Bowel Surgery and Diet
If you are reading this, most likely you have recently had bowel surgery to fit a colostomy or ileostomy. This page will introduce you to some basic advice on diet to help you eat well with your stoma. However, advice from your treatment team supersedes the advice on this page.
Unlike surgeries and treatments for most other cancers – bowel surgery calls for extra care and attention with the diet and ways of eating. For some of you the stoma will be permanent. For others, it will be a temporary measure. Regardless of your situation there are many things you can do to ensure you can eat a wide range of nutritious, energising foods. Although there are some differences in how and what can be eaten depending on whether you have a colostomy or an ileostomy, eating healthily and enjoyably is achievable with both.
The main ‘rules’ for both colostomy and ileostomy are:
Chew your food well – digestion starts in the mouth
Drink plenty of fluids, around between 1.5 and 2 litres a day
Include salt in the diet
When you are able to, eat enough fibre to lessen risk of constipation
Eat regular meals to get a regular bowel pattern (less likely to be inconvenienced)
Ileostomy – what is it?
Ileostomy is a surgical opening at the small bowel to let faeces bypass the large bowel.
The main food complaint of those with ileostomies is that, because of the narrowness of the ileum, some foods can get stuck. This may be less of a problem for those with colostomies but it can be an issue for anyone with a stoma. It is advised to eat small mouthfuls, especially of fibre containing foods and meats, and to chew until the food is almost liquid in the mouth.
In addition, the first few two months after your operation the area will be swollen and more prone to blockage. You will probably have to restrict the type and amount of foods you eat. After this time the swelling will subside and you will be encouraged to get back to a normal diet, including fibre containing foods, but still being mindful of thorough chewing.
When you are ready to start eating a more varied diet, it is a good idea to keep a food diary, adding one food at a time to see how you feel. If you add more than one it can be difficult to know what may be causing a problem, or in fact be fine to eat. Everyone is individual about how they react to foods after a stoma, so it is a case of experimenting and recording your reactions. Over time you should find that you can include most things that you like.
Colostomy – what is it?
Colostomies are lower down than ileostomies, and have an opening at the large bowel to let faeces bypass the rectum.
One of the main issues with colostomies is flatulence. In a way flatulence is good, it means the stoma is working well, but it is of course unpleasant. Most people have to figure out with trial and error which foods cause them excess wind. Foods that previously caused wind will probably continue to do so. It tends to settle down somewhat once surgical swelling subsides but it will still be an issue for many.
To help avoid wind you should also chew your food well and not talk while eating. This prevents trapped air from causing wind.
Keeping a food diary can help you identify foods that cause you problems. It is a good idea to give a suspect food a few ‘tries’ before deciding to cut it out of your diet, especially if it is very nutritious. If most foods in a food group cause you problems discuss this with your GP who may refer you to a dietitian.
Short Bowel Syndrome – a special case
If you have had more than 50 per cent of your bowel removed you very likely will have the malabsorptive condition, Short Bowel Syndrome (SBS). Symptoms include chronic diarrhoea/high ostomy output, abdominal cramping, dehydration, feelings of heartburn, and painful, visible abdominal bloating. This condition can quickly lead to malnutrition.
If you have recently had extensive bowel surgery that may result in SBS, please follow the advice of your treatment or surgical team. The Canadian GI Society has a very good page on
Short Bowel Syndrome and Diet that will complement advice from your treatment team.
Foods that can cause blockages (by incompletely digested food)
Because of swelling the following foods can cause difficulties just after either surgery, and may be more challenging for those living with an ileostomy. Those with either type of stoma should be encouraged to try small amounts of these foods a few months after surgery as any of them may be absolutely fine for you if thoroughly chewed in small amounts.
Celery, nuts, coconut, mushrooms, sweetcorn, cucumbers, oranges, fruit peels and skin, cabbage, pak choi and other Chinese leaves, nuts, seeds, pineapple, pickles, olives, dried fruit, some of the sturdier leafy greens such as kale and chard (young leaves should be okay).
Food and drink that increases bag odour
These foods have their own smell when digested matter enters the stoma.
Broccoli, cabbage, asparagus, onions, garlic, peanut butter, strong cheese, eggs, alcohol, cod liver oil, fish, seafood, some vitamins (B ones especially)
Food and drink that decreases bag odour
Foods that neutralise odorous foods include: cranberry juice, tomato juice, parsley, fennel tea, buttermilk, live/bio yogurt, kefir
Gas-forming foods
Any of these foods can cause flatulence but not all of them will for everyone. Try and introduce one of these foods at a time, using a food diary to track your reactions.
Excess fruit, excess dairy, excess wheat products, nuts, soy, Quorn, carbonated drinks, Champagne, other alcohol but especially beer, beans, cucumbers, radishes, cabbages, onions, leeks, Brussels sprouts, cauliflower
Actions that promote wind
Lying down after meals
Swallowing air
Swallowing large amounts of food at once
Using a straw
Chewing gum and smoking – gas forms with continued chewing and with the ‘style’ of breathing that occurs with smoking
Poorly fitting dentures (not an action of course!)
Foods to help constipation
Warm/hot drinks, coffee, fruit and freshly pressed/squeezed juices, vegetables, salad leaves, dried fruit (especially figs, prunes and pears – poached, as a juice, or as a compote).
Foods to help diarrhoea
It is very important to replace lost fluids and electrolytes such as sodium and potassium, after a bout of diarrhoea. The colon normally absorbs water and electrolytes from the stool so when the bowel is gone you lose more water. With loose or watery stools it is even more important to keep a good fluid intake, including vegetable juice, strained soups, stock, sports drinks and coconut water (naturally high in potassium; Vita Coco recommended), as well as water. Tea and coffee may worsen diarrhoea.
Bananas, applesauce, white rice, white toast, peanut butter
Foods that may cause diarrhoea
Fresh fruit, fruit juices (especially prune, apple and grape), spicy foods, sugar, chocolate, caffeine, sugar substitutes such as Xylitol and mannitol (in gums and sweets)
Other Tips
Regular eating encourages regular bowel patterns: 4-6 small meals may work better for you than 3 normal sized ones. Some people find that having their main meal at lunch and a smaller meal at dinner reduces night output.
Certain substances in food can colour output and bile that can’t be reabsorbed can cause yellow or green stools, especially when you have diarrhoea or rapid bowel action. Beets, broccoli, asparagus, spinach and some meds that settle the tummy can colour or darken the stool.
Don’t use bulking agents unless instructed, but anti-diarrhoeal meds are okay.
Exercise is great for constipation and is of course vital to keeping weight in check.
Last Updated: April 2019
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My dad has just had lleostomies done,you do not mention what foods he actually can eat. It would be very usefull to know this. Thank you
Basically things not on the list. With ileostomies it is a very individual thing, which is frustrating as a person with the ileostomy, as well as carers & loved ones. Keeping a food and symptom diary will help to identify the foods that are best. Most people find that they can eventually eat most anything, once the swelling has subsided and everything settles down internally. Chewing well and taking time to eat is often a big help.
Hi on Jan 26th I had a reconnect of a colostomy and wound up with ileostomy I don’t know what to eat either if you know I would be thrilled if you could help me out thanks donna
l seen to get diarrhoea with my ileostomy when am sleeping. Any reason for that?.
HI, without knowing your case it would be hard to say. And I’m not a nurse or doctor. Here is a link to something that may be useful to read. The third answer down looks like good information. I would check with your nurse or doctor for clarification, especially if it is really only an issue at night.http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=14805
Can I eat salads without tomatoes. I just had my surgery on the 13th of November.
Hi there. If its going against advice, no. But if the advice was to try gradually increasing fibre, then plain lettuce should be okay. It is always a good idea to try one ‘new’ thing at a time to gauge your reaction. Listen to your body. Different advice for different types of bowel surgery but it is often up to the individual to know when it’s right. If bowel calm with strict low fibre then adding one thing at a time should be okay, with medium fibre a first option. Things like beans and nuts would always be much later. Hope this helps. Best wishes.
