Diet tips after colon removal?

Hello, I haven't been on here for awhile, so I will fill you in on what has been going on with me. Since my diagnosis of Crohn's and UC in 07, I have had several surgeries, colonoscopies, sigmoidoscopies, and medication adjustments, and it got to the point where everything was affecting my job performance. I had to resign from my job of 20 years. On top of everything, I just had surgery done to remove my rectum, colon, and part of my large intestines. With that in mind, I know that my diet needs to be a certain way. Does anyone have any advice or suggestions for me? It would be greatly appreciated.

Hi
I had my rectum removed, my colon, and all my large bowel. I found I could eat anything before, but now I only eat little and often. I don't have a certain diet, I try everything, and if it gives me wind or my stoma is overactive, I don't eat it again. It's just trial and error. So, hope you try everything you love to eat and just see how it goes from there. We can only try.
XXX

Hi, I lost my descending colon through Crohn's around 18 months ago. My diet has to be low fiber, which means I cut out most fruit and veg, as well as anything 'bulky'. It may be trial and error, as some people can tolerate things others can't. I'm also lactose intolerant. It's awful you had to quit your job through your illness. I'm hoping you find things that fill your time that reduce your stress level, as stress can make the symptoms worse.

Hi Rhian! There are a couple of other threads about food: "Foods I miss", "Things that go down good" and others... have a look, if you haven't already.

Didn't your doc, hosp, give you some literature?

2 main 'rules' are to eat small portions and to chew well... till you've got mush in your mouth. Don't let yourself get ravenous -- keep something in your stomach. I carry some water crackers that I chew to mush if my tummy starts to growl.

Absolutely no nuts, popcorn, mushroom, onions (some tolerate them, but those people are in the minority).

Some do bananas well... they're just ok for me... feel very heavy. Canned mandarin slices and canned peaches do best (on top of low-fat cottage cheese - yum)

Watch the veggies... I can only take well-cooked carrots, broccoli, and cauliflower (last 2 give gas big time tho). The days of nice big raw salads or crispy stir-fries are over.

Meat - small well-cooked portions (business card size) chewed well.

I don't do spices well. No fizzy drinks. One serving of low-fat milk (in a latte) is fine.

White bread, pasta, rice are my friends. If I feel cloggy... a meal of soup (tomato or potato with crackers are my favs) or a cup of coffee seems to get it all going again.

Don't know if this happens with others... but if my digestion isn't doing well, I find I have a slight headache and am 'twitchy' - just not feeling right.

This is what is working for me... hope it gives you some ideas.

You can look up "low residue diet" on Google -- good info there.

Beatrice
p.s. I hear you about work/illness and stress. I worked through 25 years of ulcerative colitis and then left a great job at 40 because of it. 15 years later, here I am with an ileostomy. I have so many interests that I'm loving this non-working life. Almost each day I think "I'm so lucky not to have to work - many don't have the option of quitting".

Hi Beatrice, thanks for the info and the threads, I'll look into it. No, I wasn't given that much info by the hospital once I was discharged, though I have found that I'm no more tolerant of foods than when I was in a major flare-up. I do have anorexic tendencies, which is made worse by depression, that is long-term, since I was a teenager... I started my current job two years ago, and I was so happy in myself that I started to eat healthily, but a few months later I was seriously ill with Crohn's, and my diet has been on a downward spiral since then. My husband does not help matters when I know he likes curry, and he knows I can't eat it, but as we go out once a week for a meal, (the only proper meal I eat a week) and most of the time he pleases me by going to places where the food is okay for my tummy, but I am made to feel guilty about 'being selfish', so I feel obliged to go for a curry occasionally, and end up ill not long after for days on end. He tries the same 'guilt trip' with steak... last time I had it over a year ago I ended up in the hospital when it stayed blocked in my bowel for three weeks... so I dig my heels in on that! I try to keep my weight down by only eating a small snack at teatime, but I feel weak and lacking in energy, I am going to try to take a cracker into work when I go back after Easter. I'm scared of getting fat, even though I'm size 10, the tinned peaches are nice and palatable, so may give them a go again too! Thanks again Beatrice, Rhian

Rhian ... I am not a full member so cannot message you, but would love to talk to you - if you can message me I can reply......? Either that or have a look at my profile....
Rach xx

Hi, I am not a full member either, but it would be good to be in touch, Rhian xx

Hey

What I find that suits me is potatoes and bread. And I do advise you to drink lots of fluids.
Just experiment and be creative, your diet doesn't need to be bland because you've got an ostomy.

