Seeking Advice for Expanding Food Options with Dietary Restrictions

Just going through a mourning stage for food. I have an ileostomy so no nuts (my favorite snack!) or seeds or much roughage...my favorite foods right there. Also, I am on chemo so no sushi, raw fruit or veg, lunch meats. Also, chemo gives me neuropathy so I can't have cold things...bye bye ice cream, yogurt, cereal....Then without chemo, just an ostomy, I must avoid greens (like collard, cabbage etc) as it gets stuck. And broccoli is a no-no because it causes the worst gas...even just a single bite and I end up with a balloon bag. Beef doesn't agree with me and same for pork. Beans I can have in moderation, like a spoonful...when before I had beans probably daily. Anything fatty or greasy gives me diarrhea and awful cramping. Before cancer and ostomy, I lived off of salads, greens, nuts, and a near vegan diet but I did enjoy steak. Now it seems I'm living off chicken, pasta, chips, potatoes, green beans (they agree with me), bread. I'm so sick of those foods. Does an ileostomy eventually allow more foods?

Does an ileostomy eventually allow more foods? I think yes, or at least it did with me. It takes some time for your body and digestive system to get used to being drastically changed. I had trouble with most of the foods you describe. Introduce them a little at a time, chewing well, and drinking water when eating. These days, I can eat pretty much anything, as long as I chew well. I can't stress this enough. Anything is hard to digest with an ileostomy, so the smaller the pieces, the easier they will digest. I must have had over twenty blockages in the first couple of years with my ileostomy. They can be very painful. I also like to eat nuts, but overdoing it causes a blockage. I found the best way to eat nuts is to crush, grind, or blend them up into a powder-like consistency. That way, there are no small pieces to cause a blockage. Nuts do not digest with an ileostomy.

Helo Gemd. I like the reply by Two bags so just to add my own take on this; some of the foods you describe do not digest very well whether people have a stoma or not. Things like seeds, peanuts and sweetcorn are noted for coming out just as they went in. It fascinates me to find that dates are the same, whereas prunes will digest. where's the logic in that? Chew, chew, chew and chew again seems to be the easiest answer, or as Two bags says, crush, grind or blend, which for me tends to take away some of the pleasure of eating the variety of food available. Seeing it all on a plate in its natural form and chewing it individually somehow adds to the enjoyment of eating. Otherwise we might as well just swallow what we need in the form of vitamin pills, powders etc.  For me, the act of eating is part of an enjoyment and fulfillment in life, which is more than just eating to stay alive. So, I will continue to eat stuff that goes straight through and does me virtually no good whatsoever in terms of nutrition. However, it does seem to be good for the 'soul'.

There are a few other things I do that may not be good for me, but I do them anyway, However, I won't go into my other vices here!

Best wishes

Bill   

Your body's been and still going through a lot when you finish chemo and start to heal. Try every food you like again.

I have had an ileostomy for 3.5 years and have never had a blockage. I miss the same foods you do, but I adapted because I had to to have a good life. I eat smooth peanut butter out of the jar, almond butter too. Iceberg lettuce is the only roughage I can eat. No more beans, corn, or peas. I take more vitamins than I ever took before to make some difference in the lack of nutrients I used to get from food. Your life has changed, mourn for the old and move on. I cannot do all the things I did before but I'm alive and healthy and glad to be here. After 5 years of colitis, I enjoy life again!

Words of Encouragement from Ostomy Advocates I Hollister

I am luckily able to have a few beans....although before they were a staple of my diet and now it's at most two spoonfuls of beans and chew forever. And yes, iceberg is the only lettuce I can have, when I'm able to have raw veggies. I just can't wait till my body adjusts a little better especially after chemo. I know many love to eat things like donuts, chicken nuggets, mac n cheese, toast, pasta, potatoes.... it's probably the stereotypical American diet...but if I magically could, I would eat 90% of my diet full of beans, brown rice, salad, cabbage, broccoli, cashews and pecans, seeds, chickpeas, greens....oh well.

Gemd,

You will eventually be able to eat the foods you love again, you just have to take your time. As Panther said, your body has been through a lot and is still healing. I've had an ileostomy for almost 24 years now and had to learn the hard way which foods I could eat right after surgery.

I love pinto beans as it was a staple when I was growing up. Pinto beans with fried potatoes, cornbread, and slaw. I found that when eating beans, you can either take a GasX or the equivalent, and/or use a few drops of Beano when making the beans. But you still have to chew the beans or any food into a paste-like consistency. When it comes out of your stoma, it will be super thick.

With nuts, try mixing them with a food that's easy to digest. I mix nuts with Chex mix as the cereal part is easy to digest. Again, chew them up very well.

And as Two Bags said, you don't want any chunks of food bigger than the opening of your stoma, which is probably about the same size as an earphone jack. Just test the foods you love in moderation with foods you know you can digest without problems. Let us know how it goes.

Bain

Gem, be kind to yourself. You've been through so much, and although there is more to come, the worst is over. You're here and you're healthy enough to be complaining. Good on you. During my last bout with chemo, I had the same sensitivity to cold: had to wear gloves to open the icebox, gloves, hat, mask, and/or scarf if I needed the freezer. Had to drink everything at room temperature. Diet Coke at room temp...a travesty. As getting even a paper cut was a three-alarm emergency, I had to get what I call 'chain mail' gloves to do any cutting when I cooked---foods that I had to let cool to an unappealing temperature before I could eat them. This past summer, I had a huge sensitivity to the sun. I'm already fair-skinned and sunburn-prone, but this past summer was the worst. I still have scars. This summer it's hats and long sleeves...how fetching. Anyway, bear this out and try not to be impatient...this last bit of chemo may be your last...then you can find out what you can eat...chemo screws up everything. When I finished, some foods didn't even taste the same, and my body reacted differently than it does now. So be patient and eat to live, you can live it up with food in a few months (or years, we're all different). Keep writing, I think everyone's amazed by your progress.