Kelly..I have had my ileostomy for 4months now and I’m really confused about vitamin supplements…is fish oil ok to take…also going on my first plane ride since operation..is Dramamine safe to take..thank you for your help
Hi Sue. Thanks for your questions.You may have difficulty absorbing any number of fat-soluble vitamins, as well as some minerals so it is best to seek advice from your doctor to make sure you are adequately covered. Here is a list of nutrients that may needed supplementation: http://bit.ly/11tpKHN Fish oil should be okay but eating oily fish twice a week is even better. Regarding dramamine, only the injected form seems potentially problematic but again, just double check with your doctor. Actually your pharmacist would probably have a better idea. Ask pharmacist about both queries. Bon voyage!
Have had an ileostomy for 4 years and would love to have a spinach salad. Can eat nuts and tomatoes without any problem. Just nervous to try a salad. Thanks in advance for your answer.
Barb
Barb, if you are able to handle nuts – and that would’ve been a big step, very daring! – you could think about trying spinach. But before you set your heart on it as a salad maybe see how you go with a small amount wilted down first. Good luck!
Hi had my ileostomy for six years now but the past 2 weeks I’ve been getting a stinging as it emptys in to my bag it hurts like mad any advice thanks
Ray, you may have an infection. Please make an appointment with your doctor. All the best, Kellie
Hello Kelly first your site was the only I came across with out front info I just got a colostomy I just got home my wife is doing her best to find simple recipe book to help her. The colostomy will be reversed in 4 months but I am so scared to eat anything but oatmeal and pot soup trying some apple sauce next can you recommend a book to purchase I did not see if you produce one if you do would love to get it, I miss my English muffins thanks for any help here in Virginia Steve
Hi Steve. I dont have a book out yet as I work full-time in my ‘all-cancers’ job (I am not a specialist dietitian in GI area), and I don’t know if there are any books. But most people I see find that, under hospital guidance for your own surgery, keeping a food diary and only adding in one new food a day can help keep track of what’s good and not good at present. Don’t be too frightened of the colostomy – it is a good thing! Look at the link to the food fibre list on either the page you commented on, or in low fibre recipes page (can’t remember which page links) to get an idea of what typical fibre counts are and go from there, using guidance from the eat well with… page. Unless you are at risk of a bowel blockage (which the colostomy eliminates pretty much) the amount of fibre you consume is flexible and purely based on your comfort level and allowing the surgery site to heal.Most doctors want patients to move onto fibre as soon as they are able, so please know that fibre is good, but just gently reintroducing at first. Have a look at the low fibre recipe page to give an idea of the range of choice. You may be pleasantly surprised.
A friend of mine who has a loop ileostomy has asked me for help on her diet. I am a raw vegan and do detox juicing. Before I advise her I am doing a large research on the subject. Could you recommend links and people who have researched into this area. It goes without saying all my recommendation would go through her doctors approval
I’m sorry but I don’t have any loop ileostomy and juice detox information or research links. Good luck though.
:’) This blog is wonderful. I am 7 years post opt from a bowel reconstruction and I still have lots of issues with my digestive system :'(. For one I am very active and I refuse to not eat fruits and veggies. I want to be healthy. I have learned a lot through trial and error. I can tolerate whole wheat products and one serving of nuts. I ate a spinach salad the other day with grilled salmon. No diarrhea but very smelly gas. Is there something else I could add to my meal to balance things out while eating my slad. Or should I just give up on it?
Oh, I wouldn’t give up but perhaps only have such foods that you enjoy but give you unpleasant side effects in the comfort of your own home. Some of us without your surgical issues will have foods that just don’t agree with us on some level but that we love them so much we sacrifice a bit of comfort (or dignity!) to enjoy them. As long as it goes through okay and you aren’t in any lasting distress then I would just suck up that experience. Me and chickpeas don’t really get on but I eat a little now and then because the two-day pain is worth it! Hope you are well otherwise and thanks for your kind opening line 😀
Thanks for posting. I just got a colostomy and appreciate the info here. However, I would like to add that its a good idea to take 2g/day of fish oil whether or not you have an ostomy. Fish is the main source of Omega-3 fat in the modern diet. Its very important to balance Omega-3/6 intake at 1:1-2. Most Americans eat 1:20 mostly due to rancid polyunsaturated fats in vegetable oils. No doubt its harder to absorb nutrients if your ostomy is in your small intestine, so it may be a good idea to consume even more.
I agree with you about omega 3 fatty acids. We prefer people to obtain it from oily fish rather than supplements as there are some who shouldn’t be advised to take it in supplement form. But yes, most of us have far too much 6 and not enough 3. Our processed diets and not enough fish are largely to blame.
my mom just got her eliostomy,, not sure what she can eat that will give her energy.. she has no desire to eat.. she isn’t happy with her ostomy.. she has been battling chromes desiese sine 1995…
I hope you find this page useful in helping her think about what to eat. It will time for area to heal and to feel completely well but the ileostomy will improve her life immeasurably.
I take care of my mother in law who lives with us now and has an ileostomy and being a cardiac nurse I’m clueless! This is a great resource for me Thanks!!
I probably need to add more to it soon, but I am glad you approve! Thanks, Susan
Hi, I am 8 1/2 years post op after a total colonectomy and have an ileostomy. I find I can eat most foods, even rye bread and spelt pasta, but have trouble with quinoa, cous cous, buckwheat and brown rice. I can eat most vegetables, but notice more output when I have green veg, I don’t eat salad leaves apart from spinach (seems easier to chew right down when raw and can eat cooked too). I have the best health since I was 9 yrs old (diagnosed with U.C then) and my immune system is really healthy. So glad I had the op! I have been experimenting with raw foods, but have not found it easy to digest. I have a vitamix blender, so use that to make juices and smoothies and add in the foods that are hard to digest, such as flaxseeds, sunflower/pumpkin seeds, raw oats, nuts etc. I have found blending the easiest way to get those foods into my diet as I think I really need them. I also supplement with Vit B, D and C and iron and a few other trace elements all in liquid form so I know they can be easily assimilated. Good luck to anyone else in a similar position and thanks for this resource.
Ruth I realise you posted this 2 years ago but I just couldn’t get over what you wrote. I had a totalectomy about 7 years ago. The foods you can/can’t tolerate are the same for me. Basically everything you said is what I do as well. What led me to this website was a search about quinoa…I’m thinking it’s something I should stay away from. When you tried quinoa did you find you were quite nauseous? It basically feels like food poisoning? I would love to pick your brain a bit for some tips…I’ve not yet come across anyone who has such a similar sensitivity to fibre foods. Anyway thank you for the post. Xx
Hi Stefanie. I have had a proctocolectomy with permanent ileostomy for nearly 5 months now and have similat issues as you. I have joined anOstomates facebook page and it is a great resoure. Basically I have found out that quinoa is indigestable and I have personally had issues with corn cous cous. I am also gluten intolerant and diabetic so my diet is limited but better than pre-op.
I had Ulcerative colitis for 26 years pre-ileostomy and have since re-introduced a lot of food that I could not eat before.. I basically have a low fibre diet with the odd salad and cooked green vegies. Thanks for the post and good luck with the diet.x
Hi Kellie my husband just got his colostomy, doctor just told him that he can start having sips with coffee or juice, what juices is easy on him right now?
Hi. Anything clear. Nothing like prune juice or anything like a nectar. Hope that helps.
Hello, my husband has just been given a stoma bag (he is still in hospital). I am very nervous about what food he can and cant eat, I feel I am having to hunt for any information and then its conflicting? for example, no fruit or vegetables for 3/6 months and then I am told to bring in tinned fruit? I feel totally confused and worried that I get it wrong, To add to the problems my husband is a very fussy eater – many foods he simply cant eat – strictly a meat and two veg man! I would appreciate any help at all. I have your blog very helpful. thank you
I am afraid I can’t – by law – give individual advice but I do hope you find the low-fibre pages helpful. Three – 6 months does sound quite a long time so I would double check this with the doctor as much of how to proceed with food is down to individual reactions. People vary greatly in when, what and how much they can introduce. We recommend one new thing at a time and keeping a food diary to track the successful and the not-so-successful. Do get clarification from your treatment team as to how rigid one must be with adding produce
I just had an ileostomy on Jan 17! I am a private woman and this has tore my world upside down an I am an emotional basket case. I cant seem to get my bowels to straighten out. I have had a horrible time.
I know it doesn’t seem likely right now, but it will all settle down. Gradually. The vast majority of people eventually find that although it has been an invasive & unpleasant event, once it all settles in that they feel much better and can enjoy food once again. All best wishes, Kellie
I had mine on Dec. 27, 2012. I am the same way still. No help from doctors. Wish to you luck and prayers.
