Colostomy Diet Help Needed

Hello,

I've just stumbled upon this group and I am ecstatic to have done so!

I am desperately looking for anyone who may have had the same type of colostomy procedure as I and even more so, what do you eat?!?

I'm sorry in advance - this will be a very long read -

One day I was struck with severe abdominal pain and cramping. I was later taken to the emergency room. It resulted in an emergency surgery due to a large non-operable tumor in my colon. A surgical procedure was performed - a loop colostomy with stoma placement and all the fun things that go with it.

It's been a very long year with a long host of OMG's!

You thought my hello ‍ was long -

Long story starts now

Due to a host of bizarre events - as I mentioned - OMG moments! I basically was put in a coma for a month, woke up, started chemo and was sent home due to an OMG event which resulted in the loss of my medical care. I still have a port in my chest a year later - ugh.

The really sad part in this all - I HAVE medical insurance!

Yep - OMG moments!

All I left the hospital knowing, was that almost everything I might eat - could or would kill me before the cancer could - ugh.

I was told "I could" eat:

Canned carrots with salt, chicken breast with salt, white medium rice with salt, 1 slice per day of crispy toasted white bread dry with no crust, dry Rice Krispies, 1/2 a banana every now and then, and that I need to drink tons of clear liquids. Oh, and to cut everything into tiny pieces and chew each bite 30 or more times until a pulp-like consistency occurs before swallowing - gag - omg!

I was told:

Sugar, butter, dairy, nuts, all seeds, raw vegetables, fresh fruits, red meat, pork, seafood, anything that has a skin or that forms a skin - are NOT my friends! Oysters and mushrooms are CERTAIN DEATH - OMG

I basically have eaten a 1/2 of a salted chicken breast, salted canned carrots, burnt toast and Gatorade Zero's every day for a year. There's been a day here and there that I couldn't bring myself to eat period - yuck.

I have gone from what was my normal weight of 140 pounds to a corpsed skeletal look of 85 pounds. Yep - OMG - The Shining - inserting another OMG here!

I did break out my heat gun (which felt like it now weighs 50 pounds) to stretch wrap and corpse a few cheap skeletons for Halloween this year - lol. I could have just laid myself out on the front lawn and saved a few bucks - lol.

I hope I haven't broken any rules within my very long-winded post. It did feel awesome to have actually put "some" of my OMG moments of the past year in print. Yes, there's more - lol.

I also hope my first post doesn't get me banned. I've not posted publicly about my medical issues before.

Thank you to anyone who actually makes it all the way to the end to read my question :

What can I eat that isn't a chicken, a carrot or a piece of burnt toast - that doesn't result in an instant death as per my hospital surgeon?!?

Thank you SO much!

Hi there,

You have a colostomy or ileostomy? May I ask why they said you could only eat as stated in your post?

I'm curious why they were so scary with what you can eat and not eat.

My diet is restricted but I can give you an idea what I can eat. I eat chicken, turkey almost daily, sometimes Gorton's fish fillets. I have eaten pork. Veggies- carrots, potatoes, sweet potato, green beans, and beets.

I can eat fruit cups like peaches and pears.

I can eat cheap white bread and plain crackers. I was told not to eat good grains. For cereal I eat rice crispies.

I'm told to go lightly on rice because it thickens your output, same with banana.

Mushrooms expand in your intestines so those are big no-nos. Most people will say marshmallow is okay because some eat a few to block their stoma so they can change their bag. It's actually not a good idea.

Herbal teas have been safe for me. I don't drink orange juice or anything with pulp.

If they're telling you that you can only eat certain things, there must be a medical reason. If they're telling you that you can only eat certain things because of your ostomy, they're full of BS. BTW, welcome and ask anything you want. If I haven't been banned yet, I highly doubt 99.9% of the people that actually post on here have any fear of getting banned.

Hello KDB.

Thanks for a great read. 

