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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 .

I take probiotics everyday and it doesn’t seem to help me either. I’m on a high protein diet low carb and I have the worst pouchitis ever! Has anyone tried a supplement for leaky gut? I just ordered some? I’m on Flagyl right now and it’s not helping like it used to? Any thoughts? I’m thinking about getting off this diet?

I am currently trying a new diet and it's fairly extreme but I'm having some really good results. It's called an elemental diet and you get all of your nutrition via shapes that are in elemental form and easy on the gut. They give your whole digestive system rest to heal the mucosal lining., address and malabsorbption issues and booster the immune system.  In between shakes I take another concoction called mucosal heal in a little bit of water. If you want to read more about this as the possibility then I would recommend buying online the IBD remission diet by Jini Patel Thompson.  It is not very expensive and it's an interesting read for anyone who wants to get off the usual drug regime.

My doctor started me on Mesalamine enemas and after three days, things are off to the roughest start ever.  It's as if I'm taking nothing for my pouchitis.  I have all the fun symptoms such as urgency, pressure, frequency and BURNING/RAWNESS/SORENESS.  Can't function at work, can't sleep.  Life is pretty much "in the toilet" at the moment. 

Is the thinking behind Mesalamine suppositories/enemas that the pouchitis is a manifestation of Crohns/Colitis and so treating it should be with related drugs?  I remember taking Sulfasalazine when I had UC.



Got a link to the Olive Leaf Extract Oil you're taking?

Last edited by FreeAtLast

Mesalamine is commonly used to treat cuffitis. It might be used if cuffitis is suspected, and maybe if pouchitis is thought to be a Crohn’s manifestation, but it doesn’t usually do much for pouchitis. It wouldn’t be expected to work in three days, though - that’s too soon to judge the effectiveness of mesalamine.

I had a pouchscopy and was diagnosed with acute pouchitis which was then put on mesalamine suppositories once at bedtime. It did take a little over a week to start noticing improvement in symptoms. The urgency was the last to subside from the symptoms I was having. I posted the link to the olive leaf extract I use for those who want to look into it.

During my 6 years post-op, I've had one bout with pouchitis that I treated with an antibiotic.  Since then I've just upped the amount of wild oregano oil I take daily and really haven't had any issues since.  I think the stated dosage of WOO on most products is 2-3 drops daily, but I'm filling an entire #1 capsule (way more than 2-3 drops) daily and taking it with breakfast.  If I'm feeling like the pouchitis might be creeping up on me, I'll take 2 capsules twice a day for 2-3 days or until I'm feeling right again.  It might not be a solution for everyone, but for me a *lot* of WOO is working very well.

Hi All!

My name is Karan and I am new to this group.

I had my total colectomy in 2015 due to severe UC and then my takedown in May 2016. Since then I have had pouchitis and they most debilitating aspect is the constant 'Brain Fog'/Headaches which I have every single day since 2017. No matter how well I sleep, I always have such a heavy head and I presume this is due to the chronic inflammation in my pouch). Does anyone else have this?

I have been on multiple rounds of Antibiotics and am on another round (Cipro and Flaggyl) for another month before my scope in November. They give me really bad constipation!

I focus on a Mediterranean diet so def mostly Carbs and cant seem to fix the brain fog which makes me so sleepy/confused. I eat 2 meals a day now to allow for extra rest. I take Symprove probiotics (probably all being killed due to the antibiotics).

I've been hearing a lot about oregano oil. Can someone please give me some guidance as I really don't wish to be on antibiotics.

Current supplements: Vitd3, Curcumin, Omegas, Symprove.

Any help would be appreciated right now. Thank you.

Last edited by Karan

Hi Karen, if you look up Jini Patel Thompson and Her book /ebook on Wild Oregano Oil protocol then this should give you the information you are looking for.

I find there is a direct correlation between headaches and migraines and pouchitis for me. Perhaps for you this is the brain fog. When my pouchitis is non-existent my headaches and migraines are at a minimum.

Anna

Hi Anna, I have been reading up on it and have purchased WOO yesterday (brand: solutions4health). Its the best one in Australia. I've had the pouchitis for 4 years now so not surprised the inflammation is causing other issues.

Can you please advise how you are going with the oils? I have been through this post and note you were on 12 drops per day? Diet wise what are you doing?

I feel like the passage between my anus and jpouch is narrowing. I cant empty or release gas whilst on the pot anymore and not sure what this is.

I am currently on 3 drops per day and following the usage dose on the back but starting very slow!

Any guidance is appreciated! Thank you.

Last edited by Karan

Hi Karen, like you I live in Australia as well. I noticed that most of the people who are on these posts seem to be in America so sometimes what they have available and what we have can be different.

My wild oregano oil use  varies depending on my symptoms. I must admit that I don't exactly measure out the quantities. What I have bought is called wild oregano oil the brand name is Oregavit and it's latin name is Origanum Vulgare. This is a pure 100% pure essential oil. It has a minimum of 86% carvacrol. This must be diluted in another oil otherwise it is far too strong.  It suggests you put 2 to 4 drops of this oil in 5 mils or 1 teaspoon of olive oil or coconut oil. I use these ratios to fill up a small bottle of oil. Then I use a little eye dropper to give me my daily dosage awesome

Perhaps when you start using it do it once a day for a few days just to see if you're ok with it.