I know the fealing had my opp done 8 weeks ago wish you all the best
Just hang in there, I had a terrible time at the beginning too. Be good to yourself it is a huge adjustment. I am a very private person too. I have had my ileostomy since 2006. We are friends now, it took awhile. Don’t underestimate the power of prayer. I will send one up for you tonight.
Hi i read that you have had an illeostomy for several years. My mom has had one for one year and she cant seem to gain weight. Would you be able to offer ideas on how she can gain weight, please?
Thanks so much!
No, I haven’t had an ileostomy. Perhaps there was a commenter named Kellie? As for weight gain, advice is dependant on what she is able to digest. The general advice is to add healthy fats like olive oil, smooth nut butters, avocado and things like homemade smoothies. The extra oil can be added after cooking if the meal is a family one. I have a page for weight gain in my cancer and nutrition section. But it isn’t specific to those with ileostomies.
I had a colostomy six and a half years ago. I was of course warned to take things slowly and see how various foods etc., affect me. I have had absolutely no problems at all (except occasional but infrequent gas production!) and I hope that others can draw strength from my comments. Think positively, be sensible and try to carry on with your life as normally as possible. It has certainly worked for me.
That’s great news, Gordon. So many *newbies* are naturally concerned that things will never be normal for them, but your words happily prove otherwise. All best to you and thanks for commenting.
hi kelly, im 3weeks post ileostomy (loop) which is a temporary one, i would like to say that for me its been like a miracle . the pain i was in for months beforehand was absolute agony, and the day after my op iv,e had none of the pain i had before it . some post op pain but thats been a doddle to what i suffered before. iv been eating pretty much what i like since the day after the op, but salad stuff im testing out in very small amounts at a time to see how i react, so far so good. it is so great to be able to eat again and not be in pain each time, i missed being able to eat well and im making up for it now.my stoma (hetty)is my best friend as she has given me the will to live back. i was so depressed and ill and in such pain before, now i feel like a new woman. so please anyone try not to be upset if you need this op, ok its not the most pleasant thing in the world to have but it really could change your life for the better.best wises to fellow ileostomyist.xx
I’m so glad you wrote in and shared your own experience. No doubt you will reassure someone going through those very initial decisions. Keep well 🙂
Hetty. 🙂 I have temp (hopegully) ileostomy loop named princess loulou lol. Some days I struggle. Had op 5 months ago and still to nervous to try most veg. Skins. Nuts etc 🙁
I had my illestomy on November 24, 2012 at the Cleveland Clinic in Ohio, but I live in NJ. I had a loop illistomy and since I had it I had to be hospitlaized twice due to severe pain in my stomach. Every day I have pain and I am extremely tired. I also have nausea but the worse part is the pain in my stomach and I only have about a day once a week when I feel good , is this normal?
Everyone’s normal is different but I do think your pain and nausea should be investigated. An ileostomy should be making your life better. Best wishes, Kellie
I know how your mom feels, I don’t like my osteomyelitis either
No .. Does not seem normal. I would call the Dr. right away. You are supposed to be feeling much better
Please keep me posted..
I’m pretty much the same and have my ileostomy 8 years I do have diseased bowel though and had a huge abscess internal down the side of my stoma so be careful and have it investigated I still have abscess that appear on the edge of my stomach plate as due to the nature of this problem I can opt for an operation and have my stomach delighted but because of a lot of other surgery I risk ending up with small bowel syndrome so I’ve been suffering abscess now since 2016 I’ve had 6 I don’t get hospitalised every time I try and deal with them at home not easy but I’m terrified of the risk of surgery …so just get investigated you may need an antibiotic…I can’t take fibre at all I’m so limited with my diet but I love food so I manage I’m thankfully I can still enjoy eating short bowel syndrome would not be so pleasant ..
I also have an ileostomy and have had a couple of small bowel obstructions. These obstructions were preceded with stomach pain and nausea. I would suggest a call to your surgeon and talk to him or her. An ileostomy is supposed to make your life easier. Please be an advocate for yourself, if you are thinking something isn’t right, than it probably isn’t. Will pray for you, it’s a scary time, but it will pass.
Good luck! Barb
Thanks for your very good comment! I’m sure it’ll be much appreciated. And yes I hope they get sorted right away. All best, Kellie
9 months post surgery for a ruptured bowel and colostomy and thinking about reconstructive surgery.. it is scarry as I do not know what to expect. Will my eating habits need to change after reconstruction?
Initially yes, but many people eventually are able to eat most/all of what they like, and what keeps them well. Response to bowel surgery is hugely individual that it makes it difficult to generalise. Your treatment team will be best placed to give best advice. Low fibre initially is often useful as it helps the bowel rest a bit, and to heal. Hope this helps.
To Janice. I had a full irreversible colostomy seven and a half years ago; I have been able to eat perfectly normally and have had no problems at all. I wish you well and all I can say is carry on as if nothing has changed. Best wishes…..Gordon.
Thanks for replying to Janice. I’m sure she will find your comment reassuring.
Had an ileostomy performed on oct 2012. It has been an adjustment to life, but it’s ok.. I have trouble with carrots & green beans , they seem to be bulky and prevent the normal foods to pass by and go thru.. Kinda stops at the “exit” (stoma) and causes a major leak.. Soooo I have stopped eating that type of veggie.. It is too bulky for my system. I have to remember.. Chew chew chew.
Hi
I had an ileostomy loop op in march. I’m only 38 and have diverlitular disease. Colovestical fistula (connecting hole between
bowel n bladder) u to scared to try most veggies. Nuts etc. But the thing thats getting me down the most is not being able to pick my toddler up 🙁 most of the time my stoma (princess loulou) behaves so I am lucky. But still have lots of pain from other issues which will be operated on in a few months 🙁
I hope your issues are resolved with further surgery. Hopefully in time you will be able to enjoy a wider range of foods and textures. Perhaps have a look at my low fibre pages for ideas of things to try in the meantime. All best, Kellie
My husband has an colostomy five weeks ago and just has no appetite. He said he just eats a little and gets a sick feeling supposed to have a reversed servers l soon but has to gain weight any suggestions
If he can bear to, get some doctor-prescribed supplement drinks and add a tbsp of olive oil or a neutral oil into every meal and drink. Little and often eating, with drinking just after meals (a little water with meals) as it can fill up and leave no room for food. Herbs and warm spices like cinnamon and cardamom may stimulate appetite. Add into rice pudding and into pancake batter, that kind of thing. Add colour to meals, even if just a garnish or parsley. Sometimes people find bitter or astringent foods and condiments (like strong leaves, like kale, rocket / apple cider vinegar) useful as they stimulate gastric secretions and appetite.
Hi, I have had my ileostomy for over 5 years and I had the same problem with gaining weight. Sometimes it’s a jitteriness , or in my case a nervous stomach, I was scared. Some things I did were,
I would leave dry cereal in a dish and pick at it, or crackers it would sort of prepare my stomach for a little something more. Drink and chew well of course, water gets old, so maybe just add a 1/2 of cucumber to a pitcher of water, clean and fresh tasting and cukes are naturally good for you. Most of all be patient with your self, it takes time! Try and get a little exercise just a short little walk outside. It’s a gradual thing and as you put the weight on you will feel stronger and stronger. Also I prayed for strength and I prayed for an appetite! It sounds like you are an awesome wife, a strong support for him! Good luck and I pray for the calories to start coming.
Pia
Thanks for sharing your story. Those are really wise tips for all reading to take onboard. There’s nothing like a positive story and experience to make a real difference to others just starting out with their ileostomies.
Hello I just had a colostomy back at Christmas, I tried eating Chinese about 2 months later and it didn’t go well, I would love to try it again but I am nervous about what will happen again. Should I try it again or leave it out of my diet??
It so depends on what you choose, and the amount eaten. I would try a small amount of something mild and not too oily in the first instance. We also recommend when trying any new thing to document it as to what it was, the amount, general symptoms and health. Many people can go on to eat most anything but it is very trial and error for awhile, and variable from person to person. Good luck!
Hi I have a stoma, and keep getting blockage. I recently had one, I had stomach pain, and felt nausea. I finally felt better after I vomiting several times. What else can I do to avoid blockage? I am under weight( 99 Ibs), and worry about losing too much.
