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I have had many dietary suggestions - most from physicians - and nothing has worked for me thus far.  I have had the low residue diet, the BRATT diet, suggestions of jelly beans, marshmallows, etc.

What I am interested in is reading some of your dietary plans that have helped you.  While I understand that every diet is based on the individual (we all react differently to the foods we eat) I am at a loss for what to eat and am just looking for suggestions/plans that I can try in my daily routine to see what one of you may have found that may work for me. 

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I use a protein powder all made from plants called PlantFusion.  It's nut, soy, gluten, lactose etc. free.  One serving supplies 43% of daily protein needs.  I eat a super smootie made with bananas, fruits and veggs plus unsweetened Almond Milk. I have several Greek yogurts a day too.  The more things are smoothed out and  liquefied the better for me to digest.  I eat an English muffin with a bit of peanut butter too.

 

When I eat other things they are chicken, mashed potatoes, mac and cheese and pizza etc. I also read a tip on here several years ago written by an UPS driver who ate 3 or 4 rice krispie treats a day.  He couldn't go just anywhere to the restroom and the marshmellows were good for that pus it is a cereal but they contain a lot of sugar. I eat salty things too like saltine crackers and potato chips

 

I have chronic pouchitis and cuffitis so my diet hasn't cured me.  I just eat what looks good to me. Red meat especially doesn't look or taste good. I quit eating it a year before my surgeries.  Alcohol doesn't even taste good to me anymore and that's a good thing because I'm still taking pain medication.  I miss having a few drinks with others around as things are funnier to those that are drinking, lol.  When I drink on occasion I try to get in as much hydration as I can so I don't get dehydrated.  The best is a bloody mary and second best is vodka or gin with orange juice or tonic water.  

 

I use to use 2 packets of VSK#3DS daily, mixed in with the yogurts and smoothies.  Since my balloon dilation of my j-pouch in February I quit using it hoping the high powered antibiotics rotation would work. I'm on an expensive Xifan for 2 weeks to Augmenin for 2 then back to Xifan etc.  I recently took a week off and used 2-4 packets daily. I felt like my body needed it as I might have had a yeast infection.  Who knows?  We have to do like you said, what feels best for us.

 

One of the docs on my surgical team told me to take a few bites of everything and see how I felt.  She didn'/t want me slamming pasta etc.  

 

TE Marie
Last edited by TE Marie

I follow a gluten & lactose free diet. since Ive had a total colectomy over 30+ years now it's the best thing since gluten affects the small intestine. Just wish my doctor would have told me about it before I diagnosed myself 7 years ago. the bratt diet is all the doctors seem to know about nutrition & UC

i found going to a nutritionist to be very helpful. 

 

Y

What symptoms are you trying to control?  Frequency?  Stool consistency?  Pouchitis?  

 

I followed nothing special, and for 20 years, I had nearly zero issues. 

 

Last few years have been a bit different. FODMAP helped me deal with editing some of my bloating triggers, a pouch outlet narrowing has caused me to pause over foods like granola or something like pumpkin seeds or popcorn in any large amount... But overall, I still do little different. I go about 4-6x/day, nearly zero nighttime visits. 

rachelraven
Last edited by rachelraven

Thanks for the replies.

 

I am trying to find a diet that I can live with.  After 6 years I am still going 15-20 times per day and I am up 2-3 times every night.  It feels like everything that I have tried has failed - dietary wise (and medical wise).  While I do not know if anyone's suggestions will help - it allows me something to try and to give me hope that what helped one person may help me.

 

I am allergic to bananas - so that is something that I cannot do.  With my luck, it is probably the one food that would work.  I have tried a low-residue diet and the BRATT diet and neither has helped. 

 

My GI doctor does not want to put me on an antibiotic yet.  I have been on Flagyl from time to time when things were even worse.  Right now he has me trying Cholestyramine and after a week it has actually increased my bathroom visits.  Asulfadine, Asacol, Pentasa, high doses of Prednisone, Remicaide, Lomotil, and Imodium have not helped at all.  That is why I am exploring different dietary suggestions to see if I can find that "odd" one that worked for someone else. 

 

Thanks for the replies.

Tiberius

Konsyl is a great product, but a bit less pleasant to swallow than Metamucil. I actually mix them 50/50 at each dose. Konsyl works best if shaken rather than stirred. Metamucil powder has either sugar or artificial sweetener, whereas Konsyl "Original" is just plain psyllium husk. To clear up one thing, though: Metamucil has no gluten at all.

Scott F

I agree as it sounds like you should be on antibiotics.  Much better than remacaide and all the other meds you listed!!  I took one lonely Asacol I found a while back and it came through quickly and didn't open up.  They are made to open in the ph of a colon and apparently j-pouches don't have the same ph.

 

I had to take loperamide 3 or 4 times a day and up to 8 pills before I went on antibiotics.  It doesn't sound like he's put you on any kind of suppository yet and Anucort which is a cortisone suppository might help too.

 

My local GI sent me to an IBD specialist at the Mayo Clinic when he couldn't help me get rid of my cuffitis.  He said he was a generalist of the entire digestive tract and I needed someone with more knowledge and experience. I'm thinking it 's probably time for your doctor to do the same.  To send you to a specialist close to where you live.  Cleveland Clinics have great doctors too.  There are many other's depending on where you live.

 

Good luck!

TE Marie

I found that in the 1st year of my take down  surgery I could hardly eat anything.  It seems I always have problems with food.  As time goes by I am able to tolerate foods better.  I know what to stay away from .  I am on a constant antibiotic every day alternating cipro and flagy  every two weeks and take vsl#3 every morning and in the evening I take antibiotic for constant pouchitis.  I am able to eat vegetables that are not gassy and cooked well. I stay away from red meat it seems to bother me..  I also eat gluten and gluten free.  I stay away from any kind of dairy, hot spice or any thing that is hard to chew.  I just started eating a little fruit but not much, cooked fruit is more tolerable for me   I don't eat a lot of cookies or candy because sugar aggravates the pouchitis I mostly stick with natural honey to sweeten my tea. toast or anything else that would sound good with honey. I do make my own cookies so  I can regulate the sugar.  What I have done is every few months I would try something different in small amounts to see if I can tolerate it. If it doesn't agree with me I will try it again after a time. As you know everyone is different you have to try and figure out what is good for you.  By talking with the group has helped me tremendously. Sometimes I get more info by talking to everyone on this sight.  Talking to everyone here gives you more info than you will ever get.  But again what works one person doesn't necessarily work for another.      Good Luck   Grace

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


  

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