I have an ileostomy, and I got it 10 months ago, and I can eat anything. I eat popcorn, walnuts, anything that I ate before. I can eat now, I don't have to worry about anything. I can eat all kinds of salad greens.

I have an ileostomy, I got it 10 months ago, and I can eat anything. I eat popcorn, walnuts, anything that I ate before. I can eat now, I don't have to worry about anything. I eat all kinds of salad greens, sweet corn.

I guess I must consider myself pretty lucky, I have never had a blockage and I hope now that I don't jinx myself, I've only had my ileostomy for 10 months, but my surgeon told me that I could eat anything and I do. I eat nuts, oh, sweet corn, beans, anything that I ate before I still do. I can't understand why some people have blockages and some don't.

I guess I must consider myself pretty lucky, I have never had a blockage and I hope now that I don't jinx myself, I've only had my ileostomy for 10 months, but my surgeon told me that I could eat anything and I do. I eat nuts, oh, sweet corn, beans, anything that I ate before I still do. I can't understand why some people have blockages and some don't. I just hope now that I didn't jinx myself.

Gem, time is your friend. For a year after my ileostomy (in Aug., 2016), I was afraid to eat anything with seeds, a peeling, roughage of any sort. When I went in for my one-year checkup, my surgeon said that I was free to eat anything I wanted, as long as I chewed well. I was so afraid of getting a blockage, but I slowly branched out and have never had a problem. Yes, broccoli, cabbage, beans, and fried foods make my bag expand, but I choose convenient times to eat those things. Don't get discouraged. Follow your doctor's advice and know that it does get better!! Good luck!!

Lulu

Hi Gemd, I have had an ileostomy for 5 years now... Only foods I was told to avoid at all costs were fresh pineapple and corn nuts. My body took a few months to settle in, but I pretty much eat anything I want except for the three mentioned. I have found that red wine fills my bag really fast :-) Eggs produce a liquid-ish output. I have a salad and 80 grams of chili-flavored tuna each work day for lunch, and that gives me a semi-liquid output - but who cares, eh! Food tastes nice. I have curries, pickles, etc., etc...

You don't say how new you are to this, but it will settle. Try foods one at a time and see what happens, but there is a settling-in period. Good luck and enjoy food. A full bag just means an empty required! Not a biggie.

Cheers

Hi, I can relate. I have MS and have lesions on my spinal cord which make it impossible for me to open my rectum. Unfortunately, I had a surgeon that thought she could reverse an ileostomy without checking with my neurologist. Let's just say I was in a coma for about 3 weeks.

Anyway, when I could, I never wanted to eat salads and veggies. Now, I crave them. I have a diet of strictly bread, chicken or beef, pasta or rice, some cereals, and some potatoes. Not much. Cause of the emergency ileostomy (almost died on the table = very septic), I have about a foot of small intestine. Went through a year of waking up covered in crap. Dwindled things down to the main food groups. Usually, you have fewer choices with an ileostomy, it depends on how much intestine is in there. Have a CT to check. What I do now is have a binge night. I will go to a restaurant and order whatever. I get prepared before bed. Have flange etc. in the bathroom, tub is clean and opened up, and I put a green garbage bag on the bottom sheet and cover with a large towel. Usually have a leak but don't have to start stripping the bed at 3 a.m., you know? If you don't give yourself a little pleasure, you will get really frustrated. I do that about once every 2 1/2 weeks. Keeps me sane and not tripping out about having an ileostomy. With a colostomy, you should be able to eat more, but nuts are really a no-no. More bowel to hold waste. Check in the future about reversing ileostomy, once chemo and all that is done. About a year and a half. Make sure you get a good colorectal surgeon, and you should be able to go back to normal. If not, just try to stay positive and treat yourself every once in a while. Good luck, Judy

Hi Gemd,

Just to be realistic, I've had my ileostomy for 20 months and I cannot eat normally. My diet was like yours - pre-cancer SAD diet, beef, non-organic food, and fast food. I started eating healthy a few years before diagnosis, juicing green drinks, and eating better. On 01/15/2015, I was diagnosed with stage 3C colon cancer. I went hardcore fruitarian for 4 months, then full vegan for 2.5 years. Then, I had the ileostomy on 05/10/2017 and have had about 50 blockages, mainly due to my stubbornness, eating too much, and pushing the limits. It takes me about 12 hours to block up, so at times I'd think I'm okay, only to suffer a day later. I had surgery using the DaVinci robot, so I had a quick recovery and hardly any scarring. But I must have scar tissue or a complex curve in my intestines that food dams up by. My surgeon has been waiting for my anastomotic defect to heal from all the radiation damage, but it's not looking good. I asked about going from ileo to colostomy since people with colostomies don't seem to suffer from blockages. I am getting better, but I would love to eat a giant salad with arugula and all the works! Take care, don't fret, we'll be okay!

How did you do that??

How did I do what? Change my diet??

This is not realistic, we have blockages.

You're the only one in the USA. Be happy.

I have ileostomy. I eat nuts and salads. My diet never changes. I just don't eat popcorn. I haven't since I was 14 when I had my first cancer surgery.