Hi there. If you are following the standard advice and still experiencing blockages then I think you really should see your doctor and check that something isn’t amiss with the stoma itself. It is probably nothing that you are doing wrong. And see about some prescription supplement drinks, if that is appropriate, to add in between frequent, small, calorie-dense meals.
I am waiting to have a bowel resection after having 2 bouts of diverticulitis which has also caused a large cyst on my left ovary. I have been told that I would have an ileostomy but this would be temporary, anything up to 18 months depending on how I heal. I was first told 3 months. The more I think about the operation and the implications of having the surgery the more I am wondering, well to be honest considering not having it. I have a daughter who is starting her gcse exams and a husband who works all hours. So the logistics of work and running the house and making sure everyone is ok is just too much. Then on top of that there is the restricted diet which it appears from what I have read is hard. This will be even harder I think as my operation is due to be in December so Christmas will not be too good. What I find is that no-one really tells you how you will feel after, how long it will take before you can start going back to a ‘normal’ food intake. Can you sleep on the side that your bag is on? I know it mind sound silly but it is things like that no-one tells you. The thought of having an ileostomy is worrying enough and I am finding it all very difficult to take in. Therefore, can you or anyone else give one piece of advice to someone who is just well scared….
I’m sorry that you are having such difficulties. And of course understand how difficult it is to comprehend how an ileostomy might affect you. If you read through some of the comments here you might derive some reassurance on the positive aspects of making that decision. I am not a nurse or doctor and am not au fait with all of the ins and outs of daily life with ileostomy. Perhaps others reading your heart-felt comment and question can offer some advice. There are a number of online support group that will be able to answer some of the fundamental questions you have.
Here are a few links: http://www.colostomyassociation.org.uk
http://www.iasupport.org
http://www.living-with-a-stoma.co.uk/support.html
Best wishes with your decision.
Kellie
I had my colon removed and stayed in the hospital for about 1 week. I got a fistula and had to go to the ER. I had another surgery and also had a infection which I was hospitalized for 1 month. I am left with a ileostomy for life. I do sleep on the side my bag is on but I sleep with a body pillow. I have had some leakage during sleep, I noticed that it leaks through the vent on the pouch or if I get gas and I am sleeping on the side my pouch is on I put pressure on the bag during sleeping it leaks.
Hi Scared!
It is normal to be scared. You have to take care of yourself! All these things are manageable, it just takes time. I know because I lived it and am still. I had a bowel resection for rectal cancer and ended up with a permanent ileostomy. Let me try and answer to a few of your worries. My ileostomy was also supposed to be temporary, it was taken down to early, meaning I had not healed properly. At the time they said that there was not a test or X-ray that could check to see if it was healed, there is now, insist on it and be patient. Your diet and how it works is covered well by Kelli, chew everything well and keep yoursel well hydrated, I try to drink 8 or 9 bottles of water a day., especially more important with a ileostomy . I don’t know about your family, but I had a huge support system in mine, it was also not an ideal time of year for me either, we own a Dairy Queen and this was March, I was looking at taking time off in prime season.
You sound like maybe you could plan a different time for your surgery, maybe before or after the holidays, whatever stresses you less or how bearable are your symptoms. I promise you can do this, because I did it, and I was terrified, the last thing I wanted was an ileostomy. But we have become friends. I had my surgery in 2005, so I have been at it for awhile. Please take care of yourself, take it one day at a time and hang on to God. He is there in the middle of the night when the house is quiet and you are alone with yourself and Scared. I wish you well and I’lle thinking of you and sending some prayers up for you.
Pia
What a wonderfully uplifting reply. Thank you so much for taking the time to read and comment. This will be incredibly helpful and reassuring to many. Best wishes, Kellie
wish I’d never had the surgery. My bowel was perforated in four places. I got sent home from the ER six days without tests or treatment. It was diverticulitis. I’ve stopped eating altogether. The whole thinh makes me so sick
never believed in surgery.
how did surgery go?
hi , I prob had 8 diverticulitis flare ups, 3 needing hospitalisation, my gp was totally against surgery (difficult recovery and possible ostomy but I knew I had to do something .im a single parent of 2 . I had my colon resection jan 15 and I managed to stay in hosp for over a week and all ran smoothly at home!. I have an ileostomy,surgeon didn’t think I would have one but it would have been always a possibility and to be honest I got quite a shock when I was in recovery and discoved it was there. it was a 4hr surgery and consultant is talking about reversal may/june. I am so glad I had this surgery as I would have been in trouble down the road, possibly a perforation or an abcess. . the bag was problematic for me for almost 7 weeks, not from a food point of view but just being sore and uncomfortable. it has finally ok, and getting back to walking and bending easily. take care and its normal to be scared.
Dear Khris
Thank you for your answering my question regarding sleeping on my side. I will certainly be looking into buying a body pillow; it will remind me of when I was pregnant and having to sleep with a pillow in-between my legs. I guess it will be more trial and error at first. Thank you for taking the time in replying.
I sleep with an ostomy wrap which keeps the bag in place when I sleep on my side. So far, no leaks and I sleep better
Dear Pia
I would firstly like to thank you for taking the time to reply to me. I understand that it will be a shock and maybe I am over thinking it too much and will accept it more when it is here, who knows. Sometimes too much thinking is a scary thing.
Regarding the diet, it is such a shame that there is no recipe books out there for people who need to go on a low fibre diet, which is what I have been told I need to do just before and 3-4 weeks after the surgery. This goes against everything I am doing now. Having Diverticular Disease means a High Fibre diet and plently of fluids. I have, since my last stay in hospital this year tried to increase my water intake to 1.5 litres a day.Before that I was only having about 3-4 cups of tea a day. No plain water.
However, the hospital stoma nurse told me that this was not a good idea, having plain water, as it passes right through you and can cause you to have a upset stomach. It was suggested that I would need to drink squash not the ‘low sugar’ variety. Also I need to have salt in my diet. This was the basic talk given to me by the nurse at the hospital. Lasting all of 15 minutes. I was handed a leaflet and a bag, told to read the leaflet and instructions as to how to put it on and told to try it at home as a test to when I have the surgery. This I did, however, within 10 minutes I had received a reaction which I was from the adhesive glue against my skin. When I rang the nurse to mention this I was told that they would have to try and find something for me but could not guarantee that it would be there when I am admitted. This is the NHS (National Health Service) for you in the UK. They also inform me that I will have to inject myself, in the stomach, everyday at home for 24 days. This is apparently to stop myself getting blood clots. They even give you a leaflet to tell you how to do this…. Not good when you have a phobia of needles.
My husband is supportive but I do not want to burden him or my daughter. My parents are elderly and I do not think, to be honest, that they realise how big an operation this is. Therefore I also do not want to burden them with my worries. I know they will all be there for me, but at the end of the day it is I who have to deal with the feelings and the range of different emotions that I expect I will have. To be fair it will not be there fault as they will not really know how I am truly feeling as they are not in the same position. I think the people who truly know are the people like you, the people who have been there and have found the strength and courage in themselves to cope to live with it and to fight. The people who say this will not beat me, it might change me but I am still me..
I think the fear of the unknown is worst the anticipation and waiting the hardest. I guess it is not in my hands, I am not in control and that is something I find hard.
I will take your prayers with the kindness they are offered and I thank you from my heart.
Can I just chip in to say that bowelcanceruk.org is an excellent resource, and that the charity I work with, maggiescentres.org, has an active online community that may be able to help support you and anyone reading this.
Dear scared: I had a colostomy six months ago. Don’t stress too much about the injections. I too have a phobia of needles but if it is love nod they are giving you and it probably is then you will find the needles are very short and really do not hurt at all. After a couple of shots you won’t even notice any inconvenience. Trust me. I was on it until a week ago. I clotted a lot with prior situations so they left me on longer than most. I think you will find that the outcome is much easier to live with than you are thinking it will be. Just trust in whatever faith you believe in and relax. It is out of your control so stress is just harmful and serves no purpose. It will be fine. Prayers to you jm
Auto correct seems to think it knows what I wanted to type so lovenox became love nod and I didn’t notice it. Lol. The shot medicine is probably lovenox. I didn’t see an edit button so commented again to correct it.:)
Dear J.m. Riley, Thank you for your reassurance it is truly appreciated.
