AIP (Autoimmune Protocol) and Whole 30 diet for rotten Pouches??

I'm in the same place! Started SCD. https://www.nimbal.org/

https://youtu.be/GCVrAuTnVIw

Settle Childrens Hospital-nimbal website

YouTube video explains why diet works for some and role of medication 

I have taken antibiotics so long they have stopped working ��

My biggest dilemma is that (in theory), I do not have colitis anymore.   Therefore, the auto-immune problem is not there anymore.  

The Pouch, for example, does not respond to prednisone; while, it always stopped my UC in its tracks.  These diets are all auto-immune specific.

Thoughts??

Problems with pouch are related to to microbes being out of whack and these diets help that?

https://symbiosisonlinepublish...ctiousdiseases22.php

Has your GI suggested any treatment options beyond antibiotics and steroids? Since colon removal is a treatment but not a cure for UC, an IBD specialist would usually try throwing other medications at chronic pouchitis before recommending surgery.

winter wish posted:

Problems with pouch are related to to microbes being out of whack and these diets help that?

https://symbiosisonlinepublish...ctiousdiseases22.php

That was an interesting read, thank you.  I hadn't realized that Crohns had a bacterial component to the problem.  I guess since we are working with our Ileum for the Pouch, seems a Crohns diet is worth a shot!!

I assume the Nimbal dietary suggestions help with this.

Thank you for your suggestion and input....This was helpful.

I am going to give it my best shot also, I only have my pouch to lose which involves major surgery... let me know how you get on! Below is a link to food list

http://www.breakingtheviciousc....info/legal/listing/

bowelsofhell posted:

Has your GI suggested any treatment options beyond antibiotics and steroids? Since colon removal is a treatment but not a cure for UC, an IBD specialist would usually try throwing other medications at chronic pouchitis before recommending surgery.

Thank you.

Yes, the GI docs tried: Canasa suppositories  and other 5-ASA drugs ; no success (note- the sulfasalazine and other 5-ASA related drugs never helped the UC, at all, while I still had the colon).

(I lived in Japan for a year: their treatments ((probiotics; and 'Irribow' medicine (action is through the gut's seratonin receptors) and anti-cholinergics ('Thiaton')).  No joy. 

Tincture of opium helps just to slow the loose stools. 

Immodium and Lomotil also pretty useless.

The GI doc eventually threw his hands up and I've been seeing the Colo-rectal guy since.

I've been through the VSL3 mill (both oral and through a homemade enema); zero results.

Apparently, I fall into that 10% category that has lingering problems.  I read the biopsy from the original surgery.  There was evidence of 'backwash ileitis'.

Unless they are missing some other protocol, I'm getting desperate.

Thanks,

Mike

winter wish posted:

I am going to give it my best shot also, I only have my pouch to lose which involves major surgery... let me know how you get on! Below is a link to food list

 

http://www.breakingtheviciousc....info/legal/listing/

All the best.  I started the diet yesterday and will report back.  It is pretty much inline with the two I mentioned (but I like it is even more fine-tuned).

Heck, I gave up the colon; I'm going to fight to keep this thing.

It's very fine tuned! Gosh will take full willpower not to stray! 

My surgeon is dragging his heels about taking out pouch, beginning to thing to trying to avoid me! My GP has not had any correspondence back from him. 

Fingers crossed 

winter wish posted:

It's very fine tuned! Gosh will take full willpower not to stray! 

My surgeon is dragging his heels about taking out pouch, beginning to thing to trying to avoid me! My GP has not had any correspondence back from him. 

Fingers crossed 

You are correct on your first comment.  I am undisciplined, so will be a challenge.  My wife and a chemist friend of mine are assisting me!  The guy works in the foods-related industry.  He explained natural chemicals in foods which are known gut irritants and inflammatory to the body.  He agrees with these diets.

I'm sorry you are facing your own dilemma.  Taking out the Pouch is a frightful thought (for me).  It's a big decision to make.  I will try the diet and report back. 

Perhaps you may want to try a paleo-type diet which is a little easier first?

Al the best,

Mike

Previously tried Paleo, feel I may have tried every other diet. I went on big shop yesterday and printed off some recipes from www.nimbal.org 

https://youtu.be/ItqVyzUakVo

Watched Elaine Gottschall YouTube clips. I was using kefir, think it may not have helped (scd doesn't recommend it as it feeds bad bacteria also!)

best of luck!

winter wish posted:

Previously tried Paleo, feel I may have tried every other diet. I went on big shop yesterday and printed off some recipes from www.nimbal.org 

https://youtu.be/ItqVyzUakVo

Watched Elaine Gottschall YouTube clips. I was using kefir, think it may not have helped (scd doesn't recommend it as it feeds bad bacteria also!)

best of luck!

