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7 replies

A Diet that can actually save me

N nolaMember
I've had my j-pouch for a few years and it's just a nonstop battle, with all the typical symptoms varying week to week. Had severe UC--Remzi did the surgeries. Shen did the maintenance. With the discussion of complications and stuff only doctors can do aside, I know it's to the point where the only chance I have to somehow turn my life around is to take this into my own hands via an absolutely perfect and consistent diet.

I'll start by saying I know inside and out all the DOs and DONTs with foods and which ones cause which symptoms, etc. I've been playing the trial and error game for years. Yeah, there may be a good day (barely) now and then, but none of the "mainstream" j-pouch diet suggestions are truly making a difference.

**** I need a regiment that is "outside-the-box" and is capable of truly turning my life around ******

Now, I know there's been LOTS of discussion about diets, but I was wondering if any of you have filtered through it and are strongly familiar with the chemistry of very healthy, perhaps unusual, food and supplement combination, and would be able to point me in the right direction for building a daily routine? I'm not looking for lists of foods that thicken or loosen, burn or cause odor, etc. I'm looking for potentially powerful diet overhaul ideas that have had proven results for people not just with some sort of severe IBD, but also people like us without a colon. I think that part is key because I've read books, seen all over the web, and listened to podcasts of experts with amazing diets that have changed their lives, but these were always people who had severe UC or Crohns, but had not gotten to the point of colectomy/j-pouch. And therefore, we cannot apply those "miracle" diets because our lack of colon introduces a huge new array of restrictions (i.e. many times they focus on large quantities of organic veggies, and I for one can only tolerate some veggies in very small amounts w/o risking obstruction).

Just to add another wrinkle, I personally desperately need to be able to gain weight, so hopefully there is a solution that can still help given that variable.

I hope I'm making some sense and would be very thankful if anyone shared their knowledge or had some helpful resources to point me to. I'm thinking that some sort of advanced daily smoothie will likely be involved. If nothing else, are there any suggestions for a super nutritious, yet j-pouch friendly smoothie? I think "super nutritious" is kind of the key theme I'm hoping for with this thread. What is a diet that not only helps prevent some of the daily struggles we have, but also has the potential for a total health and longevity improvement?

For the record, I have been taking VSL#3DS for a couple years and it has not helped at all, so I think I need some ideas bigger than just adding a specific probiotic or supplement. When I read about aggressive SCD diets, I just see a lot about how it can also hurt you badly at first and it is not a lot of intake so weight gain would be worse. but, in general, I'm looking for something aggressive like that. I'm willing to go to my local natural foods store and buy all kinds of things I've never heard of if that's what it takes!

Thanks for letting me pick your brains.
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G GraceBMember
I completely understand how you feel. I also had j-pouch surgery due to ulcerative colitis. It has been 4 years since my take down. I also am dealing with food digestion and weight gain. I, like you try everything and take suggestions from anyone that may be able to help . I have been making protein drinks and adding carrot, baby spinach, coconut oil, flaxseed, coconut water and a some fruit watermelon banana apple some berries, pineapple and sometimes almond milk. You have to start with one thing at a time and build slowly. I don't put to much of any of the above because I am always afraid that it will not agree with me. A
lways buy organic vegetables when you put them in your shake and I also take multivitamin, calcium, magnesium vit B3 and b12 shots. Sometimes I even buy baby food and put it in the shake. I do take my antibiotic and lomitil in the morning after breakfast which is whole wheat bread with creamy peanut butter with honey. I don't eat to much while I am out shopping because I do get gassy and uncomfortable. I don't like to take too much lomotil because it blocks me up. I try to get the most nutrition that I can get. The drink does give me gas and a little pain but so does everything I eat. I also eat a lot of protein and drink plenty of water during the day. I try not to eat anything after 7:30. I am also taking antibiotic every day to prevent pouchitis. I was taking vsl#3 but because of the gas problem my gastro told me stop taking that for awhile and just continue with the antibiotic. I am always happy to know that some of you do very well with j-pouch. Unfortuna
tely some of us don't. One more thing I just can't eat anything that has fat and dairy products Hard cheese is ok but not anything sharp.I do pick on low fat swiss cheese and pretzels I do try to eat little meals but it is hard. Again I can't say it enough that I love reading everyones post It does help me tremendously. I hope that I was able to help you in some way. I know it is not easy Grace
C CeeeeCeeeeMember
Just by reading both situations and sensing what we all look for...something that works....it has been my experience that what works for one person may or may not work for another and to really frustrate us is what works "today" may or may not work a week, month or several months from now. Having a J-pouch is certainly a journey. I find the need to be flexible and willing to accept trial and error scenarios very important. For me, whatever the course of my journey is, it is so much better than the years I experienced the horrible symptoms of ulcerative colitis. Best wishes.
C chalMember
I won't go into details about my diet because I know it's not at all what you are looking for. But something that has been a tremendous help to me no matter what my diet is Levsin. It is a med used for stomach cramps. I've never heard much about it on this forum. (J-pouch for 10 years). I am retired so don't have to go out everyday. But anytime I am going out for morning errands or out to dinner with friends I take one and I can usually avoid restrooms for 4-6 hours. Also take one at bedtime and only get up once during the night. And it doesn't make me feel bloated or anything. Only other thing I take is probiotics. I don't take Imodium or similar things because I don't like the way it makes me feel. Sorry I can't help with the diet. Good luck.
N nolaMember
Thanks so much for the replies. Sorry I didn't respond sooner.