As for the food aspect, it seems to me that the medics are being overcautious and alarmist. Although, I suppose it does depend upon what is still amiss with your insides.
When I was told I couldn't eat much, I simply got those things that I really like and liquidised them before eating. This did make it seem as if I was eating soup or porridge every day, but the fact that I had chosen my favourite foods and I could envisage what I was eating/drinking, did make a difference to my acceptance of the untenable situation. Gradually, I experimented with small portions of everything I liked (one at a time so that I could identify possible problem foods) and nowadays I eat more or less all of those things.

I hope you manage to get something more satisfactory sorted soon.

Best wishes

Bill 
 

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I agree. Buy a really good blender. Also, an air-fryer can help make certain foods you simply don't like much more palatable.

I had colostomy surgery late August this year. My surgeon told me I could eat whatever I want when I went home. I do stay away from spicy foods and beans as they increase my output. I try not to eat whole grains either. Otherwise, I do pretty much eat whatever I want. I have stayed away from mushrooms, but I have even eaten salads.

LOL - Thank you!

Hey KDB, I would first find out why they are telling you to eat only certain foods. Once you know the why, you can fit foods other than what they suggested into your diet. For example, if they say, "no fat" and say you can only eat rice cakes, then you can add other no fat foods, not just rice cakes. If the reason for the suggested diet is your colostomy, then other colostomates on here can help you. But, yes, all of us on here need to chew well and drink a lot of fluids. You've been through the mill and are quite the survivor!

Thank you!

Thank you!

Thank you!

Hi KDB, as others have said, unless you have some specific medical condition that is not ostomy related, restricting your diet so radically is total hogwash! You need to ask them about this. If they are telling you to avoid all these foods just because of your ostomy, whether it's a colostomy, or an ileostomy, they are uninformed. You should be able to have a normal diet. I have an ileostomy, and eat everything. I eat whole grains, nuts and seeds, fruits with skins, all veggies, even the dreaded mushroom! I do chew really, really well, and do drink lots and lots of water and other liquids throughout the day. I'm thinking it's probably an ileostomy you have if they are telling you to salt your foods, as people with ileostomies do need to supplement their diets with salt. Your large bowel is the organ that retains the salt that your body needs, so without it, you will lose sodium. I drink lightly salted water, but you can add salt to your diet in any way you see fit. As long as you get the clearance from your doctor (that there isn't some other reason for the diet restrictions) start adding things into your diet slowly and one at a time, to see how well you will tolerate it. Don't go eating a large amount of any one thing, start with a small serving. Remember to chew really well and drink lots of water. The food in your mouth should be like mush before you swallow it, no big chunks. If I eat something really fibrous, like pineapple, for instance, I will often spit out pieces that just don't break down enough. Hopefully you will be back to enjoying a variety of foods again before long! Good luck and let us know how things work out for you. And welcome to the site, glad you found us. Don't be afraid to post any question you may have, even the gross stuff! We've all been there and seen it all!

Terry

Welcome to the group! Please feel free to ask anything on this site as I have found everyone to be super helpful and supportive! And there is a lot of humor that only ostomates can appreciate, lol.

I have an ileostomy and they gave me suggested and non-suggested foods... After a while, I now just eat what I want, chew, chew, chew, followed with water, and touch wood, all has passed....

Hi KDB, I've had an ileostomy for 30 some years and the only things I don't eat are raw veggies and nuts. But to get the benefits of raw veggies or fruits, I make smoothies with protein powder added and whole lactose-free milk with the fruit but not the veggies.

Sorry to hear you've had such poor doctors or nurses that are in the wrong job and have no idea what they're talking about.

Just eat it!

Just eat whatever you want to eat in small amounts at first and see how it goes down and out. Most of us can eat everything without any problems.

I expect you are healed. That should open up your meal choices. I use Yummly.com to help with recipes.

My immersion blender is my best friend.

With it, I pulverize salads to almost mush, but a salad tasting mush.

I make soups. Here is my invention:

Orange Soup: (the color, not the fruit)

1 butternut squash, peeled, seeded, cubed

1 sweet potato, peeled and cubed

1 1-pound bag of baby carrots

Coat all in veg. oil, salt and pepper, roast at 350 F for 1 hr.