It is now getting nearer to December and I am counting down the days to when I get the phone call/letter from the hospital with my date of the operation. At present I am getting over a very heavy cold so I am glad in a way it is not now as I would have felt awful. The doctor thinks it is all the stress of not only waiting but also I have a very stressful job, so basically it has all caught up with me. Thinking about it this was most probably meant to be as I had a horrible sore throat and chesty cough so they may not have operated anyway. Time to reflect and contemplate…
Thank you for talking to me about the injections. I have thought about trying to attempt injecting myself in hospital whilst there are nurses around as I hyperventilate when having any form of injection. They can hopefully reassure me. However, if this is not successful then they have told me that they will arrange for this to be done for me even when I am back at home.
It is like anything it is the anticipation, the waiting around, the feeling of not being in control. I will try and stay positive but I know that there will be days, especially nearer the time that I will have emotional meltdowns but I suppose that is only expected.
Thank you again and I appreciate you taking the time out to reassure me.
Hi I had diverticula disease and ended up with a perforated bowel, peritonitis and blood clots in my left lung and had to undergo emergency surgery to save my life. I am 10 weeks past surgery and have a colostomy which will be reversed later in the year. It takes getting used to and I didn’t eat for 10 days as I felt sick constantly. My appetite picked up once I got home and I have come to terms with my stoma I think this is mostly a mental thing as its a big shock. I am having to inject tinsaparin since the operation up until I see a haemotologist in August. That was scary at first but again I have got my head around it. I have found it amazing what you can cope with when faced with things. Talk to as many people as you can who have had a colostomy as that will help most health authorities have support groups you can join. Hope this helps others.
Hi there,
My Aunt recently had a large portion of her intestine and bowel removed due to a car accident over 30 year’s ago. She was so sick the Catholic Priest had come to the hospital and read her her last right’s as they call it in her religious belief’s. Basically she was very near death. She now is at home miraculously and she has a colostomy bag on 24 hour’s a day. She is always tired, mainly from the breaking of the bag’s and having to empty them so frequently. She never gets a full night’s rest. She and I are both wondering since everything she eats and drink’s goes directly through her including the 3 jug’s of Pedialyte she is required to drink daily, are they any food’s or drink’s that she can consume that would more go into the blood or body rather than just straight through her? Thank you for any advice on this topic!! Becca
Sorry to hear about this. Has she tried eating low-fibre at all? That could ease these distressing symptoms. It isn’t something to do long-term except under doctor’s supervision though. But as everything is going through her so quickly this kind of approach is often worth a shot. I would ask her to seek the approval of her doctor. I have some guidelines on my Help with Low-Fibre page, with links to more about specific foods. Hope this helps.
Hi Kellie! As a newly ‘colostomized’ person, I just wanted to take a moment to thank you [and your other readers] for your helpful/healthful tips. I LOVE good food, but will take your lessons seriously as I maneuver my way through this very interesting change in my life!
Thanks Again, Gail {writing from frigid, but BEAUTIFUL, Sauble Beach, Canada]
Hi Gail. Thank you for your most lovely comment. I am so glad you found my pages useful to you. Best wishes as you get to grips (so to speak!) with your colostomy.
Hello Kellie
I m a newbie with my Colosotomy bag still in the hospital from my surgery. I have always eaten salads and fruits and vegetables. 10 days before my surgery I began the low residue diet for severe Crohn’s disease and was not doing well. My appendix ruptured and I have 3 different type of bacterial infections that formed an abscess on the intestines both small and large. In order to remove it I had to get the proedure and my appendix removed at the same time. In recovery for surgery and they are not sure if I even have Crohn’s. I am not sure what to eat as I am very uncomfortable using the bathroom and now I won’t know when I go. My daughters are trying to force me to eat but I don’t know what to buy for meals that I can fix myself.
hi my name is denise and I going into surgery 01-29-2015 and I already have running bowel so im really confused about what to eat when I come home
Most likely you will be advised to eat a low-fibre and low-residue diet to help the bowel heal after surgery. General guidance and dome food ideas are here, but ask for specific guidelines from your doctor. Best wishes.
Hi, am looking after my father who has a colostemy bag, and has had a couple of blockages in the last couple months. Are weatbix a good breakfast, is yukalt good for him, is chicken soup helpful for blockages, what about dairy products. Basically he worried what to eat all the time he in his 80’s no teeth so slices his food fine before eating any help would be great thanks.
All foods you list should be okay, but treatment team advice supersedes any advice here. Check my ‘Easy To Chew’ page for other ideas.
Hi, I’ve only just found this site so will be checking out the recipe pages shortly! I’m 63, I had changes in bowel habit last year so my GP sent me for a colonoscopy on 22nd Dec 2014, unfortunately the day after I became very ill, was admitted to hospital and had an emergency colectomy and end ileostomy. Over 8 weeks post op I still haven’t had a follow up (it may be 13 weeks apparently). I’ve been chasing the histology reports since 4 weeks post op and have had a letter from the colorectal team (who didn’t do the surgery) telling me there was no sign of cancer or inflammatory bowel disease and that they hope this reassures me. Of course I’m very thankful there is no disease but I just wish someone would tell me what happened! Apparently the colonoscopy results were clear so how come my bowel was gangrenous and abscessed two days later?
Anyway after all that moaning, I do feel suddenly much stronger and am able to do increasingly longer walks (I used to do 5 miles some days). I read Scared’s comments (Nov 2014) about the NHS and while I’m obviously cross about what’s happened to me (I did sign a consent form though covering risks of complications) I spent 10 days in hospital over Christmas and New Year and I cannot fault the treatment I received from anyone. I also have a dedicated Stoma Nurse who visited me every day in hospital and every week at home until this week, she’s now going to come in three weeks time. Any problems I have had she is there at the end of the phone. Once she stops coming I am still able to access her at the hospital if needed. A wonderful service thanks to the NHS.
Food wise I have had my ups and downs, I still can’t eat anything raw and only a tiny amount of things like cooked broccoli. Its mostly mashed potatoes, very well cooked carrots and root vegetables (and I mash them as well!). Also cheese and eggs which make the output niff a bit! I weigh 8st 8lb at 5ft 2, I don’t want to lose any more. My previous diet was mainly fruit, veggies, nuts and seeds so its very very hard at the moment, so much of what I now can’t eat were my favourite foods.
Bag wise it’s been a steep learning curve but I think I’m getting there. Just had a bit of irritation which my Stoma Nurse sorted with a sample of barrier film spray. You can get loads of free samples of all sorts of stuff related to ostomies.
To sum up, you have to remain positive, I had some really bad days in the beginning but I am starting to think that I’m lucky to be alive again even if I didn’t have to have an operation the first place. These things happen. We’re none of us perfect.
Thank you Linda for your very honest thoughts on your own experience, and for your generous reassurances to those – like “Scared” – who are currently worried and fretful about their situation. Wishing the very best health. Thanks for taking the time to comment, and I hope you are able to start eating your favourite foods very soon. Do keep a food diary – they really hope to see things more clearly over time.
A similar thing happened to my mother-in-law, the colonoscopy used too much air pressure and blew out a diverticula which caused a hole in her diaphragm. She was unaware of this until several days later when she suddenly couldn’t breath. She had sepsis and her lung had collapsed. Her surgeon did emergency surgery and she wound up with a temporary colostomy.
Hello there,
I enjoyed reading these comments so I thought that I should add my story.
I had been unwell for around 3 months and eventually had a CT Scan on 22 December. Two days later, on Christmas Eve, a doctor phoned and said that I had cancerous tumours in my bowel and should come into the hospital that day for an emergency operation. I actually had the operation the next day – Christmas Day 2014.
Because it was all so sudden, little had been explained, and I didn’t know anything about Stomas or pouches. Anyway, a large section of bowel was removed and I woke up the next day with an ileostomy. I stayed in hospital for a total of 8 days and then left with the following guidance:
Drink at least 2 litres of fluids a day;
Have a low fibre diet for the first month, avoiding salads, fruit and vegetables, as well as brown bread.
I was okay with that. I actually had a very good appetite, but I couldn’t put on any weight in the first 2 and a half weeks, apparently because the body was using all its resources to adjust to the new situation. So, I was 8 stone 6 pounds when I left hospital, and I was still 8 stone 6 pounds 2 and a half weeks later.
