Hello and thank you all in advance. I am 4 months out from my ileostomy being closed. My recent scope showed no pouchitis (I had been having lots of gas and diarrhea). I am feeling better, on Flagyl. I have added Metamucil per our nutritionist's suggestion. I am bored with what I'm eating. Lots of pretzels, rice, mashed potatoes, apple sauce, plain pasta, turkey or chicken, occasional salmon, some marshmallows, and yogurt and cheese (taken with a Lactaid pill even though in my past that was not an issue). I have tried canned pears and canned French-cut string beans. I crave variety. I wonder if there is a book or resource for how and when to increase fiber, types of fiber, types of foods, sample menus, anything that will help me slowly, carefully, and safely expand my diet. thank you, Stephen
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Stephen,
As I stated in a very recent post, my GI doctor told me this am to eat whatever I wanted and stop obsessing over what could be causing my GI distress. I was surprised to hear that and truly believe we need to add foods back slowly and in small amounts.
Example:
last week some family members went to a steak house, not me of course. They brought me a small leftover portion of a T-bone steak (mmmm good).
I ate the small leftover and had no ill effects. Would I eat a 20 oz full cut? Not if I want to live to see the next day😆
but those few bites I had were with wonderful and a real treat with no ill effects from it. Moderation, moderation, moderation.
btw
i am not very good at it, so while I talk a good game, I did eat a lot is sushi last weekend and felt sick for hours afterwards.
there’s a happy medium btw eat whatever you want and a planned strict diet. I guess eat person has to find what works for themselves .
I wish there were easy answers to all of this and we could go easily back to our lives the way they were.
eric
@Stephen J. Thompson, MD At four months out there’s no evidence-based reason to limit your diet. Why not add interesting foods, one at a time, and if any don’t work well for you then set them aside to try again at a later time?
Thanks for the replies. I forgot to mention the peanut butter. I eat lots of it! I will try to slowly add other foods. If I don’t I’ll go nuts from the boredom of the diet. Then again, I’m already a bit crazy with anxiety about the colorectal cancer and my prior kidney cancer. It’s been a rather difficult journey.
@Stephen J. Thompson, MD You can go faster if you like with very few consequences. You could add 3–4 (or more) new foods at a time. If all goes well then you’ve learned a lot, and if you have trouble there’s a little more detective work to do than if you had only added one food.
A bad result after a particular food might not really be the food, of course, but could be random fluctuation.
Thank you
I make homemade chicken,beef,fish burgers with canned peeled tomatoes, especially the Italian Roma tomatoes that are less acidic and lettuce .and lemon juice on chicken breast.Ham and marmite sandwiches,cottage pie.🍔🍟🍞🥪
Thank you. These replies are all very helpful.
Oatmeal and peas help
Re: Metamucil
Right out the gate I was taking Metamucil with every meal and bedtime, per doctor’s orders. I messed around with that for a month. I found out that I am sensitive to it. It causes gut irritation and gas for me. Stopping it was magical. I took Citrucel for a while, but have not messed with fiber supplements since about 6 months post op.
Other than that, I learned that if I eat what appeals to me, in moderation, I can eat practically anything. Mexican food, Italian food, Chinese food, etc. Fruits, veggies, it is all good. Mainly, it is not a science and there is no guide, because it is all so individual. I did find though that if I eat things that appeal to me, I am not too concerned with how quickly it goes through me. As long as it does not cause pain, I am good.
The hardest thing is patience. Distraction is good. I am 25+ years post op, so many, many years of reflection.
Jan
@Jan Dollar that is fascinating. I have had only canned fruits or cantaloupe and no other fruit. And canned carrots or canned French cut string beans, with rice, or baked/mashed potatoes. No other veggies yet. I take Metamucil twice a day. Still have some gas and bloating. Finishing a course of Flagyl at the moment. And not to be gross but often my poops float (no oil or fat seen in toilet). Seems so odd. This is such a learning curve. Amazing how one night with a lower GI bleed and diagnosis of colorectal cancer and my entire world has changed. I’m grateful for the wary diagnosis and to be alive. But my Ostomy incision hurts still 4 months out from reversal. My bathroom schedule is unpredictable. It’s a lot to get used to. Oh, and I’m a doc, so that adds to the stress and anxiety.