Then you fill your mouth with a gulp of water and I get a little eye dropper and drop some of this diluted liquid into my mouth swirl it around and swallow it. You can have a burning sensation but it doesn't actually burn you.

If I have symptoms of pouchitis I might do this three to 5 times a day. However it is very strong and it is really important that it is also followed up with probiotics. So I tend to take my wild oregano oil early in the day and night time before bed I take my probiotics. As my symptoms improve I reduce the number of times a day that I use this.

The other product that some people find can be really helpful is olive leaf extract.

I would think it's possible that the passage between the jouch and the anus could be narrowing  or maybe it's just the anus. I think my gastroenterologist said that sometimes this happens and they need to do a little stretching. Perhaps this is scar tissue? I am not a doctor so I couldn't answer that section of it, Im just guessing. I do wonder if maybe the pouchitis has made everything so inflamed that this could be causing some of this issue?

I've just got to go and take my son somewhere so I'll try to reply a bit more later about my diet

Hi Anna,

The brand I am taking here in Sydney is called solutions4health  and it has a high % of carvacol. It is already diluted with organic extra virgin oil. I have started on 3 drops, 2 times per day. O basically put 3 drops in 250 ml of water and skull it. It does feel like a slight burn but totally doable. Is this the best way to do it? The 6 drops per day (morning and afternoon) is working for me fine.

1. Do you suggest I increase the dose?

2. What's the best way to take the oil since it is already diluted in oil?

3. I currently take "symprove" probiotic from the UK. I take it at 6am though which is the first thing I take. I then take the woo after an hour. Is this okay?

4. How many times should I take the woo? I currently take it twice per day (6 drops in total).

5. Do you currently take antibiotics? I am on both flaggyl and cipro but want to get off them asap!

6. How long does it take to work?

7. Can you please give me advice on diet?

I have a scope on Monday which will tell me what's going on.

Thank you so much!

Karan

Last edited by Karan

I started writing you a lengthy reply and the bloody site deleted it.

I wonder if you might like to send me a private message and maybe we can get in contact and have a good chat about it.

You can friend me on Facebook or send me a messenger request. my name is Anna Gust. There should be a photo of me sitting in a desert with my arms crossed and wearing sunglasses

Did you buy the eBook that I suggested? it will give you far more information on a good protocol for your body then I can give you. I think it only cost a couple of bucks. If you like what you read in it, you might be interested in some of her other books which address a whole lot of other issues to do with your gut including diet.

I have found it gives me a different lens to think about treating myself. I come from a family of medical doctors and have always had a very Western Medical lens. After nearly 30 years of constant sickness due to my ulcerative colitis and ever increasing doses of drugs that have all sorts of side effects which eventually lead to none of them working, I ended up having a total colectomy. I have had damage to my lungs, presumably from huge doses of long-term steroids and also suffer from chronic headaches and migraines. The gastroentorologist always prescribed more and more drugs and the neurologist wants to do the same. They can't give me answers about why I have ulcerative colitis or the migraines. So they treat the symptoms not the causes. I feel like I have been a guinea pig for the last 30 years. I now have decided that if I'm going to be anyone's guinea pig I'm going to be my own.  So far I'm having more success this way than I ever did by taking ever increasing quantities of drugs.

Hi Anna,

I had a look and she has quite a few books! Which one is the most relevant? I need help with both the WOO protocol and the diet (not sure if my current diet is helping or not!). I have also been a guinea pig trying different things but i really wish to avoid any further antibiotics and biologics (remicade etc). I know there has to be way to fix this and I am willing to try anything at this stage. I have my scope tomorrow and will be interesting to see what they find.

I sent you a private message as I dont have a facebook account (only instagram). How is your pouchitis now? As mentioned above, the constant headaches/brain fog is really starting to affect me. My gastro suggested one meal a day (OMAD) with a keto diet but not sure if thats the right way to go on about it as I will likely lose weight.

I didnt get a private message. If you want to email me  here is my email address annagust37@hotmail.com

Where are you in Australia?

I have her ebook that is called "The IBD remission diet" and it's really interesting to read. It will give you so many other ideas and options to try. I also have her ebook called "Wild Oregano Oil." To be honest I'd recommend both of them to anyone who has an inflammatory bowel disease.

They don't specifically talk about people who have a j pouch however I still think that an enormous amount of the information is relevant and makes a lot of sense to me.

The other thing you can do is look up some of her YouTube videos. She has videos on all sorts of different topics and you will get a feel for whether you like what she's on about and the way that she communicates.

