Hello, I may have already posted my two cents but I have had a few bouts of PI since 2001 when I had a proctocolectomy and pouch construction.  Shortly thereafter the pouch was hooked up I developed COPD. My doc at CCF said 30% of his patients also have COPD - another autoimmune disease.  

I follow the microbiome diet (Robyn Chutkan, The Microbiome Solution).  My pouch has been perfect since I changed my diet.  I'm also in a mindfulness group, walk 2-3 miles a day. So the whole package seems to be working to keep my pouch calm.  

I hope this helps.  All the best.

Joanne

I have been feeling much better on 250mg Cipro in the morning and 250mg Cipro and Flagyl at night.  Lomotil and 1%Tincture of Opium in smallish doses.  I'm just off a five day fishing trip; I could not chance being sick (fishing boat bathrooms NOT approved for people like us!).  I was careful on what I ate and limited the amounts.

Today, I will stop the antibiotics; keep on a strict SCD/Whole30 type diet. 

I've failed (gotten sicker) everytime I stop/challenge the meds. 

Now that I have a 'scorched earth' gut bionome; will try to rebuild a better bacteria flora. fingers crossed! 

Perhaps I am insane (doing same and expecting different results), but this is not a fair fight and I'll keep trying.  LOL

Good health to all!!!

Mike

Joanne posted:

Hello, I may have already posted my two cents but I have had a few bouts of PI since 2001 when I had a proctocolectomy and pouch construction.  Shortly thereafter the pouch was hooked up I developed COPD. My doc at CCF said 30% of his patients also have COPD - another autoimmune disease.  

I follow the microbiome diet (Robyn Chutkan, The Microbiome Solution).  My pouch has been perfect since I changed my diet.  I'm also in a mindfulness group, walk 2-3 miles a day. So the whole package seems to be working to keep my pouch calm.  

I hope this helps.  All the best.

Joanne

Thanks for this.   I actually saw Dr.Chutkin twice.  She is a FODMAP //VSL3 believer.   I will credit her as being the first GI doc who espoused dietary control of my symptoms!

I couldn't stay true to the diet and wasn't offered any practical advice on how to self-administer a homemade VSL3/Cocunut oil enema (sounded easy in the office; not so easy in my kitchen (cocunut oil had to be heated as to mix the VSL3 in).  I believe my attempts caused a fissure which still hasn't healed.  She wasn't that 'practical' in my opinion.  The $700 cash/cc payment//no insurance accepted per visit was another issue.

The book she referenced was Dr. Martin Blaser's, "The Missing Microbes".  I know she just finished her own second book.

I put up a post in 2014 on my experiences with her FODMAP protocol.  The theories are inline with what I'm trying recently.

I am grateful that you have had success with this!!!

In am also taking Humira. (6 months- every 2weeks dosage) It is difficult to know how it is helping. My GI says it combats the inflammation. I still have cramps/urgency and leakage so not answer to all problems, I also take extra strength Visbomme probiotics daily. Wonder if they makes matters worse? I have pouchitis frequently  treated with cipro and flagyl, which work until I stop taking them, and the cycle starts again, until it gets do bad I get desperate enough to go back on them. They work instantly, but afraid they will stop working with overuse. And they make me feel terrible.   Worst part of my jpouch is the leakage. I have to wear pads all the time and diaper at night. When I lay down, gas lets out and oozes poo. Absolutely no control! I am contemplating removal of pouch. Going to have my scope soon to see if its ok structurally.   Anyone have this leakage problem? I try to empty pouch but rarely can.  Sometimes the urgency comes and I can only poop a tiny bit. Only to have to go back again. Many many times!  Sore behind. Laying down oozes out,   On  good days I have productive toilet trips, but still leakage,  ugh

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