What is my weight now (9 weeks later)? 9 stone 10 pounds, just 4 pounds short of my target.
Initially, I drank lots of milk, choosing whole milk instead of my usual semi-skimmed. After a month, I went back to semi-skimmed.
What do I eat now?
I start off with a large portion of porridge, and I have sardines on toast 2 hours later. For lunch I have 2 slices of thick wholemeal bread along with 2 eggs, or 4 fish fingers, or I make cheese toasties. I also have a portion of grapes, and I have a half of a banana in mid-afternoon.
Around 5pm, I have my pre-tea. I cook 30 grams of brown rice, or a portion of carrot, and I add this to 2/3 of a tin of vegetable soup. Souperb!
Around 7pm, I have my main meal. I usually have fish, or chicken pie, or chicken kiev, or sosmix, along with mashed potatoes, or rice, or pasta, as well as beans, or peas, or butter beans, or sweetcorn.
I chew all my food well and I have had no problems with the stoma.
I also have 2 bottles of Ensure Juce every day. They are high energy drinks and they are available on prescription, and come in many different flavours. I prefer strawberry and peach, which the chemist is happy to supply. My doctor has given me a prescription for these drinks for the last 4 months. I am now on my last prescription because I have almost reached my target weight.
I started going out for short walks about 10 days after I came home from hospital. As long as the weather isn’t too bad, I go out for a brisk 2 mile walk every day.
The main problem that I have encountered is pouch leaks. I almost had a leak a day for the first 2 weeks. I had to learn how to avoid the leaks. I change the pouch first thing in the morning, before the stoma becomes active; I take my time when attaching a new pouch, making sure that there are no creases in the adhesive; I check the pouch 2 or 3 times in the next hour or so, making sure that everything is in order; I empty the pouch regularly; I check the pouch every time that it is emptied; when I am sitting, I check that the stoma output is able to pass down to the bottom of the pouch, that it is not restricted by my trousers belt, for example.
Following those first 2 weeks, I only had 3 leaks in the next 6 weeks.
I have had no leaks in the last month. Hooray! This builds confidence and makes you feel that you can go out into the world.
I feel great!
Good luck,
Billy – age 61
From Glasgow, Scotland
Thanks so very much for this fantastic account of your experience. I am sure loads of ‘newbies’ will find it both comforting and very useful. All best wishes, Kellie
Hello there,
It’s me again.
I just wanted to add that I have started eating nuts again – walnuts and brazil nuts so far.
I am very aware of the danger of nut obstruction, and have therefore been very careful about my method of eating.
I start by placing the nuts in a cup of water to soften them slightly.
I never put a whole nut in my mouth, because that is too risky.
I hold one nut in my hand and bite off a very small section, which I chew thoroughly. I continue biting off small sections until the nut is gone.
It probably takes about 5 minutes to eat each nut. I do it while watching TV.
Best wishes,
Billy
Great stuff, Billy. That’s mindful eating put into practice. Something we should all be doing.
we are having problems with the bags leaking on the sides.we have checked the seal all around the colostomy bag.we have tried different brands.we don’tknow what the problem is.
Hello Linda,
There are 2 main things that need to be checked:
Make sure that the flange opening is exactly the size that you need. In the early days especially, the stoma shrinks quite a lot, so the flange opening has to be adjusted regularly.
Make sure that the pouch is perfectly positioned.
I try to be very careful every time and I still get the occasional leak, so I know how difficult this can be.
Best wishes,
Billy
Thanks Billy. You are a star. 🙂
Hi Linda 🙂 I used to have the same problem until I started using a soft convex bag and “elastic tape” by brava coloplast.. They are semi circular tapes that go over the flange to extend the sides and provide more support & durability I swear by them. I also use barrier film wipes before applying my bag x
I have been operated for cancer of Rectom & I have been on Ileostomy bag for the last 5 years. Gradually I am having hernia effect at the stomy part . I am wearing a waist belt with hole at stomy portion. Should I get it operated .Doctor doesnot advice . What is your suggestions.
I’m not a doctor nor have I been the recipient of a stoma so I cannot offer advice. Everyone is am individual but do have a read of some of the comments above yours. Many people have written in with wise words. All best to you. Kellie
My husband had an ileostomy in Feb last year following peritonitis while he had leukaemia. He coped well with the stoma, eating everything with no problems.
Thankfully his leukaemia is in complete remission so on Feb 23rd he had a reversal. He has no colon so had his small intestine joined directly to the rectum. He had a dreadful time as his bowel refused to start working again and he had to stay in hospital for 6 1/2 weeks before it restarted. We’ve been told to stick to aa low fibre diet but he has had finely chopped onions in lasagne, without ill effect. Do you think he would cope with finely chopped mushrooms, or are they definitely forbidden?
Hi Lynn. I’m afraid I’m not legally able to offer specific advice. Best ask your husbands treatment team for advice on specific foods. What I would say is that unless there is risk of a blockage what one eats is a matter of trial and error – is it comfortable to digest, is output affected? Mushrooms are a blockage risk rather than anything else for the most part. Ask if you can blend mushrooms in the first instance. Hope this helps. Best wishes.
Hi I am Brian, 67. I was diagnosed with bowel cancer last june, 2014 and had an ileostomy in August. I got lots of post operative infections, and was on the operating table for over 11 hours. Mainly due to obesity. I had a few months of adjusting but determined I was going to be better than I was before, fitness wise. Having a stoma is a shock at first but I am used to it now and bag changing, skin care is just a daily routine. I have lost 56 Lbs and go to the gym as often as I can.
I am healthier and eat better than when I was in my thirtees. I may have a reversal, I may decide not too. I feel and look pretty good most days, why jeopardise things, lifes pretty dammed good, I even race my 8 yesr old grandaughter when I take her to school. What I would say to anyone who is going to have surgery due to cancer is, have a positive attitude and look forward to the potential of a long and happy life. Good luck all. Brian
Thanks so much Brian for this personal and very positive comment. You will be giving anyone reading this a bit of hope and comfort. Best wishes, and continued good health. Kellie
I was diagnosed with Rectal cancer in November. I had 28 chemo and radiation treatments to reduce the tumor size then had surgery 3 weeks ago at the Mayo clinic. The tumor was smaller that anticipated, the surgery was successful in removing the cancerous tissue and I have a temporary ileostomy. After 4 months of additional chemo and assuming no problems along the way, I will get “hooked back up”. What should be the normal daily output from my stoma? I have read everything from 500cc to 1200cc. Just out of the hospital is was draining my bag approx 6 times a day, now I’m at 8-10 times a day for about 1000cc. The consistancy is very thin sometimes to thick at other times during the day. Is this normal? I eat 5-6 small meals with Bananas, applesauce, breads, cheese, etc., all the “thickening” foods which work at times but I think my output is too high. I’m considering using some Imodium but I don’t like taking any meds unless I have to. Is it OK to take Imodium every day to reduce output? Is high output OK if i’m not loosing weight or becoming dehydrated? Am I expecting too much too soon after my surgery? I’m thirsty at times and concerned about dehydration? I had a large glass of iced tea with dinner tonight and I put 150 cc in my bag about 2:00 am followed by a second bag at 80 cc an hour later. I guess iced tea is a bad idea. Sorry for all the questions but I trying to get this all figured out. You’re input would be helpful. Thanks. Jim
I would say it’s early days and that you are in fact doing rather well! But I will ask that others who have gone through it themselves to please comment. Also, check through this list of comments for reassurance and good advice from those who’ve been there themselves. All best, Kellie
Hello Jim,
I had my operation just over 4 months ago, on Christmas Day 2014. It was an emergency operation for bowel cancer.
I’ll reply to a few of your questions from my experience.
I’m consuming about 2,500 calories a day, and I probably drain my bag more than you. Considering the amount that I eat, I’m really not surprised by this output.
The consistency is completely dependent on the food that I have eaten. Sometimes it’s thin, sometimes it’s thick. Depending on what I have eaten, I know what to expect 2-4 hours later.
I don’t think that you need the Imodium, but you should check with your stoma nurse if you have one.
You say that you’re thirsty and concerned about dehydration. Hospital guidance states that we should be drinking at least 2 litres of water/fluid every day. I make sure that I drink 9 or 10 glasses of water every day.