Tim

shl3610

It took me forever to figure out why most doctors or anyone in the "know" does not say much about the foods we may eat.

It is simply because they don't know. We all react differently to foods. Not only that, as our body tries to do what it can to try and compensate for the different surgeries. How it tolerates foods also changes with time.

Many things that are supposed to be "bad" for me in fact are not. I do fine with apples and nuts. It blows my doctor's mind. I don't do veggies at all, popcorn is out. Peanut butter is in.
Oatmeal the first year was out, now it is in!

The only three hard and fast rules are:
Drink lots of water.
You can't over chew your food. I think that is why I get away with eating nuts.
Small bites, no gulping!
I guess that's 4.

The rest is all up to you. I can't stress enough chewing your food until it is liquid.
Chewing your food well takes a lot of strain off the digestive system.

Rick.....

Rick - you are so right about the water/liquids and chewing! Many of my 'ok' foods react badly if I don't chew until very watery ... case in point, tonight and spaghetti. Had let myself get too hungry and demolished my dinner too fast. Now I'm feeling off and very gassy.

So everyone -- Chew!

The eating nuts blows my mind too - don't know how you manage.

I have lived without a colon or anus for 18 years now, and I eat everything except Brussels sprouts and liver.

Hey Shitbag!

If I may say so, from your photo you look like one tough old bird (big compliment in my books). And if you are eating everything except Brussels and liver -- that proves it! Was it okay for you right from the beginning, or did you start out with things not processing completely but kept at it? Maybe give us some hope?

I guess every digestive system is different, but if I eat something not easily digestible, it is very uncomfortable, takes a long time to void and actually 'hurts' somehow. Plus I'm scared sh*tless of having another blockage.

All the best and have a salad for me!

It is often not what you eat, but the quantity. I have always had trouble with the bulky, hard foods such as nuts and raw vegetables, but can get away with just small amounts. Yes, as said by many others, water, water and more water. We are rather prone to dehydration which can lead to, among other things, kidney stones and you don't want to go there.

Hey, I think you got it. I was never put on any diet after the colostomy, but I did read all the books. I scared myself, and after my third trip back to the doctor, he said, "You can eat anything you want. It won't bother you." I do eat anything, including popcorn, peanuts, salads with tons of blue cheese, and any veggie I want. I don't have to get up at night and change my bag or have an alarm like some have said. I don't have leaks, and then I think, "Is something wrong with me?" I read all this stuff you all are having, and I am not. I'm grateful I can eat what I want because I love the crud out of boiled peanuts. Plus, I snack on popcorn, and I would never go to the movies if I had to smell it and couldn't buy it. I have never had a sick day like you guys talk about. I hope I am okay. I feel good. Well, thanks for sharing the info as I am just trying to figure it all out. Jenny

Hi dear Jenny!

Ok, you are blowing my mind here. Not only do you eat whatever you like, but you also don't have to set an alarm for the night??? With my ileo, I have to empty every 3 hours at the max.

Do you get up at night to empty at all?

I know we're all different... but boy, would I love a crispy salad about now! Glad you are one of the lucky ones, diet-wise.

All the best.

