Food Tips for New Ileostomy Patients

With FAP, the entire digestive system is involved, and sometimes there are other syndromes attached. I lost all my lower teeth - they literally fell out, and not from lack of care. And I had pins to hold a plate, but that did not last more than a year of good use. Then the pins came out a while 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. The 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 knew about it then. I am 68, and Dad died at 56 - the longest living with "it" at that time. Gram died in her late 70s, but they had removed all the offending organs earlier. We go back 5 known generations, and one niece has it - she is in her 40s and about where you are with it.

No one 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 consult with someone who is 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 manage 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 internal wrap to prevent adhesions. You can do whatever works. I did not have any choice as I was loaded with 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 months, 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 doctor, 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.

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!!

The part that scares me about leaving the polyps is that they are not the regular kind -- FAP polyps 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 with 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 doctor says annually but I go every 2 years 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 years.

There was a story from a military person in Hawaii that discovered he had FAP - I cannot find the comments but would 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 post-op 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-year-old granddaughter 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!

Excellent information. Thank you for sharing it. My 24-year-old daughter was diagnosed with FAP at the age of 16 when her colon was removed after thousands 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.

I did a lot of research before my surgery and there are some really top-notch 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 parameters- like not lifting more than 5 lbs for a while - now 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 Gardner's 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 the early 1800s -- 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 -

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.

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 you 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 from the affected site. You need someone with you to keep you positive-- let the Lord take it --

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 Ileostomy 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.

If you look on Facebook, there are some good FAP groups.

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!

Quilting... one of my girlfriends has threatened to teach me how to quilt and knit this winter.

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 horrific hallucinations -- 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 for a long time as I was under for so long and it is just now really noticeably better --- apparently 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 straightforward situation. I only lost less than 1/2 pint of blood - this surgeon is unbelievable! 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.

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.

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.

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.

Only thing that ever blocked me solid was fresh coconut.

Won it at a fair, drank several pints to celebrate, ate half the coconut and ended up the following morning at the doctor's surgery in some discomfort.

The unblocking was not pleasant either.

Have never tried it since, but generally you can eat what you want.

Over 40 years I have eaten most foods in many parts of the world.

Enjoy your life.

I've had ileo for 40 years. Always had problems with leakage with fruits and veggies so I juice and I can enjoy everything (I still need to add lots of water)

Hi Stace...I have an ileostomy, hun....food is going to be trial and error....it differs for each of us...we have our dos and don'ts and maybes for the first 3 months, be careful. ..First, chew, chew, chew, and chew some more. Eat smaller portions but eat more times per day...stay away from fruits and vegetables with skin or seeds and nuts, at least for a few months, and gradually try... I eat, or at least try, what I want....again, remember what you have to pass through the stoma and it can get blocked easily if food is not chewed or broken down, etc....take a little from each of us and you certainly will not go hungry....welcome to the group

I have had an ileostomy since 2007 and I have found that I can eat anything I want. However, I have to eat some things in small amounts, like soft nuts for example. I also found that chewing slowly and completely helps this to be possible. I also suggest drinking lots of fluids. There really isn't much I can't eat. If I do feel like things aren't moving as they should, I drink apple juice and it helps make it feel like it should. Hope this helps.