop into pancreatic cancer - a result not to wish on your worst enemy.

I so hope the end can be found for this genetic flaw -- I often wonder if those of us carrying it will be able to trace back to a known source --- do we have a commonality - what caused the genetic flaw... I would never have had children had I known I carried it but  knowing that one portion cannot carry it now helps and I have one other grandchild and his mother that have to be tested.  My niece would never have had kids if she had known - but the info was not available then either.  My sister and her children have it - my brother died from other causes in his 40's and my dad, his mother and her mother and even her mother all had it so I can fully trace it into early 1800's -- for the longest time it was believed this form of colon cancer was only carried by the female side and Dad's case threw water on that -- back in the late 50's at a huge study in UVA -- and he carried on a "long time" as a tester for the medical research at Dartmouth until it was too much... and he left us at 56

I guess I am chatty today - need to get some work done and pick up the kids from school -
Reply by ZaliBee, on Sat Oct 05, 2013 7:22 pm
I haven't been checked for Gardeners, but I sent in a request for it to be taken care of asap.  Thank you for the suggestion.

I agree with you, if I had known, I would have NEVER had children.  My grandson is showing symptoms now that he's reached puberty and I feel so horribly guilty.  

My care is done through the Veteran's Hospital System here in the U.S but they have been diligent  so I am satisfied so far.   I was just terrified of the Whipple but you have made me feel a little better about it.

Thanks so very much.
Reply by Ewesful, on Sat Oct 05, 2013 8:33 pm
The VA here in VT is excellent and ties into DHMC -- I wish you well - if you can really discuss the surgery with your surgeon I think you will feel better about it -- he should be able to do the pancreas without making you diabetic and he should be able to assure of that - you will need to lose the gallbladder and I don't know what the surgeon will think concerning the stomach, however the top of the small intestine is critical that he gets all of it that is involved and has good margins  - that refers to making sure there cannot be any cancerous cells remaining by taking enough and far enough as necessary form the affected site.  You need someone with you to keep you positive-- let the Lord take it --
Reply by ZaliBee, on Sun Oct 06, 2013 8:55 am
I wish there was a way to share our contact information as well but I don't know how, short of posting my skype name here (laughs)  You are right though, there needs to be a FAP group somewhere since we have such unique problems with our condition.   The Ileostomomy groups help but then beyond that, you are on your own.  This whole thing has given me that push to do things I had been putting off until "later" .  I have been mooning over these walipini greenhouse plans I found and I am pretty certain it will work in southern Missouri.   Strawberries in January.... yumm!

Anyway, speaking to you has done wonders and I hope you get your energy back soon and can start farming again.  You are a wonder.  Wow, you beat all sorts of odds by getting diagnosed so late. I keep marveling on that. A miracle really.
Reply by panther, on Sun Oct 06, 2013 11:31 am
If you look on fb there are some good FAP groups
Reply by Ewesful, on Sun Oct 06, 2013 12:34 pm
Keep me posted on your progress and what is planned -- In NH we are finally chilling down although the wood stove is going it is a lazy day for me and I will be sewing quilt squares for the Quilter's Guild - we make lovely quilts for members of the community with cancer and other long term issues -- another piece that keeps your mind active and positive!
Reply by ZaliBee, on Sun Oct 06, 2013 4:59 pm
Quilting... one of my girlfriends has threatened to teach me how to quilt and knit this winter.
Reply by Ewesful, on Sun Oct 06, 2013 8:06 pm
Oh my - take her upon it and you will fly through recovery!!  Planning the quilts and having a stack of pattern books next to me were so helpful. Sometimes all I did was put my hand on them and feel peaceful as I dozed  --the actual knitting came when my hands and arms got stronger -- I could not have morphine and all the "drugs" for pain sent me into horrofic halucinations -- finally on about the 5th day, I just said NO MORE  - I will manage -- and it was not all that bad --

I read a lot of short things but retention of material was poor a for a long time as I was under for so long and it is just now really noticeably better --- apparantly it affects parts of the brain different ways -- again I was under so long because of both surgeries and all those tumors -- It sounds like you are in a much more straight forward situation.  I only lost LESS than 1/2 pint of blood - this surgeon is unbelieveable!  If you could transfer to the WRJ Veterans Hosp (VT) you could work out something as this is all done at DHMC (NH)  My friend who has had the Whipple for other reasons had no problem with the anesthesia etc.. and was a lot less time under and her recovery was very different -  she is doing extremely well now and we were positive boosters for each other --and still are!  We had the same surgeon Smile
Reply by MissMeganM, on Mon Oct 07, 2013 8:39 am
YES, take her up on it!!!  I used youtube to teach myself how to knit while I was recovering and it is SO fun - very calming to the mind, occupies you so you can't obsess over things better not obsessed over.  Plus, you are creating something beautiful and useful in the meantime Smile
Reply by Ewesful, on Mon Oct 07, 2013 9:33 am
If you find knitting fun, also try crocheting - I am learning to tat and that is hard enough to keep your mind fully engaged --anything to keep your mind off you and to feel useful while you mend ---

Also be sure to follow all directions for rest and be careful about lifting stuff until all is safe - you don't need to unhinge anything.  That is why these very useful but safe activities are excellent.  Another friend does beautiful hand quilting and embroidery - but whatever set up several bags = each with a doable - not too huge - project so you can have fun getting ready - have fun picking and choosing while recovering - and fun seeing something come of all the time - and only deal with the hour you are in ---"hour by hour, inch by inch, life is a cinch" I think is the way the saying goes Smile
Reply by ZaliBee, on Mon Oct 07, 2013 9:34 am
Mine is a slow progression Ewesful.   The first year it was the colon, then the next year it was the thyroid, third year has been the Duodenum.   I've no idea if it will stop there for awhile or keep steadily forward.  Of course , I'm hoping for a good long pause.  

I want to learn to knit, it's something to do while chilling on the porch.  The quilting looks daunting though.
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