I eat a modified Paleo diet.  I don't eat any sugars or carbs, and it's modified in the sense that I will eat certain minimally processed foods, like natural turkey sausage (which I eat with my eggs in the morning).  This is the most notable exception, but there are a few others. Otherwise I am eating mostly whole foods and avoiding any processed crap.

I have read some posts here giving various reasons/justifications for not giving up carbs and sugars by persons who are having J Pouch issues.  Apart from having a very "excusy" tone, most of them make no sense.  Part of the problem is that many pouchers who go through what I will call the "J Pouch Sales process", are told as part of that process that they will be able to and should eat everything with a J Pouch.  The caveats to those statements are never discussed with them, and the resulting brainwash then forms the resistance to change what are really, really bad dietary habits with a problem J pouch.  Even in my case it took a long time and a lot of research to overcome the brainwash I was subjected to.

I believe my diet has made a difference based on my scope results.  It has not freed me from dealing with pouchitis, but certainly the symptoms and the amount of inflammation have been reduced.

Low carb diets seem to help *some* pouchitis-prone J-pouchers reduce their tendency to develop pouchitis. It seems unnecessary to me unless there's an actual pouchitis problem - why make this change if you're doing fine? Paleo is a bit of a fiction, but it is one way to reduce carbs. Low FODMAPS makes more sense to me, though. 

I didn't develop pouchitis until 3 years post takedown. During that time I was eating everything and anything. Did that cause or hasten the development of pouchitis? The problem is you don't know. In hindsight I believe that if I had been taking VSL#3 from day 1 (and it didn't exist at that time) and eating more prudently from day 1, perhaps I would not have had SIBO and pouchitis develop. We will never know. The problem with indiscriminate eating from day 1 is that there is at least some empirical evidence, from the standpoint of the anatomical reality of the lack of a backwash valve, that SIBO is a clear risk factor for anyone who bombs a pouch with sugar and carbs. It's a roll of the dice. Heads is pouchitis or SIBO, tails is maybe you will do okay for a while. To me it's more of a dice roll because we know that the bacterial backup is going to happen. The J Pouch simply is mechanically different from the colon in this regard and it is an anatomical fact which cannot be changed.

For 15 years my ileum was completely clear of any inflammation.  After 15 years an irregular swath of inflammation developed in the neoterminal ileum above the J Pouch inlet. This was due to SIBO from backwash stool.  I have had a pouch for 23 years now, so I have had the benefit of having had the experience of seeing what happens over time.  During that 15 years I ate lots of sugars and carbs.  I can't prove that the backwash of bacteria would not have caused any inflammation had I been Paleo from Day 1 (and probiotics), but had I been on Paleo all those years I bet a lot of money that the inflammation is less, minor or microscopic in my neoterminal ileum.  In any event I am reducing it through diet.

Thump,

I am a kpoucher who has had my pouch since 1979 (over 35yrs!)...our pouches are essentially the same but the outlet is very different (outside stoma with a one-way anti-reflux valve which means that our output must be liquidy to function).

When I had my pouch done there was no talk of diet, probiotics were unheard of and basically we were told to eat whatever worked for us, drink gallons of coffee and prune juice to keep things liquid and to go along our merry way.

For 11 yrs I ate anything, any time and any way...I had recurrent pouchitis, tons of problems, gas & bloating...

In 1991 I learned about dissociating food groups (carbs (bread, cake, pastry, pasta, potatoes, rice etc) & proteins (meat, fish, chicken, eggs...) should never be eaten together, fruits before meals but never after, no diary, little or no sugar and veggies are neutrals that can be eaten with either protein or carbs). 

Within 1 week my pouch was a happy camper. It cooperated, drained properly, stopped bubbling over with gas and was so happy that I no longer recognised it.

From '91 to 2011 I remained faithful to my diet. My pouch was happy and healthy (other than the mechanical problems that I had that required surgeries).

I lived off of mostly chicken/fish & salads. I ate very few carbs, less sugar than now and remained strong...Since I have fallen off the wagon and back onto a heavy carb load (mostly sugars & diary but some bread/pasta) I have put on weight, feel bloaty and very uncomfortable. 

Carbs are very much a drug for some of us, the more we eat, the more we crave...at least in my case. 

I don't know what your lifestyle is like but a high protein, low carb diet, IMO can be very pouch friendly.

It takes a bit of organization and a detox period but once you are on it you should feel a change.

It does not work for everyone, takes a lot of sacrifice but it can be worth it.

Good luck

Sharon

Thanks for the replies.  I just usually ate few grains and mostly protein with fruit and veggies prior to all this arose.  I am hoping that one day I can get back there.  I know of a poucher who is a vegetarian and does well.  CT - what you say about no valve and SIBO makes physiologic sense in theory. I am trying to avoid simple sugars but it is part and partial with the low fiber diet, which I wondered how people were doing.  Scott - FODMAPs are very interesting concept and very useful.  What I noticed with the UC - I tried FODMAPs and noted I was already naturally avoiding things that made it worse, but there were other foods listed that caused no issue.  So, it seemed hit or miss.  The best luck noted prior to j pouch was a more paleo gluten free diet.  I felt the best I had in many years.  Now after the surgeries, I feel like I am a "junk food" diet -- and was looking for info on people that did paleo.  Sharon - I am not familiar with food group disassociation other then my friends that are Kosher.  I find carbs are like a drug -- the insulin spikes happen and I get fatigued...and I am pushing that hunger/fatigue cycle all day.  

