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

The permanent ileo is much better than Loop I had between my j-pouch surgeries. The loop was so bad I was hospitalized 16 days after the first surgery. I kept getting dehydrated due to excessive output. They did the reversal surgery as soon as possible 8 weeks after the 1st surgery. I really didn't want an ileo again! I am glad this perm one is so much better.

There is a Forum here on Ostomy. You might want to read past posts there and/or ask any questions you have about the surgery, ileo or recovery.

I wish you the best.

Paulette

I have faith in FODMAP diet, I tweek it to my needs because I am also lactose intolerance and  have SIOB. My original dx was ulcerative colitis.   I just had my scope 2 weeks ago and my pouch is healthy.  I said this before diet is everything.  Exercise, yoga, strengthening muscles.  I all connects.  I start Enteragam.  This medically food product.  It took about 4 mos to kick in but it's working.  Feeling good. 

Three weeks + on elimination>>introduce-back dietary program.  No dairy, no added sugars, no grains, no fruits....etc...etc...  If you look into the various Auto-Immune protocols, your head would spin!  I'm not giving up yet; but, burnt out!

No joy yet.  I'm starting to believe the doctors that (in my case) diet is not the cause/answer to my pouch problems.  I cannot constantly be running food algorithims in my head to figure out what is/what isn't a food trigger as there seems no rhyme nor reason to when I get an attack (which is 5/7 days on average).  Perhaps too much roughage in these vegetable-centric diets?

Frustrated and wished I would have stuck to Prednisone and UC.........

I know, my dilemma totally! I feel like I have tried too many diets, my family have to ask “what am I eating now!” 

Because I am on a waiting list to get pouch removed, so I will try anything in interm! I’m just giving the SCD my best shot, mainly because so my GIs in US have incorporated it into their practice.. 

SCD, using breaking the vicious cycle and nimbal websites. I nearly feel like I’m going to end up with an an unhealthy eating pattern  trying to figure out what to eat! 

I feel that all the immunosuppressants, steroids and antibiotics taken have probably distroyed my gut bacteria and maybe a fecal transplant is what we need? Yep no getting that  colon back.. 

hopefully the SCD diet will sort out the gut bacteria 🙏

Are you guys using probiotics? Maybe that is part of your diets. 

Hi.  I've been through the probiotic mill, with no success.

VSL3 made no difference for me.  I used it both orally, in enemas and both methods together    No change for me.

A Japanese GI doc used an analogy that, 'it's like throwing salt in the ocean' upon asking their opinion on the subject.

I'm drinking Kombucha along with the elimination diet.  

So far, the diet is failing me.  I can't even sit down this morning.......

Tried VSL#3 also no luck. Also kefir.

Hopfully the SCD will help microbiome. In breaking the vicious cycle it mentions that kefir may not help because it feeds the bad bacteria also. 

I'm sticking with SCD and the AIP; being ultra conservative and strict.

the cramping and butt burn have been horrendous in the past three of five days

Maybe stop the kombucha? It’s not SCD legal

winter wish posted:

Maybe stop the kombucha? It’s not SCD legal

Really???  All it is is fermented tea and only 1g sugar per serving.

I thought is was made from seaweed (not good on the list); but only from tea leaves.

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.

Hi   Has the Humira had any effect?   I hope u are well,

Thanks...Mike

Gosh Looked again Kombocha tea is ok. Unless you try Settle Children’s Hospital stage 1: www.nimbal.org

Hi, Mike! I'm sorry to hear you're still suffering. I've finished my loading doses of Humira (four injections during round one, two in round two) and will have my first regular dose early next week. 

Some aspects of my joint pain improved quickly but it's only been over these last few days that some of my GI symptoms have started to change. For three days in a row I've made single-digit trips to the bathroom, the longest stretch of good fortune I've had in nearly 18 months.

Urgency has improved and the pouch seems less agitated in general. I'm less nauseous, probably because I'm not as dehydrated. Is the Humira responsible or is it a coincidence? It's too soon to tell. If improvement continues, I can start tapering off the prednisone (which hadn't been working, but the GI was reluctant to discontinue) next month.

Probiotics never did much for me, either. Sometimes when I tried a new one I would think for a week or two that it was working, but nothing changed long-term. Were they effective only fleetingly? Was the improvement only in my head? Who knows. I'm envious of those who swear by it.

Moving forward, what are your diet plans? Will you give this current diet a certain amount of time and then try another?

That’s great that Humira is helping, fingers crossed! This is definitely the last diet, I think I have tried all others!

bowelsofhell posted:

Hi, Mike! I'm sorry to hear you're still suffering. I've finished my loading doses of Humira (four injections during round one, two in round two) and will have my first regular dose early next week. 

Some aspects of my joint pain improved quickly but it's only been over these last few days that some of my GI symptoms have started to change. For three days in a row I've made single-digit trips to the bathroom, the longest stretch of good fortune I've had in nearly 18 months.

Urgency has improved and the pouch seems less agitated in general. I'm less nauseous, probably because I'm not as dehydrated. Is the Humira responsible or is it a coincidence? It's too soon to tell. If improvement continues, I can start tapering off the prednisone (which hadn't been working, but the GI was reluctant to discontinue) next month.

Probiotics never did much for me, either. Sometimes when I tried a new one I would think for a week or two that it was working, but nothing changed long-term. Were they effective only fleetingly? Was the improvement only in my head? Who knows. I'm envious of those who swear by it.

Moving forward, what are your diet plans? Will you give this current diet a certain amount of time and then try another?

 

Since the strict diet protocols caused too much acidic outflow; I switched gears.  The butt burn was too much to bear and diet wasn't quite working anyways.

Yesterday, I ate modestly and did have some better quality (no preservatives; good flour) white bread and some white rice.   Theory was to absorb some of the acidity   For dinner, had chicken satay (no added sauce) and Thai BBQ chicken.

All good from mid-day yesterday through this morning.

all of these diets are designed for people with colons (just not enough of us Pouchies yet?) and to fight Crohns and Colitis.   My experience is that without the colon; the landscape is different!!!

I will use the knowledge/suggestions in these diets as a guide and not a rule.  

in Cipro and Flagyl, I must trust for now!.

250mg of each 2x per day   Will taper to once a day and then to none and see what adventures lay ahead.....

Cipro and Flagyl have stoppped working for me... 

winter wish posted:

Cipro and Flagyl have stoppped working for me... 

Sorry.  They have their ill side effects.

they do (still) work for me.

How is your diet coming along?

lesser of the evils for us each!

It’s going good, but can’t deviate at all! Eating out is very tricky... I just need to get properly organized so that I have the right foods stocked in... 

I’m afraid that if I get an ileostomy that I will still have problems ie emptying bag alot🙈

hope you are feeling a bit better 

Winter Wish,

I had my j-pouch removed and don't see a correlation between emptying it and j-pouch performance. Without the j-pouch it all depends on our small intestines. You might want to look in the Ostomy section here to see discussions or ask questions  about end ileo's. 

I'm impressed you are able to manage your problems with your diet. I was never able to do so. 

Checking in to ask how everyone's doing. I'm still in the cautiously optimistic "wait and see" stage with the Humira. Now that the loading doses are done and I'm getting the standard dose, I've noticed a slight increase in frequency and urgency these last few days before my next injection. Prior to that, things had really slowed down. It might be a fluke, or an early indication that a higher dose is needed. 

Last time I injected, a site reaction rash lingered for quite some time afterward. The GI is checking my Humira antibody levels and hopefully those come back fine, because I'd really like to be able to stick with this treatment for now.