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What therapies have you tried and did they have any effect?

I I have red book by Jini Patel Thompson called "listen to your gut." It is about healing ulcerative colitis ,Crohn's, diverticulitis and IBD. Unfortunately I didn't read this book before I had my colon removed. However I use a lot of the principles from it to help me with bits of my daily life now.

I have had a couple of episodes of pouchitis and have used a combination of wild oregano oil, psyllium, bentonite clay and a soft diet that is easy to digest. I have cured the pouchitis both times without the need of antibiotics. I just have started another episode of pouchitis so I will be interesting to see whether it works again this time.

I feel that for me there maybe a link between candida and pouchitis. I feel that if I feed my gut with sugar or carbs this makes everything worse. So I go sugar free and massively reduce my carbs and then try to get the candida under control. This includes using high strength probiotics. I wonder if anyone else has any ideas that don't involve antibiotics?

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I take 800 mg of egcg green tea extract which was recommended by my doctor. I take it daily for the past year.

I have used charcoal tabs (no help) licorice extract (helped for awhile) marshmallow root and slippery elm ( no noticeable help) and acupuncture (lots of help).

This site has a couple of oregano oil threads here that might be helpful to research.

Just in case anyone is interested I’m about a week on in my personal treatment of my pouch-itis and it’s working again.

I don’t know about anyone else but I seem to have a short memory for the pouch-itis. Once I feel well again I gradually add a few indulgences that I probably don’t need e.g. alcohol sugar and  carbs. When I get a flare up  of pouchitis, I remember that I wasn’t supposed do these things with wild abandon. Anyway I’ve had a timely reminder that I need to take better care of myself.

One thing that I am wondering if anyone else experiences is, that the first symptom that I get with my pouch-itis are  chronic headaches and migraines. Having said this I am very susceptible to headaches and migraines. I also had an unbelievably sore tight back between the shoulder blades and neck. I wonder if this is an unusual reaction to pouchitis but to me it just indicates a level of inflammation in my body? Does anyone else experienced this?

Anyway this morning is the first morning I’ve woken up without a cracking headache and I didn’t need to get up in the night to go to the toilet. To me this is an indication that I am definitely on the right track now. This time I need to keep it up a bit longer and better.

My regime is to cut sugar carbs, alcohol, coffee and take wild oregano oil that is in a base carrier oil with some water approximately three times a day. I often alternate this with olive leaf extract in water. Then in the evening before I go to bed I take high strength probiotics. I certainly have to live through a fair bit of discomfort until it starts to work again. However I really don’t want to get stuck on the antibiotic roundabout so for me putting up with feeling pretty awful is definitely worth it. I’m worried that if I keep blasting my body with antibiotics any Microbiome that I have worked hard to improve will just be obliterated. I was on steroids for so long that I couldn’t get off them before my surgery and I’m afraid that the same thing could easily happen with antibiotics. I totally understand how this happens and that for most people they are a bit of a lifesaver but I want to explore other before going to antibiotics.

Last edited by FelixGust

I have chronic pouchitis and have been on the "antibiotics roundabout" for many years now.  I was on 2 x 875mg of Augmentin, 5 imodium (barely did anything) and two pepto tablets (not sure if this helped) for the past year with decent results until this combo's efficacy wore out.  I also started Entyvio 3 months ago and recently had my 4th infusion.

My doctor recently went on maternity leave and a new doctor stepped in and pulled me off my current drug regimen and put me on 2 weeks of Cipro (ends tonight) and 4 weeks of Budesonide 9mg.  I saw results about 2-3 days after starting the new drug regimen but the past few days everything has gone south again.  I'm starting to believe it's my sugar intake.  Just a gut feeling (lol) but I've been really bad lately about eating sugary foods and carbs and now I have the urgency and the burning and the blood from wiping so much.  My new doctor was surprised that the Entyvio hasn't taken hold yet, and so am I.

Has anyone been on Entyvio and seen results way past 3 months?  I have a 6k deductible before I get full coverage on my insurance, which I've now met thanks to $1600 per infusion and a recent pouchoscopy so I don't mind continuing to get infusions.  I just hope they start to help.  The 800 mg of egcg green tea extract sounds interesting.  I might give that a try as well and have also thought about acupuncture.  Hope I didn't hijack this thread by talking about Entyvio.  I figured it might be considered an alternative therapy since antibiotics have been most folks' main therapy. 

Just having my third infusion next week was shocked how much you have to pay my private insurance doesn’t cover it but the government does I only have to pay 5 dollars per script I also get a nurse that come to my home to do the infusion I am desperately hoping it works. I am in Australia been on antibiotics for around two years now .

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