A perfect diet - is there such a thing for a colostomy "sufferer"? I've read on many websites and forums things like: "After a few months you'll be able to eat exactly what you used to eat." Not true! Nine months post-op and I still can't touch fruit, veg (except potatoes and carrots), cereals, or my beloved Hovis Wholemeal. I envy the people who will be having sprouts with their Christmas dinner!
Food-wise, life is getting tedious (boo-hoo!).
I'm 1 year post-op and have a permanent colostomy. I now eat most everything without trouble. The only foods I avoid are popcorn, raisins, grapes, and fruit with the skin on. Once peeled, I can eat fruit with no problem.
Some food and drinks will result in watery output or gas. I anticipate this, so I eat that stuff early in the day. By the time I go to bed, it's out of my system.
After I was discharged from the hospital, I decided, "No more junk food, fried food, candy, or soda." I don't miss any of it.
Start out eating small, well-chewed amounts. See what happens. Some people create a personal food diary to track what works and what doesn't.
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Ok, ask any full-term pregnant woman - 9 months seems like a long, long time, but in fact, when it comes to stomas, you are pretty much “early on” in your ostomy journey. 3+ year ileostomate here and still discovering new things the docs don't tell you. In their defense (and you should know I rarely defend them), they can't possibly cover all the information you will later feel was so important to know, and even if they told you at the time of your personal trauma and head-spin, you may not have remembered everything they said. Their total responsibility is to perform a perfect surgery and not to then scare you with all the information you will need for the remainder of an ostomy life.
The fact that you found this website is a great big KUDOS to you 👏👏👏. For me, my discovery of Meetanostomate (a year after my surgery) was indeed a mind and body lifesaver.
The folks on here are not afraid to be straightforward about ostomy-related stuff, and being anonymous gives all a chance to speak freely and straight up.
Read, learn, and use your own good judgment, and hopefully, you will develop a “knowledge is power” (but only if you know how to acquire it) and Osto life will become easier. It does take time - especially if your own good judgment needs to be smacked upside the head once in a while. For example, I never could understand the purpose of Metamucil or Psyllium Fiber powders - weren't these for constipation? Having an ileostomy (very different than colostomy in terms of output), I never used it - well, hells-bells - lesson learned! It may end up being a bag changer for me - only took me 3 years! jb
Hello Bag Changer
You say [elsewhere on site] that 2023 has not been a good year for you...
Envy to be able to eat freely...
I have had my colectomy for many years... [and my mother had a colostomy]... hence the reply to this diet post:
In my experience, I have found over many years/different situations I have experienced, that at times of exacerbation, cutting back to basics of what few types of food suit us personally - although 'boring' - is the best way forward.
If only potatoes, for example - because from the point of 'good stability' for us personally - we can then add a very small amount of one single food and then monitor that addition... [if OK, continue in moderation - if not, dismiss for the moment - or reconsider in what form to try it again]
And gently, little by little, [yes, I know it is laborious - been there - we can add another - and if the result is 'iffy' - then go back to the OK point - yours being potato and carrot for example - and maybe just have one - and I literally mean 'one' sprout [for example] - and savor it - and "surround" that one sprout by then eating a little more potato after it "to cushion" its throughput... In my experience, you can then add another small something, etc... and by doing this, one can often build up to an increased range of what you like - but in moderation.
It's all about balance and learning what the remaining abdominal tract can work best with [and I really mean work best with - not just tolerate - but actually work well and OK!]
Hope this may help...
A little personal sharing here: after 8 years of careful management following my colectomy, I was able to go back to a pretty open range of foods - but I learned in what proportion and in what combination my system would tolerate what... yet when a 'flare-up' occurred, then back to basics - allow a "settling" and then onward - it's all about balance and learning what is OK for us personally.
[Yet did you know, for example, that a tomato is related to the nasturtium which is poisonous - yet I love tomatoes... so undaunted, sometimes I have to revert to de-seeding - and only having half a tomato [along with other balancing food] at any one time - and, even to this day, I still de-skin a tomato [cut into 4 and use a sharp knife on a board to de-skin each quarter - discard the skin or make into roses for decoration!] :-) ... Just one example... there are many others. But it does mean I can still eat tomato, yet if I did not manage how I eat it, I would be literally on my back! But many of us eat capers! Also in context, the wild ancestor of the carrot was also poisonous.
Listen to your body - it does know best... but we often just ignore ourselves... You, Bag-Changer, have [presumably] been used to eating pretty much all sorts of food - probably whatever you fancy - and the pathways in our brains get "used" to our preferences for eating/doing things, etc... but we can take stock and change... and, honestly, it can become better, once we get the true hang of what may be better for us [and like, in moderation] - our former preferences once we know how best to treat ourselves.
I know somebody well, [who actually does not have a colectomy] whose staple diet is potatoes, fish, and carrots - yet a lot of commercially grown carrots hold no appeal for him whatsoever.
Try to stay positive.
I know it's rather a f--k at times - but we can do this! - Keep on trucking...
One could conclude the 'perfect' diet is an ever-evolving process - but we can work out what our staple OKs are - and build on those for a happy variety, which needs to be modified from time to time.
