What I Eat in a Day with an Ostomy | Let's Talk IBD
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- Опубліковано 16 жов 2023
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It has taken awhile for me to figure out how to really enjoy all of the foods I like and minimize the consequences with my ostomy. My stoma can be very reactive to some foods, so in today's video I share how I handle these symptoms with diet!
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ostomy #ibd #chronicillness
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Thank you Maggie, you were a light in the darkness when I first became an ostomate. I have a permanent colostomy and have had it for almost 2.5 years now.
At 57 years old I was considered disabled after my colostomy and spent all day every day preparing food and caring for myself and my Ostomy. It took up the whole day and I was incontinent and very I'll for the 1st 4 months. I was unable to do most of the things I had done before. I was in so much pain after eating that I had to cut out almost all fibre to manage my digestive pain by year 2. Mentally I was suffering and became anxious and fearful of anything Ostomy or food related. I would have an anxiety attack every time I had to do a bag change or shower. I wouldnt go anywhere just in case I had an accident or a leak and I was miserable.
I talked to a therapist but nobody can fix you except you. My family was suffering as I was so I went looking for help.
I had very little information outside of a brief video class and a book provided to me at the hospital until I searched for information on youtube. Doing that saved my physical and mental health and gave me the tools to start living my life again.
This year on April 1st I reached 194lbs, the heaviest I have ever been in my life. I had to be careful after radiation because of brittle pelvic bones so all winter exercise was out.
I started to experiment with lectin free foods, no skins or seeds which helped but I still had too much fibre in my diet and was depressed and uncomfortable.
I have since switched to a full carnivore diet and it has changed my life.
In 2019 I was diagnosed with severe frozen shoulder. It took years to get it diagnosed as arthritis and to find some relief with diet and exercise just in time to become an Ostomate in 2022.
The eventual relief I found was not in pill form it was in the form of a carnivore diet. I started it to kill my remaining cancers found in Feb 2023 in a pet scan. The side benefit is zero digestive pain, zero shoulder pain and easy weight loss of 32lbs over 5 months. My hair shines, my teeth feel solid and I have no gum bleeding anymore.
The cancers are still growing but small and hopefully soon they will start to shrink and disappear. I've got nothing to lose by trying it.
I maintain a liquid output on the Carnivore diet as I only output a 1/4 to 1/2 a cup per day with zero digestive pain. I have added a wax ring to level out my barrier to avoid leaking but my skin has tightened up and everything just looks and works better. My cellulite is mostly gone and my scars are flat and white. Moana my stoma is shiny and happy with no rashes or other issues. I nolonger have panic attacks when changing my bag. I have energy and planted and cared for a yard and a garden to feed the rest of my family.
Prior to starting carnivore I was in the bathroom 10 times a day to empty my bag which was ok but now its 2 minutes 2 or 3 times a day. I use a lot less supplies now too so have a really nice stock pile for hard times which is a huge bonus.
I drink 64oz to 128oz per day of filtered water. I take one dose of restoralax in the morning and also take AG1 sporadically, vitamin d3k2 daily and home made electrolytes daily. I add salt and butter to everything and my blood work is excellent.
I've cut back on the AG1 for now because of the sugar content.
I've had stage 3 colon cancer 2017, stage 4 metastised colon cancer in my cervix which ended up getting me a radical hysterectomy, bladder surgery and then my colon died on the table leaving me an permanent Ostomate. In 2023 I had a pet scan to find any other sites and we found 6. The stage 4 metastsised colon cancer in the bottom left lung was removed on March 28, 2023.
I started my carnivore journey on May 10th and am feeling fantastic! I look and feel better than I have in 10 years! Good luck to you all!
What helps me on my high input days is plantain chips and as a sweet treat, marshmallow does the trick too. Oatmeal and nut butters and bananas are part of my everyday diet too.
I’ve had my osteomy for 14 years too! I know exactly what your talking about. So true! ❤😅
I just got home from 7 fays in the hospital. I had surgery for a small bowel obstruction. This was caused by scar tissue. I am now trying to regulate my ostomy again.
