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I've had my pouch since 2013 and ive had problems with leaking while I sleep since then. I've tried literally everything for it and nothing has worked. My surgeon has told my only option is to go back to the bag but he is going to do one more scope to make sure.
I really do not want the bag so I want to try everything before I go back to it. Does anyone think that changing my diet to paleo would do anything or would I just be wasting my time? Thanks
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Mark-

I think I'd try low FODMAPs over paleo, based on what I've read about both. The science behind FODMAPs is much better.

 

If leaking during sleep is really the key issue, a very strong bowel slower at bedtime might help (e.g. Tincture of Opium). It has helped some people here very much. A gastroenterologist might be better equipped to discuss that medication than a surgeon. It can be hard to get a prescription and hard to find someplace to fill it.

 

I'm assuming that you've tried aggressive pouchitis treatments already. Nighttime leakage is the first sign of pouchitis for me. Even if your pouch looks normal, this would be well worth a try.

I agree with Scott about diet, have been following fodmap the last 18months with the help of a dietician who is knowledgable on fodmap with great results, I was going 20 times a day cramping gurgling urgency, I actually tried peaches yesterday resulting in problems, but I am down to 6 toilet trips do not get up at night feeling good. I did try a dietician before but found she was not knowledgable about fodmap and was not getting results with her,I gave myself 12 months to sort this out or go back to the bag,glad I  stuck it out been battling this for 7 years. Hope this helps 

This thread proceeds on the assumption that there is only one Paleo Diet, which is inaccurate.  There are modified versions of the Paleo Diet for both autoimmune disorder and inflammatory bowel disease, and various books on this subject.  Here is an article about the modified Paleo Diet for autoimmune disease:

 

http://health.usnews.com/healt...une-paleo-diet-legit

 

A fundamental distinction between the Paleo autoimmune diet and low FODMAP diet is the former's banishment of nightshade vegetables.  The theory behind this is that the nightshades promote inflammation as discussed in the above article.  Low FODMAP encourages consumption of these foods, on the other hand.  So if your analysis is as lazy and simplistic as "well low FODMAP allows potatoes and eggplant and tomatoes and hot peppers and I don't want to give them up!!!!!", then you might be happier if not healthier on the low FODMAP diet.

 

At the risk of being critical the discussion in this thread is way too simplistic.  Unless you actually do the research and look at what the science is supporting these diets you will be making conclusions on your health based on generalizations or categorizations that are not even correct.  On the other hand, as someone who has actually done the research and read some books on the subject and the science backing the various theories, there is a lot of conflict out there. What it comes down to is whose reasoning you want to believe.  It's very much like choosing a religion.  There is science out there but varying interpretations of it and various studies showing different things.

 

It reminds me of a discussion about religion I overheard (but did not participate in) at the condominium swimming pool a few weeks ago.  One of my neighbors (who is Catholic) said to another neighbor (who is Protestant), "there are no differences in our religions.  We believe in the same God, and that Jesus Christ is the Lord Savior.  The difference between us and the Jews is that they don't believe Jesus Christ is their Savior."  When someone pointed out that Jesus Christ was himself a Jew, his response was, "no, he wasn't.  He was appointed by God to be Savior of the Christians. I try to tell this to my Jewish friends and they don't believe me." As this statement was made, I looked over at two of my Jewish neighbors on the other side of the pool (I don't believe the declarant knew they were Jewish) and by the looks on their faces, they were mortified, but tightlipped.

 

Basically when it comes down to diet it is all a matter of interpretation of competing theories of how the science out there should be applied to what we can and should eat.

Last edited by CTBarrister

I strongly believe in paleo based on my feelings when I eat this type of food or modified. At present I believe that there are some foods more or less harmful for our guts and that are (in order of danger):

 

1) wheat

2) lactose / casein

3) yeasts

4) abundance of refined sugars

 

Based on this paleo is for sure one of the best diets but with some tweaks that are:

 

0) abundance of meats and fish

1) no insoluble fiber intake, and low well chewed and or cooked soluble fiber intake

2) some squash / potato / rice /legumes are perfectly acceptable

3) coffee is actually good as full of anti-oxidants

4) take prebiotics and probiotics (lactulose + vsl3)

5) when cheating take some fiber (psyllium/metamucil) and try to empty the pouch more frequently

 

Those are just guidelines I like to follow the best I can, when I eat alone or I prepare lunch for myself, if someone invites me, or I'm out for dinner and there's just pizza, or I'm out for a drink, I don't miss them and perhaps I follow the point 5) the best that I can. My goal is to reach good crp values following those rules, and minimizing the antibiotics intake for pouchitis (my doctor prescribes me a course of ciproxin once a month but I want to avoid it, and at the moment I feel I'm in the right track).