Big smile
Keep experimenting.
Best wishes for a less 'orrible time going forward
Sending you and yours festive wishes
Jayne
Absolutely, just breathe - I could not agree more with all the points you have so well voiced...
Had I encountered such a thoughtful exchange - so many, many moons ago - I would have been extremely well prepared with the experience of another which is mindful and balanced.
If there is one point within your observations that is possibly well to understand, it is that of TIMING...
Sometimes we cannot or are not ready to take on board that which we need to open our awareness toward... IT TAKES TIME AND FOCUS AND CONSISTENCY to grow into ourselves.
And yes, medics, in whatever field of specialty, can offer the best of their action at any one time - the rest is down to each individual.
Thank you for the contributions of all.
Season's greetings,
Jayne
Wow! Thank you for your excellent, helpful replies. I'll read through them again, probably many times, and take on board what has been said.
What a wonderful community! I feel like I've been welcomed with open arms. Thank you so much - all of you.
Best wishes for the holidays, whether Christian or not - I never like to assume.
Third and last time - thank you!
Hey, I'm restricted in multiple ways. I have short gut syndrome and can only eat beige foods. I am used to it now, and I am grateful I can eat at all 😃
Ok, here's a concept for eating and having an ostomy: as long as whatever food isn't plugging you up with a blockage or a detriment to your health, enjoy it. Who cares if you have to go to the bathroom? Every human being does, ostomy or not. Eat what you enjoy in small amounts and live. Thinking you have to avoid 95% of the good stuff is ridiculous.
Hi there! I agree with you. Doc told me, “Eat what is tasty,” but it's not that easy. I'm 5.5 months postop and barely started eating fresh apples (no skin) with peanut butter because that's my fave snack. I first tried 1/4 of an apple, then 1/2, then the whole apple. This was a month and a half in the making. If there is something you really want to eat, try it once a week. If no problems with a super small serving, then gradually add to the serving size. But agreed, the whole “you can go back to eating your normal diet” is untrue for me as well. However, I'm super hopeful that all will go back to normal later down the line.
Hey Bag-changer
Look into Carnivore.
I had stage 3 colon cancer in 2017. The cancer spread through my bloodstream during that first surgery.
I became an ostomate on June 1, 2021. I went in for metastasized colon cancer in my cervix to get a radical hysterectomy. I woke up with a permanent colostomy, a radical hysterectomy, and bladder surgery leaving me incontinent for 6 to 8 weeks.
I was told low fiber (2% or less per meal), high fat and protein, and to try adding back one food at a time to find what I could tolerate.
Nothing agreed with me and my weight skyrocketed to 194 lbs from 174. I was in constant arthritic and digestive pain with bloating, prolapses, leaks, rashes, etc., and mentally I was drowning. I had made myself dependent on my son-in-law, got my affairs in order, and was waiting for the next surgery, this time on my left lung. I lost the bottom third. I have another cancer in the top of the same lung waiting to get big enough for surgery.
I decided to try Carnivore in May 2023 after lung surgery.
I had a PET scan that shows 7 more spots suspected to be metastasized colon cancer. Chemo and radiation don't work for this colon cancer.
I started researching separately from the doctors and oncologists.
Carnivore popped up on YouTube with doctors who live the lifestyle and cancer patients claiming to be cured.
I researched and shopped, made a menu plan, and started on June 1, 2023. I had nothing to lose by trying for 90 days.
I have been on Carnivore for 214 days since then.
I have no leakages unless I don't close the flange properly lol. My stomach is now flat and mostly even, and I've gone back to one wax ring per change and only one change a week. I was able to go on a short holiday, eat at restaurants, and drive for long stretches. My hair, teeth, skin, and brain have improved, and I've had zero digestive pain in 6 months.
I'm not sure if the cancer has shrunken until my next CT scan in March; the last one had minimal growth in 2 out of 7. My thumb pain is from a growth between the knuckles (not cancer) and a little bit of arthritis, but my chiropractor has helped with that immensely.
I'm now at a much more manageable 157 lbs, down 37 lbs from 194.
I turn 60 on New Year's Day but feel 40 again, which is good because my first grandchild arrives in late March!
I eat when I'm hungry and eat until I'm full. I add salt and butter to everything.
FYI, don't eat liquid fat when you first start as it gives you watery output (in case that bothers you). My output is minimal and liquid, but I'm not deficient in any vitamins or minerals, and I feel and look great compared to the last 6 years. I can happily live like this!!
Try it for 90 days to see if it helps you. Best of luck.
Terri
Well, I've had my ileostomy for 30+ years and eat almost anything I want. I just chew, chew, chew, chew, and chew more. But it took a very long time of experimenting over the years. If I have salad, yes, it comes out in my bag, but I still eat them with the idea of chewing well. I do eat popcorn too! Sometimes I will take a digestive enzyme beforehand to avoid blockage. For me, I do stay away from mushrooms and coconut; they have caused hospital stays for blockages. Some foods cause more watery output or thick output. Trial and error for me.
