FODMAPS and lack of Large Intestine...

The ileum used to form the pouch is somewhat like a large intestine. It holds stool and even starts to look like colonic tissue at the cellular level. That being said, all of these diets include guesswork and require realistic expectations. They are crude tools in poorly understood environments. There's just a general understanding that low carbs seem to help with pouchitis problems.

There aren't really just "good bacteria" and "bad bacteria." Even if there were, the interventions (antibiotics, probiotics, diet) don't magically operate only on the "bad" ones. There are actually many hundreds of bacterial species in the gut, and multiple strains of each species. We have a vague understanding at this point that the balance of these bacteria can lead to good or not-so-good intestinal health, and we've got some crude tools that seem to help sometimes (or at least do more good than harm). Adding to the complexity is the problem that no two of us have the same intestinal flora, so in some sense no two of us have exactly the same intestinal disease.

To make matters worse, as you've observed, a J-pouch isn't a colon. Some things learned from colon studies will turn out to apply to J-pouchers, and others won't. I don't think theory will answer your questions; at best it will give you some things worth trying. The good news is that unlike surgery, your diet can be changed whenever you choose. It's easier to adjust than a bad haircut.

Thanks Scott. Your thoughtful and well-written response was greatly appreciated; like reading the articles I've been reading for a while; at the moment Omega 6 fatty acids and inflamation (Grapeseed oil etc versus saturated fats--animal fats etc). The research is fascinating. But, it doesn't remove the headache of trying to understand and trying to balance diets etc... Plus, what seems like a lot of very well intentioned information suddenly causes warning lights to switch on questioning truly what is the person's agenda...

Thanks again for responding.

Ross

Trial and error. That's what it is!

I did the FODMAP elimination and reintroduction, and found some triggers.

What was odd is that the foods that I find as "triggers," I've been avoiding them instinctively anyway (beans (galactans) and fructose (apples, pears) and fructans (wheat).

I HAVE found, in doing the diet, that wheat IS a trigger for me. I did have some lab Celiac numbers come back as positive, but by biopsy, I don't have Celiac disease. So I'm not 100% sure that I'm bothered by the gluten or the sugar portion (the fructans) .

Regardless, I feel better without it. I can tolerate, say, croutons on a salad... but a pasta meal with bread, NO. I also have found that I just can't tolerate starches in LARGE quantities these days, either (rice, potatoes, etc.), and do better with a meal like, salmon and sauteed veggies with an appropriate fruit for dessert. If I eat a starch, I need to focus on having that meal have veggies in it, or a salad.

It's all trial and error, again.

For YEARS, I could eat ANYTHING I wanted. And I mean ANYTHING, pouch be damned. Never had issues. But the older she gets, the crankier she gets, so I just keep up with her, and eliminate or moderate as necessary.

And what might work for me for 8 months may suddenly not work, too. I've had those things happen as well, but often when that starts, I need to know that it's probably my outlet narrowing again. However, I'm on Canasa suppositories, so I'm hoping that that helps in the long run, too.

Good luck!

Hi Rachel. You can be diagnosed negative for Celiac Disease and still have gluten intollerance or wheat allergies... Wheat also offers 2 other proteins that cause digestive issues other than gluten... It's interesting about apples; I spent most of my life avoiding them. First because I didn't like the skin (just as I didn't like the crust of bread as a child). And then I noticed eating apples on an empty stomach caused horrible cramping and belching... I loved apple cider as a child. However, at times I would experience horrible alergic reactions. Thanks to Jess of "The Patient Celiac", http://www.thepatientceliac.com/
I understand that the reaction is to Sulfates caused by a problem with histamines... That said, since 2006, I've been using Apples for relieving symptoms of Pouchitis (Apples are very high in pro-biotics) and surprisingly, they help with blockage caused by other dietary fiber... No matter what anyone says about FODMAPS, I will not remove Apples from my diet; it would be like giving Superman a bar of Kryptonite (Don't worry, I'm not a science fiction or Superheroes fanatic; for some reason it appeared as an easy anectdote)...