@Stephen J. Thompson, MD posted:@Jan Dollar that is fascinating. I have had only canned fruits or cantaloupe and no other fruit. And canned carrots or canned French cut string beans, with rice, or baked/mashed potatoes. No other veggies yet. I take Metamucil twice a day. Still have some gas and bloating. Finishing a course of Flagyl at the moment. And not to be gross but often my poops float (no oil or fat seen in toilet). Seems so odd. This is such a learning curve. Amazing how one night with a lower GI bleed and diagnosis of colorectal cancer and my entire world has changed. I’m grateful for the wary diagnosis and to be alive. But my Ostomy incision hurts still 4 months out from reversal. My bathroom schedule is unpredictable. It’s a lot to get used to. Oh, and I’m a doc, so that adds to the stress and anxiety.
Love your screen name, pretty impressive
Stephen,
It is funny (and sometimes not) that medical training/knowledge does not equate with automatically being able to navigate things like adapting to life without a colon. Unlike you, I had a lifetime of UC (granted, it was mostly in remission). My UC experiences in my teen years led me to become an RN. I thought I could reason my way around the “simple” thing of getting great function with a j-pouch. But, not one of my providers even hinted that psyllium husk could cause me problems. It seems to be recommended for practically everyone. Side effects are not real common, but boy-oh-boy, if you have them it is real!
I would recommend stopping the Metamucil and try another type of fiber if you still want to take a supplement, such as Citrucel, which is methylcellulose. This fiber is different because it is 100% soluble and non-fermentable. This means no gut irritation, gas, bloating, and pain. It is worth a try I think.
Jan
I’ve been using Benefiber from the beginning after takedown. My surgeon suggested it due to the fact that it can cause less gas in some patients than other fiber supplements. To be honest, I typically don’t have any gas that causes discomfort. My takedown was 5 years ago this coming August. Also, I am finding that I can eat lots of different foods at this point. Unfortunately, I have pre-diabetes, also I am low weight and get a good amount of exercise. Go figure! Therefore, I try to do low carb, high protein and fruits and vegetables. I just cook a lot of fresh foods from scratch. Also, my husband is on a lower sodium diet as well. Sucks to be 65 and older! LOL
It takes time and patience for your body to adjust. It’s mostly trial and error to see what your body will tolerate. Even 20 years later, I can be surprised by the consistency and texture of my stools. I remember the first few months keeping track of BM’s and foods. The first year I recall 10-12 or more BM’s a day. Now, I pee more times than poop. I can go 5,6,8 hours without a BM (depending on what I eat.) The only things that I avoid are popcorn and nuts though occasionally I will eat both in small amounts. For me, chewing foods well makes all the difference.
Good wishes to you that in time, you will (almost) forget thaT you even have the pouch.
Be well.
Thank you all for the replies and advice
@Stephen J. Thompson, MD posted:Thank you all for the replies and advice
Your welcome hon
Hi Stephen, I am of advanced age, and have had my pouch since 2011,I still struggle with diet. For me it's a hit or miss, I am happy that I have the pouch of course! But the reality is, it's not the real thing... Take a day at a time and march on, this is a blessing...
Thank you
Everyday I wonder what to have for dinner ,burgers have made me fat so now I'm trying stirfry with good results.
I had all three surgeries in 2015 and found that it's trial and error. I will say that I work in mental health and it is a very busy job so I have to eat small meals for lunch and shake for breakfast so I am not running to the restroom. I can eat anything but notice that it really has to be in moderation. For example, a whole ribeye steak will cause me pain and keep me up at night but half or a quarter of it, and i will be just fine. I also notice that mushrooms do not breakdown so I need to make sure that if I have them I chew them well. Hope this helps!
Thank you