I empty my bag 2 or 3 times every night. Since I only sleep on my left hand side, because of the stoma, it gives my side a short break.
Good luck,
Billy Nicol
Have my 2nd ileostomy. I am very impressed with your information. Please try to tell readers amounts to eat also. 1/2 banana, 1/2 cup cream of wheat, a very small bowl of greens, and water, water, water after the meal. Eat a larger amount during the day and less in the evening. Before bed, eat 2 or 3 marshmallows to restrict watery output at night.
Hello
I had an ileostomy 3 years this past February. It has been a long haul and a life changer for me. I have been reading a lot of the remarks about people having trouble gaining weight. I on the other hand have difficulty losing weight. I had ulcerative colitis and was on prednisone for a long of period of time and unfortunately couldn’t get back into remission and of course was a little over weight before my surgery.
I was such a healthy eater before my surgery. Very little bread. I loved my vegetables and fruit but am now on a low fibre diet so that leaves a diet with lots of carbs. I am still however having problems with cramping and the runs and have been missing at least 3 or 4 days of work every six weeks or so. It is getting really annoying. I am not sure whether gluten could be my problem now. Everytime I see a dietician its something else.
Does anyone have any suggestions.
I remember posting here two years ago about fish and balancing O3:O6 intake. At that time I’d just gotten a colostomy so I was still healthy & strong. I soon discovered that I could no longer eat without crippling / excruciating bloating, so I’ve been half-starving on a liquid diet ever since. Today I’m a bombed-out skeleton and my entire life revolves around ostomy pain. I really appreciate Kelly posting a guide on healthy eating with an ostomy, but for some people this life-ruining surgery makes it all moot. If you can still eat and your ostomy isn’t torturing you, then you can definitely benefit from the healthy recipes on this site.
Maybe tagament would help with gas. Has anyone put you on a gas/reflux pill. You don’t have thrush or white spots on your tongue do you. If you have had it with chemo, it may be in your belly? A fluconazol pill could help.
I had my surgery (iliestomy 3 years ago and am still having problems eating healthy. I Was a healhy eater prior to the surgery. I have seen several dietician. The last one had me go on a low fibre diet which made sense and it did help but then most of what I was eating was carbs, breads, pasta’s and such. Now I am going to try gluten free. It is very time consuming to try and find foods that are gluten free but I have had some minor success. Has anyone else with a permanent iliestomy had any success going gluten free and do you have some tip.
I would appreciate any help you can provide.
Thanks
Deb
Excellent post. I’m going through many of these issues as well..|
Hi, I have my temp ileostomy ( Jack is what I call it) since Feb 18,2015. My output is normally watery to watery applesauce. I went it at 145 pounds and now weigh 116 (normly between 125 -130) my problem is getting winded doing nothing and losing weight, and feeling tired. ( I have two more Chemo treatments to go!!! Getting chemo mouth during chemo and up to 5(6) really makes it hard to because everything tastes slimy, including water. I do drink ensure or Boost in the middle of the night and early am. I do eat small meals and have to take Imodium if I have watery output a lot. Do you have any suggetions to stay at a steady weight?? Thanks!!
Hello Jennette,
So, how do you put on weight?
Well, in my experience, you have to eat more than you did before Jack arrived, as you’re now eating for 2.
I had my emergency bowel cancer operation on Christmas Day 2014.
My perfect weight before the operation was just about 10 stone. I’m 61, 5 foot 10 and with a slim build.
I was 8 stone and 6 pounds when I returned home after the operation. I’m now 9 stone 11 pounds, just about perfect.
I have to eat much more than I used to eat to maintain my weight.
According to a couple of Internet sites, I should be consuming about 2,250 calories a day, given my age, height and lifestyle.
In actual fact, I was consuming over 3,000 calories a day to put on about a pound a week.
I now consume about 2,650 calories a day to maintain my weight.
I’m also very diet conscious, so I only eat quality, and certainly lots of fruit and vegetables.
So, remember, you’re also eating for Jack.
Best wishes,
Billy
I am very happy to have found this site. My search string was “can a stoma patient eat pork and beans”. The answer seems to be maybe, but only in your own home. 🙂 It’s just a craving thing, had the same problem with pecans back when they were bearing. Turns out yes I can eat nuts slowly, slowly and ground to mouth mush. But hey it handled the craving. It’s been a year come Bastille days since I’ve had the surgery, the tomatoes were going crazy would fruit at this time. That’s my next craving, tomato and mayo sandwich. Wish me luck.
Thanks for the site.
Good luck with the tomatoes. 🙂 And thank you for the kind words.
Hello,
I would check w/ the Dr., just because of the 61/2 hosp. stay. Mushrooms still make me nervous an I have had an ileostomy since 2005. Just call the office and ask the nurse to check, that way no worries. Good Luck, Pia
Would ecto coated Peppermint oil be something that might alleviate blockages? Or would you not recommend it for someone with a colostomy? My friend has had random blockages and has not been able to identify why this is happening. The Dr. Don’t have any different suggestions or solutions other than chew your food better and stay away from foods that don’t agree with you. When asked about Essential Oils he just says he’s not a snake Dr. I have had luck with EO but know they are very potent and do not want to cause any more problems for my friend. If you have any knowledge or links you can point me to I would greatly appreciate it.
I’m afraid this isn’t a product I am familiar with. I don’t think it is available here in the UK. Although I think the doctor sounds a bit “sniffy” about complementary medicine, I think I would go along with the thought that a straight essential oil like peppermint is too strong for someone with a colostomy. But I don’t know about ecto coated. Sorry not to be more positive about your suggestion. You sound like a very good and supportive friend.
Hi Cindy, you should tell your Dr. to climb into thr 21st century!! I have an ileostomy and rub Peppermint oil on the outside of my belly when it just hurts or I have a stomach ache. Essential oils are 100% natural. If your friend has trouble w/ obstructions she might try mini meals and of course chew, chew, chew and drin, drink, drink. I hope this helps.. We do have our cross to bear, but things could always be worse. Good Luck.
Prayers to you!
Pia
Thanks for the reply. I use Peppermint oil for stomach upset or a shot of mustard if I don’t have the oil with me. Lol
I thought maybe taking the Peppermint oil internally might calm her bowl spasms as the Dr thinks they are getting kinked just randomly with a bad spasm.
I had colon resection in November 2015 with an unplanned loop illeostomywhich was reversed mid January 2016 … after 3 1/2 weeks my surgeon released me and told me to go eat anything I wanted … no guidance … start with lettuce “because it is mostly water” … sounded great but after digesting his suggestion I tried reading online and realized this just didn’t sound right … he said to increase my fiber to bulk up the stool .. I had constipation and soft thin movements which I was afraid meant a stricture but he said as long as I was pooping … not vomiting … and not in pain not to worry about it … I ended up calling his nurse to see if there might be a printout for some guidance on eating … she said there was none but to be careful eating beef, spinach and salad … so I I eventually found a good print out from Cleveland Clinic and followed that for well over 6 weeks … very cautiously adding back a few foods … however about 10-11 weeks out I felt I was doing good … not perfectly but pretty good at managing food, fiber and BMs and water intake … so I decided to try eating raw carrots … I had them for lunch one day … 3 oz baby carrots = 2 grams of fiber … did ok … no problem … did the same the next day for lunch and evening snack (trying to have healthy snack with fiber) … that got me in trouble as I developed a partial blockage … small bowel twisted … after 5 hrs. of moderate pain I thru up the undigested carrots just as if I had just chewed them and spit them out … 2 hrs later I went to the ER and ended up with a nasal gastro tube and nothing to eat or drink … only some ice chips … about 24 hrs or so later the bowel unkinked … I searched online about carrots and blockages and found out that they are a problem … no one gave me a list of foods to avoid but I have since found one online from Canada … says to avoid all those foods that they told us to avoid when I had the ileostomy ??? I so don’t know how to eat after the reversal … I am 4 months post reversal … feel like I am walking thru a mine field … do I avoid all those foods forever? How do you have a social life when diet is so limited? I saw my Gastro and he told me to follow that Canadian print out … I am discouraged and feel stuck at home …covered dish dinners to me are just too dangerous … you never know what dish may have onions or celery or peppers cooked in them …and after all these months of ordering baked chicken and potatoes at the restaurants I just feel like why bother … I eat pretty much the same things day in and dayout … and please don’t tell me to take my own food to covered dish dinner … I am 63 yrs old and so want a break from having to cook sometimes … my husband and I can’t even go to the senior adult acticities at church because it all revolves around food … food I can’t have … feel so isolated … am I doomed to baked chicken, potatoes and green beans forever? Needing some hope and encouragement …
Hi Pia, I have actually created a lifestyle book called Health the Way Nature Intended – Living and eating well with an ostomy. It was a reaction to the lack of direction and recipes that we could find out there. No fibre meant no fresh fruits and vegetables which were key to a healthy body and recovering. I am a deep believer in consuming green juice- which removes a lot of the fibre – all of it if it is cold pressed. Also doing thing to slow down output like health marshmallows, pectin from homemade applesauce and bananas in receipts too. For protein some have trouble with fish or chicken so we actually soak nuts and then blend them until they are smooth and creamy and make everything from curries to chocolate mousse with them! Anyways, love what you are doing and the inspiration you are giving people.