Thanks again.

Thump,

The dissociated diet is a simple principal. Foods require different types of stomach acids (acid to alkaline) to digest. They also have different digestion times (proteins around 6hrs, starches 3, fruits 1/2 hr etc more or less) . The idea is to optimise digestion in such a way that your body uses what it needs and gets rid of the waste and toxins as quickly and effectively as possible. 

Toxins create illness & disease so by promoting optimised digestion your body creates fewer toxins and promotes balance & health.

So basically it tells you to stick to one major food group per meal like proteins or starches and then add your veggies to it. The idea is not to mix them at the same meal.

In fact I found that I created much less gas, had fewer bouts of pouchitis, less cramping, heartburn and bloating and felt much stronger. 

Considering that I am a true synic it took a lot to convince me but the 1st week did the trick. 

I agree that carbs are a drug...And I am a carb junkie! The more that I eat, the more I crave and then I just cannot get off of the treadmill. It is not just the weight, cramps and bloating but the high/low effect of sugar on me. When I eat sugar I get a rapid high but it is very short lived, around 1/2hr. Then I am so exhauted and sleepy that I can barely function. Naps are a must or I get cranky too. 

I can't afford the naps when working (I'm a teacher) so I don't eat carbs during the school week/year...I stick to little baggies with cubes of cheese or chicken, a bit of salad and dried fruits & nuts...I graze all day long so I never get the lows and my pouch is nice to me. 

We all function differently and have to find the diet that works best for your specific body. What I like is that it doesn't hurt to try new diets and it costs nothing...and sometimes you get a nice surprise.

PM me if you want more info on it

Sharon

Dietary habits can be hard to change, and as Sharon suggested, experimentation makes sense because we are all very different in our toleration of things.  A few months ago I noticed some terrible slippage from my normal baseline of "simmering" but controlled pouchitis, and had to up my antibiotic dosage and go on Entocort.  I am weaned off of Entocort now, but I am taking Metamucil 3 times a day now which I wasn't previously and I feel that is making a difference.  I am also very diligent with the Paleo diet, and with just a few modifications like minimally processed sausage with natural ingredients.  I was struggling with portion control and as was mentioned elsewhere, fasting between meals really can help with the SIBO, and I think it has.

I just bought some natural minimal processed pork sausages at Whole Foods Market over the weekend and I noticed that they have a new "Animal Welfare Rating".  My sausages had a rating of 1.  Apparently the criteria for these ratings are the 3 Cs- crates, cages and crowding.  I asked a lady at WFM where the sudden death of the hog in order to be my breakfast was factored into these ratings.  Her response was "the ratings are for you to know how happy his life was before he came to you." I was amused.

Other than happy pigs, and eggs from happy chickens, I am eating a lot of salads and avoiding carbs and sugars very aggressively as much as possible.  I am really determined to keep my J Pouch as I have had it for 23 years and I plan on dying with it and letting it be examined at Cleveland Clinic after I croak.  In fact I am going to contact Dr. O and give him right of first refusal and if he doesn't want it I will let Dr. Shen have it.  I am going to have this put in my will once these discussions are finalized.  However I have to die with the J Pouch for these wishes to be kept, so I have to do my part, which is to keep it going until I die.

CT - you crack me up!  We currently have chickens that live happy chicken lives.  But I get the chickens are peripherally involved, while the pig in your sausage was totally committed.  ;-)  I do like the idea of animals being able to be normal animals doing their normal things prior to committing to the food chain.  We eat a lot of venison in our house for that reason.  

Well it is really the lady at Whole Foods Market who cracked me up.  She was the one who told me my sausages are from happy pigs and my eggs come from happy chickens.  I presume that this is how WFM trains their employees to explain the "Animal Welfare Rating" on the packaged foods they are selling.  I understand it is partly marketing but I still find it amusing as I do Plan B Burger marketing their burgers as coming from "humanely raised" cows, leading my father to question whether they were humanely killed.  I see that Plan B has apparently recently stopped with that marketing pitch.

Hi Sharon...years ago I read an article about dissociating food groups, but I forgot the name and who wrote it.  I do remember it being very interesting to me and then life got crazy and I never followed through.  Now it appears I am definetly having some issues.  Some of my friends are sending me stuff on leaky gut syndrome and paleo diet.  But then I saw your post and was reminded of what I read about food groups.  Do you have any info or writings that I can search up and I am thinking I need to try.  Years ago I gave up so called "sugar" and really started to feel better but then I got sick and hubbie bought frozen popsicles (the kid kind) and boom instantly hooked back on sugar.  I have been trying again to stay away, it is so hard though!!! I am always so tired now and have very little energy so to just grab something quick to eat is easier than "thinking" about, but I know I can't keep going like this.  Any info or suggestions would be great.  Thank you kindly.

Patti