@Grace, you do sound like a very similar situation to me. Also, I too take daily antibiotics per doctor request to slow chronic pouchitis, but honestly I don't care what he says, it's not something I want to do forever, it can't be good for the body. I think as we progress with these shakes and supplements, our body can achieve strength to avoid the inflamtion and get off the cipro/flagyl. Your smoothie sounds a lot like one I'm doing too (found it shortly after I posted this). In fact, I strain out some of the fiber in a mesh strainer so it doesn't overwhelm me at first. Thanks also for sharing some of your routine ideas. Send me your email in a message and maybe we can bounce indeas off each other over time that work for each of us.

@CeeeeCeeee, you make good points. i'm totally open to the trial and error game. mostly, i'm just seeking new "trials" to try Smiler Good point that's it's not worse than the beginnings.

@Chal, I'll look into levasin, thanks so much.

Again, appreciate the replies. Thanks for relating and I'm glad we can work through this together.

-Drew
S sudieMember
I had u.c surgery 6 years ago this month, have had several pouchitus attacks over the years, been in hospital 4 times in the last 12 months for blockages. Go the the toilet up to 20 times a day, in January gave myself this year to sort thinga out or go back to a bag. So started seeing a dietician who is knowledgable on FOODMAPS. Am having some success not having to get up in the night was getting up every hour and half was exhausting.WE have found through trial that I am having trouble with sorbitol fructose and mannitol . I am lactose and gluten intolerant but have found I can have spelt flour so am making my own bread. Honey cauliflower watermelon apples are just a few thing I cannot eat they cause cramping spasms and lots more toilet trips. I still have a lot more investigating to do but find the dietician has helped greatly. She gave me an app for my phone which I find handy when shopping as I can refer to it for ingreadiance I can buy or not to buy. It has recipes and explains how this works .
It's called Monash university low foodmap diet. Also I cannot take probiotics as I get symptoms like pouchitus running to the loo.i take 2 gastro stop tablets in the afternoon and going to bed also benefiber in the afternoon. I am finding some relief not sure if this helps you I know I was at a point I would do anything for some relief. All the best Susan
DaffodillyDaffodillyMember
I've been eating the ketogenic diet for the past 7 months which is a high fat, low carb, moderate protein diet. My main reason was to control my blood sugars as I have Type 1 diabetes and it has helped tremendously. It has also improved my jpouch. I had been on antibiotics for 4 years and was able to go off them 6 weeks into doing Keto. Keto diet doesn't allow any grains, sugars, or fruits. Most calories come from fat. Go to ruled.me to learn more and there are a number of support groups on FB. For most people Lipid levels improve on this diet. It is sometimes called "keto therapy" and is used for a lot of auto immune problems. I wish you the best!

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