You are gonna get sooo much better. My strongest advice to you is to see a nutritionist, they are trained in that field and you won’t feel so alone. You may have to get a Drs order to see the Nutritionist, when you call for an appt. tell them your problems so that if there are more than one Nutritionist they can find a good fit.
Don’t be discouraged, it will all work out. Take good care and God bless you!
Pia
Those are wonderful encouraging words, Pia. Thanks for advising Barb.
Hi my partner had a stoma bag fitted 4 years ago , struggles with stamina. Do you know of any foods that would help him.Thank you
Juices may help as might increasing protein if this seems low. Also, ask his doctor for advice about a multivitamin I’m sorry but im not able to offer bespoke advice.
Hi my name is Christine, I was first ill 1yr and 8 mouths ago, I was told I had a/c and cronhs I was then given different treatments which also included steriods but nothimg worked for me. I was offered a op and was in 2 days later that was last oct, op went well but in next few months I had a lot of infections but I have come out the other side amd now waiting for next op. Im now starting to eat different foods and also back at work. I am 65 yrs old and looking forward to the future . I hope my story help others and o also have a stoma good luck everyone
I have had a colostomy for three years now after bowel cancer,I eat a varied diet but have cut out onions because of the gas problems.I have had two episodes of very painful blockage which I needed to go to out patients to get the pain diagnosed which was bad constipation .Has anyone else had this problem and if zo how do you prevent it from happening again.To encourage new colostomy people it does become easier as time passes. Cheers Jenny
My brother had a ileostomy reversal to a small section of sigmoid colon about 1 year after colon resection for colon cancer. I am having a hard time finding much information on diet for this situation. Thanks for all of your great recipes! I love them!
Had a loop ileostomy three weeks ago to bypass large colon after removal of lower bowel (got all the cancer!). Managing stoma ok but contents are usually watery with the occasional porridgy consistency. Eating most foods at family meals in small portions and reminding myself to chew well. Have avoided the ‘forbidden’ things like mushrooms, high fibre greens and nuts or anything with skins. Feeling much better since recovering from operation and went to my first social evening last night (no alcohol yet though). If you take care and don’t rush things, I think the inconveniences are better than dying! Embace the positives.
Great advice Bruce. It is so tempting to just want to get back to normal right away but it always pays to take it slow and keep the fibre low for the first phase of recovery. And indeed, embrace the positives. Thanks for your uplifting words for this comment thread and it’s followers. 😊
I’ve just been reading a number of comments from those with colostomies and ileostomies..my mom has had an ileostomy for over 40 yrs and eats a normal diet except for skins ,nuts and grapefruit. However..it would appear that no-one on this blog is aware of the Ileostomy Association. We have one here in UK.. but not sure if you have this in USA..they are experts and can offer much advise, guidance and support for new and established ostomists.. its worth checking out for a local or nearby branch.
My husband has just had his ileostomie reversed after 18 months. It’s been just over a week and although I have printed off a list of foods he can and can’t eat I would love some recipes to make for him to make his bland diet a little more exciting. He’s not really fussy when it comes to food and loves his meat and three veg. Any suggestions would be appreciated. Thank you all.
Hi Jasmine. Thanks for your queation. My low fiber recipe page and soft food diet page may help. 😊
Is it OK top eat pureed pulses, lentils etc
Hi, Helen. Lentils and beans are a bit trial and error but are so nutritious that they are worth trying to include in the diet. If you haven’t had them in awhile (which of course is likely) just try a tablespoon of them and see how it is for you, whether they produce pain and wind. If it’s okay *gradually* work up to a full portion – about 80 grams. The key is gradual. When you decide to add the lentils make sure the rest of the diet is all foods you can handle already so you will be able to tell for sue if the lentils are okay. Good luck! Oh, here is a good link that I wasn’t aware of before http://pouch.iasupport.org/faqs?gclid=CjwKEAjw16HLBRDF9L2UmOCH7U8SJAASVESoMK_pVIdXXpds5eiQVU41Nh5aHaY98L1Z3UdvQLuUxhoC8Nnw_wcB
Hi , I had my surgery nearly two years ago . Giant colon syndrome . Was sick a long time before surgery . Almost died , but survived . My surgeon has been in practice for 30 years , and has never seen a case like mine . No cancer thank God . I have a permanent iliostomy . I can eat anything . I feel better than I have in 25 years . I’m 68 years old and hope to be healthy for a long time . It’s been tough getting used to the ostomy , but with lots of trial and error and help from doctors and ostomy nurses I’m fine . I consult with my medical co. on new products and helpful hints . Answers come quickly from Coloplast and Convatech . They have ostomy nurses on staff 24 hours a day .
Thanks for your insight and positivity. I’m sure others reading this will be heartened and encouraged.
Wonderful site, very glad I found it. I have a Ileostomy, I just have the surgery in early April 2018, due to colon/Rectal Cancer. Thank God I am doing well with treatment and I have 2 more Chemotherapy infusions left, then oral chemo and radiation for 6 weeks, after that I will have the first of 2 surgeries for reversal. I find my ostomy very unpleasant and depressing, I am very mad at myself for feeling like this, as I am getting a second chance at life. I wish the output consistency was more predictable. And I am so embarrassed at times from the odor that is offensive. Also I have a huge problem with intimacy because of the bag. Was just Married last January to the love of my life! And now this! He is amazing with all of this, I just am not! God bless every one. Laura
Hi Laura. Congratulations on marrying the love of your life. And thank you for taking the time to leave your comment. I have seen many people over the 18 years working with people who’ve had a diagnosis of cancer and have had bowel surgeries. For everyone of them it’s a huge adjustment. Some of them are massively grateful. Some of them are resentful and angry. Often feelings veer between the two. It’s perfectly natural to feel grateful for a chance at life but hate the bag. It can be smelly. It can be inhibiting romance-wise. The vast majority of people who need to live with their change do get used to it. In your case, you are still going through so much both physically and mentally that it must be hard to see beyond the present situation. It’s perfectly normal to feel mad, resentful, and guilty for feeling this way. I hope you have someone that you can be completely honest with and who will support you during this time. Perhaps your treatment team can recommend a group or person to speak with. Please don’t feel guilty though. Yours is a very expected and natural reaction . I wish you well. All best, Kellie
I’m just curious But I have a stoma bag and I was just wondering what would happen if I got my tongue pierced and I swallowed it?? Would it affect my bag?
Tbh I have no idea, but would imagine a risk of ending up with an extra piercing you don’t want
Hi, I’m in search for recommandations on vegan nutrition post ostomy. Are there some references ? Thanks a lot. JM B
There are plenty of medical/hospital sites that have good advice, but I would recommend seeing a dietitian to individualise advice to your own needs. Being a vegan shouldn’t be a problem at all, but that would depend on how extensive your surgery has been re how it affects nutrient absorption.
Realistically, it seems difficult to be too mindful of the diet that you need to have to make sure that your colostomy doesn’t trouble you. Scheduling meals is itself a hard process.
Nice article on ileostomy care
Can you recommend a diet for someone who had colon removed, Total colectomy with Ileorectal anastomosis, and does NOT have a stoma. I can do some veg and most tender meats as well as fish. Low residue can be boring.
can I eat cornbread with my colostomy bag.
Sorry for the delay in getting back to you. Yes, most people are able to eat cornbread, so hopefully you can enjoy it as well.