Oh man, I'm sorry to hear that! I hope you can get it back to your normal asap!
I am new with ileostomy. My old loop transverse stoma is a crater... My large intestine burst 6 weeks ago. So some sepsis and a new ostomy... It's a new life. I miss my colostomy... It was more predictable. But there's no way back.
Your youtube channel have helpt me a lot.
(pizza is amazing output 😂) 6:35
I'm sorry to hear that you have nausea in the mornings. Since my ostomy surgery , almost two years ago, I have to be careful about my fiber intake, too. It messes with my digestion. I've read that I should have some output about every 40 minutes. I do not. I, rarely, have to empty my bag more than twice a day. Unless, I just have to burp it. If I remember correctly, they took some of my colon but not all of it. I notice that I'm thirsty a lot. Thanks for the videos, Maggie. I watched your clothing video. You look nice in your outfits. I'm sticking with loose clothing.
My belly loves oatmeal too. I make steel cut oats overnight with oatmilk every day. It's so yummy with some maple syrup 😋
Hello, and good seeing you again and thank you for sharing this with us as I like to try something new as well .take care 😊
As a fellow ostomy wearer of 22 years, i can't take vitamin tablets so i have to use vitamin sprays. Have you ever considered that the tablets you take everyday may be effecting your output. Understand the feeling of exhaustion. Love from Ireland 🇮🇪
I've only started taking my vitamins consistently recently, so I don't believe this is the issue!
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I have had my ileostomy since 1997. Over the years it has become more fluid. I make sure to have a banana in the morning to help with my liquid output. I was diagnosed with UC in my early 20's and continued to have severe symptoms. I spent 4 years on steroids (late 1980's treatment) before I went to a well known hospital, Johns Hopkins. At Johns Hopkins I was diagnosed with UC (no surprise) but also IBS (Irritable Bowel Syndrome). I have been surprised to notice a pattern in having 'fluid' based stool and then normal or paste like stool. It is not uncommon for those of us diagnosed with Inflammatory Bowel Disease that we also have IBS. Hope you consider this. Love watching your videos.
Have you ever tried acorn squash is a flavor in between a butternut and a sweet potato excellent
Thank you! ❤
Listening to you talk about what you eat made me realise how different we can be even with having the same surgery. Unlike you Broccoli with the larger stalks cut off along with carrots are my go to and as long as I drink plenty of water too I’m fine with that. Things like sweet potato ,butternut squash ,seeds and berries other than raspberries I have problems with. I also have Celiac disease as well an Ostomy so have to be gluten free and the things they add to GF bread sends everything through much too fast so if I’m going out I have to be extra careful about what I’m eating. I tried electrolytes but again the things they add to it such as artificial sweetener is a nightmare for me and caused me to lose more fluid which obviously defeated the object. I do my best with what I know and have but at times it does feel exhausting .
I
I add maple syrup, cinnamon, nutmeg, and clove to my oatmeal with diced apples.
I struggled with IBD for years, and my food just went right through me when I was having a bout. My gastroenterologist recommended medication and dietary changes. I went from his office to the book store and bought a book on bean recipes and grain recipes. My tummy is so happy when I eat beans! His explanations were very similar to what you said here, and it was life changing!! I haven't been on meds since my first year and now I can control it with diet for the most part. I cannot eat iceberg lettuce or real high fat foods, but beans, grains and whole grain bread just does wonders. I love vegetables and fruit so I have learned how to balance it so I can eat a lot of those and not have trouble. It's amazing how it all works. So happy for you. One last thing, the banza pasta, which is made from chickpeas, and the red lentil pasta are very good and serve the same purpose.
I don't have an ostomy, but I do have UC and will have to try some of these foods to see if it helps me not need to go so often! I do well with oatmeal and also beans incorporated into meals/higher fiber foods as well
I don’t have a colon and have had a jpouch for 8 months. I can eat most foods if I take psyllium husk before each meal.