Last edited by Ikh

lkh,

 

Your reasoning is sound, but I would point out that the author of the book I read on Paleo for autoimmune disease would disagree with you strongly on your guideline #2.  The main focus of that diet and the main difference between Paleo/autoimmune and low Fodmap is elimination of the nightshades.  According to the author and the more stringent disciples of this diet, nightshades = evil.  To use the religion analogy, playing with nightshades is like consorting with Satan. I am not endorsing that point of view- just pointing it out to those who truly wish to be educated on this subject.  Also, the author has a different take on legume consumption as well.  See this:

 

https://jet.com/product/produc...2X9McCFcMXHwodnSIAPA

 

Last edited by CTBarrister

I knew that point of view as I know it very well because my point 2 is actually contrary to a paleo diet (not only an anti-autoimmune paleo); the point is that I reached this "compromise" because often is impossible to strictly follow a regime where you have no carbs at all (but I agree that you can); in my case I think that albeit in some instance not very healthy for anyone and causing inflamation, those foods are anyway not worse than the ones I listed above and probably better.

Actually I'm not sure they are evil as they give you calories we need to live, something not necessarily found in strictly accepted paleo foods. In many instance I feel good and full of energy after a dish of rice, and I'm still examining the actual harmful effect that rice or potatoes can have for us. I read once that japanese researchers found that traditional japanese foods (algae, rice above all) are prebiotic and probiotic, and are not associated with crohn's or uc, differently from foods as bread. Who knows the truth? I start from the point that my doctore allow me all types of foods excepted fibers, and try to understand how my body react; the anti-autoimmune diet is a theory and could be correct but not necessarily in the whole package, and perhaps some no-gluten cereal as rice or carb potatoes are nice to be digested for us.

 

There is very, very little science in *any* dietary recommendations for J-pouchers. Don't confuse carefully grouped categies of foods assigned important-sounding scientific names with actual scientific evidence of health benefits. Fortunately, you can (and sometimes should) do the definitive research yourself, on your own body, at least if more proven interventions aren't doing the trick for you. Taking the time to study what foods (or goups of foods) actually make you feel better or worse over time can be quite useful, though it can also be *very* hard to tell those effects from unrelated (essentially random) changes. Other people's theories, beliefs, and even successes can at best give you some interesting ideas to try.

Scott F,

 

That is not really true.  The UMass IBD-AID Diet was developed by medical professionals at UMass Medical School based on scientific research and studies, unless you choose to believe that they are engaged in "junk science", and are frauds. I choose to believe that they are professionals. Since I am a UConn grad I hate to go to bat for UMass, but in this situation I will let them and their studies speak for themselves:

 

http://www.umassmed.edu/nutrit...aid-diet-quick-view/

http://scdlifestyle.com/2012/0...-study-sees-success/

 

All of the above being said, I have studied this diet carefully, and I don't really understand it.

 

The Paleo Autoimmune Disease Diet is also based (in part) on much scientific research showing that the incidence of IBD is highest in countries eating tons of processed foods, and lowest in countries that don't eat any processed foods.  You can ignore this research or say it's not scientific, but it doesn't mean it isn't there or that conclusions may not be made based on these studies.

 

Some people who follow these diets believe that IBD and other autoimmune diseases developed due to changes brought on in diet over the past 150 years with the advent of modern food processing technology.  Since we don't know for sure what the incidences of IBD or autoimmune disorder were before 1850 or even 1900 for that matter, we will never be able to verify the science.  The fact that you can't verify it does not mean it that it isn't a valid theory based on studies and research assessing available data.

Last edited by CTBarrister

I agree with CTBarrister.  There is not one Paleo diet.  The common theme is to eat real, whole, unprocessed food. I get annoyed when I read that Paleo is mostly meat.  People during the Paleolithic period ate very different diets, depending on where they lived, the season, etc.  In some regions people ate mostly meat, but certainly not in all of them.  They did not eat food coloring, artificial flavors, preservatives, etc! I know a few people who greatly benefited from getting rid of nightshades-- certainly worth a try.  Others do well low carb/ ketogenic (or you could do both).  You need to read and carefully test foods/ diets on yourself.  What works for one person may not work for another.  And what works at one stage of your life may not at another stage.

Good luck!

 

Had similar problems years back, my take down courtesy of UC was 1996. i was strongly told then if I don't do major pelvic floor exercises for my butt, I would be wearing a nappy the rest of my life. So i crunched those pelvic floors out when ever i they entered my mind. hence to say no nappy today. Also this is out of left field but i had a injury long time back i am a professional Sportsman non competitive now. Where my doctor prescribed mersyndol forte 2 twice for pain relief , daily  morning & night. I have never really taken  anything anyhow

WOW slept all night (normally 2 to 3 toilet calls nightly) Blew me away. So went back to my Family Doctor who knows my history & asked why. His reply Codeine is a binder in a normal person causes constipation for me just bound me up for a period. So i asked if he would prescribe just the codeine changed my life, I took 2 x 30mg tablets nightly for years my body has now got use to it so now does not bind as good & i found 1 only does the same job but i now get up once or twice which is still better than 2 or3.

But for many years this was bliss  could get a great period of sleep

. NOW YOU MUST REALISE this is a NARCOTIC & is ADDICTIVE I have never ha any issue ever just took prior to bed only. So Bum exercises & have a chat to your Doctor about above but not to be abused.

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