This was exactly the video my chemist friend first sent me!!!  It helps his type 2-diabetes as well.  He actually liked the SCD (as I shared the NIMBAL site with him) in theory.

Fingers crossed for you!!!   Peace and good health.

Mike and Winter Wish, I hope your dietary experiments provide you both with some much-needed relief, and that you'll update your progress your here. But if the opportunity ever presents itself for you to seek additional opinions from other doctors, I also hope you jump at it.

A few months ago I switched GIs because I was suffering terribly from pouchitis and my doctor didn't take it seriously. We're talking 15 to 20 trips to the bathroom each day, alarming weight loss, dehydration repeatedly requiring IV fluids, and my doctor was strangely uninterested (though she did check for cancer). She said to eat more bananas to raise my potassium and I'd feel better. At that point it didn't matter what I ate, I didn't seem to be absorbing much of anything.

At the urging of my other doctors, I switched to an IBD specialist at a big academic center who is more familiar with pouchitis. Antibiotics and steroids didn't help much, so I just started Humira and am still waiting to see if it makes a difference. If insurance hadn't approved it quickly, I too would've tried a restrictive diet out of desperation. I've tried SCD in the past and felt more energetic but it didn't improve my symptoms or labs.

bowelsofhell posted:

Mike and Winter Wish, I hope your dietary experiments provide you both with some much-needed relief, and that you'll update your progress your here. But if the opportunity ever presents itself for you to seek additional opinions from other doctors, I also hope you jump at it.

A few months ago I switched GIs because I was suffering terribly from pouchitis and my doctor didn't take it seriously. We're talking 15 to 20 trips to the bathroom each day, alarming weight loss, dehydration repeatedly requiring IV fluids, and my doctor was strangely uninterested (though she did check for cancer). She said to eat more bananas to raise my potassium and I'd feel better. At that point it didn't matter what I ate, I didn't seem to be absorbing much of anything.

At the urging of my other doctors, I switched to an IBD specialist at a big academic center who is more familiar with pouchitis. Antibiotics and steroids didn't help much, so I just started Humira and am still waiting to see if it makes a difference. If insurance hadn't approved it quickly, I too would've tried a restrictive diet out of desperation. I've tried SCD in the past and felt more energetic but it didn't improve my symptoms or labs.

Will do.

Please, also, share your Humira results.  I was wondering if the Monoclonal antibodies (like Remicade, Humira, or Entyvio could help an errant pouch).  No doctors I've encountered gave it much thought.  Go for it!!!

Remicade was brand new (and one of the first of its kind) and only FDA approved for Arthritis at the time I was losing the final UC battle. 

I had three infusions (after much battle with my insurance co.)   First one worked ok; second one less so; third one, nothing.  The J-Pouch surgery followed after a desperate attempt at Accupunture....slept a little better; no relief in the gut!

looking forward to sharing notes.

Thanks,

Mike

I take Slow k (potassium tablets) everyday, it makes such a difference! 

Looking foward to feedback! Hope you find something that works! 

L

The slow-release potassium tablets didn't work for me, but I hope to try it again once my pouch has calmed down. Currently I'm stirring several potassium powder packets into water twice a day. It tastes unpleasant but is much better than having an IV.

Mike,

I think we are still considered as having an auto immune disease even though our cokons have been removed. You were talking about that in a diet post above.

I had to have my j-pouch removed and have a perm ileostomy. I did everything that I could to try and save my j-pouch which I think you have. I just wanted you to know that there is a better life without a sick j-pouch.

Definitely I developed autoimmune inner ear disease years after pouch formed. 

TE Marie posted:

Mike,

I think we are still considered as having an auto immune disease even though our cokons have been removed. You were talking about that in a diet post above.

I had to have my j-pouch removed and have a perm ileostomy. I did everything that I could to try and save my j-pouch which I think you have. I just wanted you to know that there is a better life without a sick j-pouch.

Thank you.   Yes; I agree the auto-immune component is still alive and well.

It appears these diets target to get the correct' bionome back in the gut.

TE Marie, you have gone to my Plan B if the diets fail.  It's a scary thought.  I'm glad it has worked out for you!

q- Is the permanent ileostomy any better than the loop one I had, in-between the 2-stage J-Pouch surgery??

thanks very much.   It is a big help to know there are others (not doctors) who truly understand and can share experiences.

peace,

mike