Hey Beatrice, no I don't set an alarm but I also am not a big sleeper, but it has nothing to do with my pouch. I have mornings that I change it and then I might change it once more before the day is over. But an alarm would drive me nuts as I thank God for any sleep I get. I don't know if I would call myself lucky because I have gained some weight, plus it hurts bad to have fat sucked out, they make it liquid first and then suck it out by the liters. When it is over it really feels like someone poured gas on you and lit a darn match. I never was that close to being on fire in my whole darn life. The Demerol pain pills were so mild that they weren't even worth taking, nothing helped. I am going to probably have to do this for the third time in my life after this last surgery. I do love my salads and my nuts and any food right now, but I am being totally lazy and it is not like me. I don't want a hernia after you all said how easy one would be to get, so I had to study that. So far so good, I am grateful that I am not on a diet or I would have gained more weight, only cause if someone says I can't do something then I really want to do it even more. I am as bad as a child sometimes. I am so sorry that you have to go through all of that but I promise if the Lord let me lie down and fall asleep then nothing is going to wake me up until I am awake on my own. I have a bad sleeping disorder and had it all my life. I love sleep when I get it and I know this has to be hard on anyone who has to get up to empty a pouch. As for a salad I have no idea why you all can't have them. I really think there is something different with a colostomy, I never have stomach pain either. I feel guilty I can eat and some of you all can't, I think if I couldn't I would just live on yogurt whips, I love the Key Lime ones. I think I could live on yogurt and cereal and taters. I would find something, I would just miss everything else. Take care of yourself and I couldn't feel any worse, Jenny

Beatrice,

Every three hours sounds a little excessive. The need for me to empty during the night depends on how much I have eaten before going to bed. If it has been a good three hours since eating last, I generally do not have to empty during the night. How long have you had your ileostomy?

JG,

There is a very big difference between a colostomy and ileostomy. The term colostomy is generally applied to the removal of any part of the colon and the subsequent externalization of a stoma. In other words, you can have a small part of the colon (last major part of the tube) removed, called a subtotal colectomy or the whole thing. If the whole thing (or practically the whole thing) is removed then you are left with the small intestine intact and the last part of it, the ileum, is externalized via a stoma. This is now an ileostomy. People with the colostomy thus have a longer tube which allows for greater absorption of digested nutrients and consolidation of fecal material. As a matter of fact, some people have enough colon left whereby they actually can be regulated and know when they will be passing material in advance. The ileostomate, on the other hand, has a very liquid stool because much of the water has not been absorbed by the time the material reaches the ending stoma. Therefore, anything that we eat as an ileostomate will affect how quickly the food passes through the ileum and thus how much water we can absorb. Bulky foods such as nuts will enhance the movement and they are not digested. As they pass, they, in essence, pull the water out with them. This not only accounts for us having to empty often but also making sure we eat the right foods at the right time. We are also very prone to water loss and electrolyte imbalance. Over time, the ileum does absorb more water so the stool becomes a little firmer, but never even close to what it was. I think this explains why you have far less trouble managing your colostomy and are able to eat the foods that you do.

New York, thank you. It's been a lot of years since I went to school and studied any of this. I have so much going on now with November and the election coming up, plus my surgery is not far off now. I know the two are different, just had no idea that someone would have to empty the bag so many times. I feel bad that this is taking up so much of Beatrice's whole life. I am glad she is alive and well and she is always here to answer questions, a real nice person. I just have a hard time when anyone is suffering. I hear some on here are glad they have a pouch as it saved their lives, plus we have the bikerboy who flies through the highways and streets unashamed of his pouch and so proud to be on those streets and alive. I have heard stories from sad to extremely happy on this wonderful website and I have been so blessed to meet some of the kindest people on here. Swiffer is another one who doesn't take defeat, he says no swimming right now, but then he is an optimist and says they always have something to do. I read Montana's story about what happened to her in a store and being made to show her pouch. Man, I do not have enough Xanax or Valium to calm me down if that happened to me. I have been sending others to the store for me now. I do go to the park sometimes and to the doctor and I even quit going to church and that is really not like me. But I am also very scared something could go wrong and I couldn't handle it and would break down. I am not that strong now or ever. Some people think I am, but that is so far from the truth, I hide in my house and my safety zone for my protection because I can. I only let my personal friends call and they can't come over and I made that real clear. My family are three males and they love me so much it doesn't matter to them what is on my body. But it has been hard for me just knowing this happened. I don't think I am better than anyone else and I know I am not as good as most, but with this bag or pouch I have no confidence in myself. If I would have been sick and told about this it would have been different and I would have chosen life and felt more like bikerboy and swiffer and even Montana and others. New York, thank you again for explaining this in a way that made it easy for me, cause this has been a really bad year for me. Not complaining, just a tough one and thank God I do have family and friends that understand and love me for who I am. God bless you, New York. Love, Jenny.