Put into a large saucepan. Add 4 cups vegetable or chicken stock, 1 can of pumpkin puree, and blend.

Good with curry powder or garlic powder. Can be served hot or cold.

I eat any meat or fish, generally overcooked vegetables (except mushrooms, corn, and peas - pea soup ok tho - for mushrooms I use mushroom powder - great flavor enhancer!), bananas, canned peaches.

Hope this helps.

I've been making veggie soup off and on lately. Thank you so much for the recipe. I love squash.

Hi KDB! I've had colon surgery and they removed the whole sigmoid part of my colon due to the tumors. Now, I have a colostomy as a result of that operation. I am also undergoing chemotherapy right now (FOLFOX + targeted chemo) and am told by my doctors that I can eat anything so long as it is well-cooked, so no sushi and raw oysters for me. As of the moment, I eat almost anything from meat (fish, chicken, beef, pork), grains, nuts, vegetables, etc. I do, however, typically avoid green leafy vegetables because those things don't digest well apparently and I usually end up picking some small undigested leafy greens in my stoma bag (ew). You might want to go and get a second opinion on your diet. Nutrition is very important in our recovery.

It's really odd your diet is so restricted but I suggest you buy a good blender and start making smoothies. Adding banana, blueberries, nut butters, and protein powder will add the calories you need and the proteins to support muscle health. Slowly start adding some greens such as spinach.

Hi. I've had my ileostomy for 4 years now. In an abundance of caution and fear of hospitalizations for blockages, I still avoid nuts, seeds, mushrooms, popcorn, raw veggies and fruit (except bananas), gummy or chewy candy, etc., but pretty much everything else is up for consideration. In the early days of my ileo, I followed all of the "No" foods lists religiously until I realized that some of the items on those lists were only No's because they caused gas or odor; not blockages - which is my main concern. At first, I was even using a strainer to keep the seeds out of tomato sauce. I no longer do that. With time, I got more comfortable and less afraid, as I am sure you will too. As everyone else here has shared, we're all different as far as food tolerance goes, but the key to success is testing the waters with small portions at first, chewing everything thoroughly and drinking lots of water. I limit my caffeine intake, but still indulge in a soft piece of dark chocolate here and there. I eat chicken, turkey, hamburgers and even a tender steak once in a while. I get my veggies (except corn) in soups and stews and sometimes I even buy Gerber baby food fruit and veggies tubs. I feel almost normal now. Lol. I don't have much trust for some of the doctors' advice. When I asked my own surgeon what foods I could eat after my surgery, he said "Eat anything you want and just see what happens." No thanks, doc. I'd rather stay out of the hospital. I hope you decide to try some more foods soon because I believe that with every food success you have, you'll feel more and more like your old self and happier.

They just told me while I was at the hospital that they don't use diet plans for right after you receive or reverse an ostomy, and the same goes for removing a gall bladder. I asked why not, and they were like, "Eat what you did before." I was somewhat shocked.

When I had ileostomy surgery, my surgeon did not instruct the hospital to put me on any kind of special diet. He could have, as there were lots of patients who were on special diets - low fiber, low sodium, low sugar, etc. - but he told me to just "eat what you want." Thankfully, I had already been through a colostomy surgery and had a stoma nurse who had advised me on how to be really careful in the beginning and not to eat certain foods right away, to introduce things slowly, etc. If I had just listened to my surgeon, who knows what kind of trouble I might have gotten into. Lesson learned. Doctors don't seem to know much about diet. That's why it's so important to have an ostomy nurse. Sites like this are also really helpful.

Terry

It's easier for the don't list.. no hard raw veggies

No olives or mushrooms

No nuts, seeds, peels..I have diverticulitis

No whole wheat breads

No green salads or greens..

I keep to a minimum of spices like oregano and whatnot as it builds up

Don't eat much beans or peas.. because of skins on them and gas avoidance..

That's what my bariatric surgeon and oncologist said..

I have a right hemicolectomy / ileostomy.

And green beans kinda suck if they aren't well cooked because of the inside seeds.. they come out whole and kind of afraid for a blockage.

I always try and chew everything well..