June 7th I'll be 3 months with very very few simple carbs (maybe the equivalent of 4 teaspoons of sugar with coffee per day and possibly two tablespoons of honey in a liter of water for when I run; the normal human body needs very little glucose converted from carbohydrates for healthy function. The exception is with serious athletes like marathoners. To prevent muscle fatigue; a little sugar before and after the workout). At first I removed the dairy products with the exception of natural yogurt. But, now I'm flexible with the cheese and milk... As for wheat products and other grains... Forget about it! I could possibly cheat later on, but with rice or with corn or potatoes. But, not with wheat...

I don't believe it is necessary to test for celiac if you understand all the risk connected with eating wheat products. And, yes, gluten comes from other grains other than wheat... I think it is sufficient understanding the modern industrial diet and the related repercussions. FODMAPS is a whole different thing. And, truthfully, I don't want to find myself avoiding onions and garlic etc... I can remove the plums due to their sugar content. But, apples? It's sufficient that I have issues with metabolizing histamines. And I haven't begun THAT reduction diet. Although I am cautious with certain things such as deli meats and canned goods, preserved goods, aged goods, vinegars... Alcohol. Fortunately, removing simple carbs and gluten also removes all alcohol. And if I wanted to cheat with simple carbs, that would be restricted to alcohols without gluten (bye! bye! wonderful Mexican beer). Then again, alcohol is the most destructive thing humans place in their bodies; so no true sadness here...

Have you read about Omega 6 and cooking oils? After the finding of animal fats (nor LDL cholesterol) not causing heart disease, instead heart disease is caused by triglycerides from carbohydrates, it has come to light that Omega 6 in vegetable oils is the main cause of inflamation in the body and also arterial plaques that lead to heart attacks... (Canola oil is one of the culprits, although with the lowest level of Omega 6 on the list of bad guys). And after years of hearing that Coconut oils is the worst vegetable oil you could place in your body, it now is up on the list next to olive oil...

What can you do? Expand your concepts connected with Jewish Proverbs like what the Kabbalist Rabbi mentioned to a group of us in New York City at the end of the 90s; when you encounter your soulmate, don't expect everything to be perfect from that point on. No, expect a ton of suffering. Why? Because he or she inspires you to improve yourself; to be the best person you can be. And that pressure will not ease; hence the interpersonal conflicts and struggles. They entered your life to make it more difficult; meaning more potential of positive evolution. Did you know the book written in the 90s by a certain psychotheorist from Chicago with a long Polish last name called "Flow"? Not the same concept, but can be connected with the idea of heavy challenges placed upon those ever broadening shoulders you asked for :-) Life is your soulmate as is the reflection in your mirror and you've gotta be true to her and give back to her an adequate response to what she constantly throws at you. I don't know if we accomplish all we must, although I imagine that we do what we must and that we don't truly fail, since the failure also is part of the challenge and something you must contemplate too... But it may be an illusion or a necessary distraction; delaying your knowing everything and having too easy a time of it...

I know that crazy experience of things working and suddenly not working; the trial and error. The frustration of the "experts" not having the answers or the understanding... the preparedness... It's part of the burden with which we were born and somehow somewhere there is a great positive buried within. A little over a month ago my brother-in-law José said, "it's a good thing you inherited your father's disease. Because of your risk and suffering you've researched so much into diet and diet-related disease and the information you've encounted and shared with us will help us live healthier"... I responded, "well that's an interesting take, although at my expense..." It was the second time that someone said something to that tone. The first time was in NYC in the late 90s. Anya said, "I'm glad your father died when you were a little boy and you inherited his disease. Otherwise you would have been such a priveleged bastard (my poetic license), probably a doctor too with a wife and children living in Westchester County and you wouldn't have batted an eye at me..." Anya was from a Ukrainain Jewish family that received asylum in the U.S. when she was 8-years-old. Truthfully, in my eyes she was gorgeous (straight from Fiddler on the Roof). But as is true of all relationships, each person carries with them their own baggage and their own prejudices against themselves that they project upon the other person, as if we believe the same. But, she may have had a point. Who knows? If I had been more privileged, maybe I would have been looking for a more "white-bread" life. Instead, I moved to Mexico and married a woman from a very very poor coffee producing ranch and I can't expect to find any specialists in Familial Adenamatous Poliposis or J-Pouches or nutrition etc... So, for 8 years now, I must be my very own doctor, nutritionist and researcher...

Thanks for writing. I really appreciated it (if you hadn't noticed :-)