Love your lunch and dinner menu. I eat those foods. However I’m not into oatmeal and bread will send me to the bathroom real quick. So a tweak here and there is fine.
That was a learning curve to find out what foods your tummy likes/dislike
I had exactly what you described with output. Had to go to get fluid several times. No longer have an ostomy but having a lot of problems due to pelvic radiation.
Oh yes that fish problem... I never understand why! First I get so tasty on fish and afterwards only complaints ;) Even when wrapped in smashed potatoes and salad. I'll try your combination with broccoli!
Try eating marshmallows Maggie, hospitals often give them to patients in order to stop loose outputs. 🤗 🐨 🦘🦘
Do u know if it helps a person without a ilestomy?
@@shimmer8289 Apparently it does, many people that are hospitalised due to other types of ailments are given marshmallows if they are having diarrhoea problems.
@@MrOGREATWISEONE they are now on my grocery list thsnk u
Hi, Maggie. It's been a while since I contributed any ideas... I'm walking into my seventieth year shortly, After nine years, I still have problems with fibrous vegetables even when cooked way down, and not just the fibers but the gas... long story short I have to have vegetables in my diet, so who has the least problems with the foods they aren't allergic to?.. Babies and Toddlers. The vegetables and other foods that are created for them are pretty much pure and unseasoned so I can Doctor it up, the pouches are the perfect serving size for me especially to take with me when I travel.
Best wishes to you.
I had a temporary ileostomy for eight months after I got bowel cancer. I had to be careful about what I ate as I couldn’t digest some things, e.g. mushrooms. I too had the experience of rapidly filling bags. I described it to my oncologist as “it was like a tap had been turned on”. It was awful. Once I’d had the reversal I then had to find out how my much smaller bowel would cope with things and I found that eating too much fat was the cause. So that was the problem when I still had the bag/pouch! Apparently when you have an ileostomy the bile duct can be affected and this causes too much water to be pulled in….all I’d done was have a lot of homemade salad dressing on my salad! I too was told about the marshmallows but then you’re eating so much sugar….which isn’t good for you.
I did pretty strict keto after my reversal so eating “good” fats was part of that. I had to listen to my body to see how much fat I could take. I rarely have a problem with diarrhoea nowadays but if I do it’s the same thing. Sadly too much milk chocolate has now been added to the list.
Also I had blockages because of skins on tomatoes. I used to eat several small tomatoes with breakfast and I didn’t remove the skins. Over several days these mounted up. My output would be quite low and I’d think I was doing well. But then the dam burst! I realised it was the skins. So now I don’t eat small tomatoes and instead buy big ones and skin them and chop them up. I do a batch every few days. No trouble since. I expect this was happening when I had the big/pouch but I didn’t realise at the time. I now also cut the skin off cucumbers etc and skin red peppers. It has made a huge difference. Hope this information helps for other people. What works for me may work for them/you.
I've had my ileostomy for a bit over 11 years. Oatmeal. Even instant oatmeal. Comes out like cement (blockage time). A little too much and I'd end up in the ER with a severe blockage. So I never eat it. On the other hand I've been able to eat bags of popcorn with only minor blockages. But tortilla chips even when chewed well usually give me blockages. Interesting how different everyone is.
Thanks madam vry much for ur video even my big sis has same bag so I can tell hr Abt fd or she gets vomiting every week stools becoz she controls hr diet or hr fd habits
Found that mushrooms cause my colostomy to get very gassy and to fflloowww like a river… I am cautious when I eat mushrooms even though I love ‘em. I am not a fan of oatmeal…makes my stoma flow. Thanks for the suggestions, Maggie.
Hey Maggie!!!!! ❤ 😊
Hi! :)
My doctor said there are 3 things that will slow down my output: bananas, rice, and marshmallows. I don't like bananas, I can't eat rice all day long, so it's marshmallows. Depending of the consistency, I will eat 1 or 2 large marshmallows. I treat them like (good-tasting) medicine and don't eat them unless I need to. It works for me.