JG,

Just give it some time, you'll see.

Had my ileo since Dec 09. Things seem to pass fast for me. Sometimes during the night, I'll just get up once (hit the sack about 11:30 and up at 3:30 am or so. That's the longest I like to go ... the bag is just too full otherwise. Usually it's 3am and 6am.

I have to drink a lot of fluid to feel 'good' ... which I'm sure contributes to the bag volume.

My stool has been more liquid than toothpaste-y right from the get-go. Had my checkups, etc. ... it's just the way it works for me now. Anyways, sleep is highly overrated ... not!

Big hugs to you Jenny! Wish I could give you a bit of my 'confidence'. Don't know if that's really what it is. Sometimes I'm down ... but most of the time, heck - I just want to get on with things!

I've been in a swimsuit, slim fitting tops and pants. Ok, sometimes the darned thing does fill and shows ... so I go empty it and it's flat again. Sometimes there's a sound - so what I say! We're lucky to have ostomies now rather than in the past. The products are really so good now -- there isn't any smell under most circumstances. I probably had more odor when I was constantly dirtying my pants with UC!

Have always known that we are so much more than what is shown on the outside. So much more than the body we are given.

Try to think that way and don't be a hermit. Who knows how long we have on this earth. So much to enjoy. Yes, so much pain too ... that's what makes the good things as good as they are.

Take care,

I'm feeling pretty darned lucky after reading this thread. I was diagnosed with Crohn's about 16 years ago. Had a colostomy about 6 years ago and have experienced horrific problems due to fistulas and various skin problems. Last year, on March 13th, I died. My colon burst and I was septic. Fortunately (or not) I was already in the hospital when it happened so they were able to save me (obviously!). At that point I had my colon removed and an ileostomy done.

Prior to my ileostomy, I couldn't eat ANY of my favorite foods. For about 15 years I was on an extremely strict diet of mushy food and nothing fresh. No fresh vegetables, fruit, bacon cheeseburgers, steak, salad, watermelon.... etc. After my ileostomy/colon removal I can eat pretty much anything I want! In fact, about two weeks ago I bought a huge watermelon and ate the whole thing in about three days. I eat bacon cheeseburgers about three or four times a week, with cheddar AND bleu cheese! I eat pizza, Chinese food, sushi, coconut, and anything else I want to eat now.

I'm not trying to "rub it in" or anything, but it's quite apparent after reading this thread that each of us react differently to foods. I don't eat nuts, only because I don't digest them and I'm afraid a jagged one might poke a hole in my pouch. They don't bother me or anything, though.

About the only thing that bothers me is red wine. It goes through me too quickly and my pouch fills to capacity quickly with very watery discharge. Everything else is fine, but I don't eat right before I go to bed, which is probably why I don't have to empty at night.

I do need to drink more water, though. I know I'm not getting enough.

My doctor didn't tell me anything about diet, only that I needed to try things and if they bothered me to refrain from eating them.

Beatrice, thank you for those kind words, much appreciated. I really am sorry that you have to get up, but at least you are sleeping. Plus, don't worry about me, after my reversal in October, I plan on stepping out of an airplane and having one heck of a time singing all the way down, with a parachute. I might have needed this break after my daughter's death anyway, I really didn't give myself any time to grieve that loss and I find myself crying more and more now. I miss the heck out of her and all the BS fun we had. I raised one awesome kid and God bless her soul, she better be up in Heaven with a surfboard waiting on Mom. I am good and you are way too kind. I have had many losses in my life but nothing as much as losing my only daughter, I don't even have another one to talk to about her. I am way set in my ways in life to build up my self-esteem, it is fine with everything but how I look. I know I am a good mom, I know I did my best and I know I am not Job, but for some reason I have had to suffer a lot and I don't mean this bag or pouch, this was just a way to slow me down. At least I know I am doing all I can to help with this new movement in the US as I belong to everything and every phone bank this year because I am home. So don't feel sorry for me, I am okay, but thanks again for your much-needed kindness. Love, Jenny