I don't have an stoma but 5 months ago I had a severe abcess and fistula. After abcess was drained I've experiences loose bm many days each hour. I've had considerable weight loss this year 57 lbs. The bms are very very difficult as I still have a seton and it causes distress. I think I've developed symptoms of IBD ie diareahha, dark stools, white stools and occasionally normal stools. I control it by eating very little so little can come out. I'm quite distressed and I have an unresponsive surgeon and gp. Argh
I find sandwiches of any kind help slow down my ostomy output, including burgers. Also pastas, rice of course, and even pizza. For some reason oatmeal hasn't been easy lately; seems to cause leakage. Not sure why. Marshmallows haven't worked for me. Everyone's different I guess!
Thank you for sharing some of the foods and or liquids that help you. 😊. It is very interesting. And i hope it is helping you. ❤. What is the name of the fiber( powder) you showed? If you may? Because I think it may help me? But wish to ask my dietician about it.
It is Garden of Life fiber!
Thank you for the info Maggie. 😊
I feel like I will get my output consistent for a few weeks and then my ileostomy acts as if it is brand new for a few and we are back at square one. It can be very distressing!
I had a constant problem with output with an illeostomy. I had to go to my doctor’s office for fluid. I no longer have an ostomy but still suffer from ongoing problems from diarrhea. I had pelvic radiation and chemotherapy.
So did/do I. See my post earlier today.
I've been experiencing bloody stool and abdominal pain recently and I have a family history of intestinal problems. My grandpa and aunt both had a stoma. And I'm terrified that I inherited what they have, because I'm not one of those people who can just chill at home and change the bag whenever needed while my spouse goes out and works. I'm a teacher and and if something happens in the middle of a class in front of my students or if I have to change it every 20 minutes, that would be a huge problem.
Hi~ I love fish (sushi being one of my favorite things to eat) however I find whenever I have it my bag retains a fishy odor because of the output. I normally just change the appliance however I can’t do this daily as my skin is sensitive. What do you do/use for odor control?
Would Imodium or its generic equivalent be applicable in this case? if so, the packaging of the OTC version is such that you would need to carry with you a pair of scissors! In that situation, getting the prescription form would be well advised as the Rx version is in capsule form in a bottle!
That's the med I talked about in the video - I've tried loperamide and lomotil and neither tend to do much!
Loperamide is the generic of immodium. I don't have an ostomy, but my Crohn's Disease gives me constant diarrhea. prescription Loperamide at 6 2mg capsules a day is the best at slowing my intestines down. It does help, but does not eliminate the diarrhea.
That's exactly my experience! Sometimes it helps, but it takes a lot and I have to be very specific when I take it - at least an hour before eating or it doesn't help at all. Really 2 hours for the best effect!
I love oatmeal. I never find it slimy. I like plain oatmeal.
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My teen boys LOVE Chomps.
I am on low fibre. I am possibly on the last bit of getting all the old waste out of my body. My waste is diarrhoea, liquid waste.
That's because the hospital has liquidised my waste 3 times in one year. God bless them😊
I find cooking oatmeal on the stovetop is less slimy than cooking in the microwave.
My big concern would be does your body absorb all the vitamins and minerals it needs?
Some people with ostomys do suffer with nutritional deficiencies, that is why it's good to be periodically tested for them at your GI specialists discretion. You can take supplements or drink meal replacers to make up for it, or in extreme cases have IV nutrition. This is not the case for everyone, and if it is not all the time.
Can you take Metamucil? I use it daily to keep my ongoing diarrhea in check....just a suggestion.
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Is it safe to assume that a continent ileostomy was never an option for you?
No, it was - I actually went to a seminar for BCIR surgery years back but didn't want to mess with the success I had with my current ostomy. I was worried about pouchitis!
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The thing that annoys me most is people that are inadequate in actions. Show no moral consciousness
Seems like the more fluid I drink, the more out put there is.