Lately I have been playing with what I could call an elemental diet. She has lots of information about it in her book. I make up my own elemental diet. She makes pre-made shakes that you can purchase  however for me this seemed like an incredibly expensive option so I opted to buy all the ingredients and make them myself. The main difficulty with this diet is compliance because it's a really tough. However when you feel really sick that can be incredibly motivating. I only managed to stay on it completely for 8 days but in that time my migraines settled massively and I was able to go onto a half elemental diet which included some regular food.

I have toyed with Keto.as well.

grateful, that's a funny way of using the gel capsules. As you already bought them you can take one during a meal. As the food will remain some time in the stomach you can be sure the capsules will be dissolved by the acid there. For increasing the dosage if you feel ok with it have a look at the package.

If you want to switch to pure oil there are several recommendations in this post, or use the forum search (magnifier glass symbol in the header line) with 'oregano'.

Hi All,

I have been doing oregano oil with elemental diet for 6 weeks now and for some really strange reason, my Calprotectin levels have gone UP to 500!

I am following Jini Patel and using Natren probiotics, bone broth, elemental shakes and WOO for 6 weeks now for chronic pouchitis - my night time incontinence has stopped and my iron levels have stabilized. I am still eating 1 meal per day which consists of protein, fats and small amounts of carbs.

Has the Calpro levels gone up due to the body detoxing? I am currently on 12 drops per day (6 drops twice per day).

Regarding oregano oil, I bought it at the recommendation of some people in the group. I bought capsules from the brand ReThinkOil. They actually made me feel a lot better and I thought it might have fixed my pouchitis, but then I went for a routine pouchoscopy and was told I still had severe pouchitis, which I was disappointed to hear. So far I've always had to take antibiotics to get rid of it. I hate Flagyl, it leaves a terrible taste in my mouth, but this time I got Xifaxan and had no side effects.

Hi so I have my pouch over 20 years now and pouchitis from day 1.

I have tried everything listed here plus making my own kefir and fecal transplant. Damn pouchitis would always come back, in fact 6 years ago I had to disconnect I was so sick. No antibiotics would work.
so it was lose my pouch or try Entyvio. Remicade almost killed me. I cried and cried but I was not losing this pouch. Here I am 6 years pouchitis free later and still going strong. Good luck. I have some friends that never had pouchitis. I’m one of the lucky ones I guess.

@FelixGust posted:

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?

How much of each (wild oregano oil, psyllium and bentonite clay) do you take?

I  use psyllium everyday. I often make-up shakes that I drink 2 or 3 times a day and I put about half a teaspoon in each of these shakes. The psyllium helps me not to have constant diarrhoea and to bulk up the store store.

The wild oregano oil varies depending on my symptoms. I will copy and paste a little bit of information from one of her books for the IBD remission diet. She also has a small publication you can get online call the "Wild oregano oil protocol" and this will give you far more information

WILD OREGANO OIL • If you sense you also have an intestinal infection (and if you have IBD or IBS you are highly likely to) you will benefit greatly from using Jini’s Wild Oregano Oil Protocol to kill off these pathogenic microoorganisms like yeast, fungus, bad bacteria, mycobacteria and viruses. In that case, you would do Jini’s Wild Oregano Oil Protocol first and then follow with the high dose probiotic supplementation. This will kill the pathogens much faster than just using probiotics alone.

Wild oregano oil is an extremely potent natural anti-bacterial, anti-yeast, anti-fungal, anti-parasitic and anti-viral substance. It is extracted from a particular species of oregano that grows wild in rocky regions of the Mediterranean and has only been used in North America since the early 90s, when Dr. Cass Ingram published his landmark book on wild oregano called, The Cure is in the Cupboard. As such, it is a relatively “new” herbal medicine in the US and not many naturopathic physicians are even fluent in its uses and amazing efficacy. I expect it will gain momentum quickly in the coming years and like all really effective herbal medicines the Food and Drug Administration (FDA) will probably try to ban it before too long!

Most of the scientific research on wild oregano oil is currently coming from the Applied Microbiology field in the area of food preservation. Microbiologists have found that wild oregano oil is so powerful that even minute amounts of it can kill common food-borne pathogens responsible for a lot of the food poisoning incidents with processed food. When I first introduced wild oregano oil to my readers back in 2005, its use with gut disorders was not widespread. However, since then, among my readers alone, thousands have tested and used this herbal extract to rid themselves of intestinal infection. I have used it on myself and my children since 2002 – and I can personally confirm its efficacy for a wide variety of applications involving infectious microorganisms. More recent research has even confirmed wild oregano oil’s ability to eradicate mycobacterium avium paratuberculosis (MAP) – an extremely tenacious pathogen that has been identified in up to 92% of Crohn’s patients (see Appendix B for references).

What To Look For in a Brand

It’s very important to use the correct species of oregano, as different species contain different levels of the principle active ingredients: carvacrol and thymol. Please follow the specifications here to ensure you get the desired results and don’t substitute brands unless they can meet the same criteria (confirmed via an independent lab assay), or you will not see the same results. When purchasing wild oregano oil, make sure you get:

Species: Oreganum vulgare

Subspecies: Hirtum is one of several that work well

For wild oregano oil to be effective, it must be high in naturally occurring carvacrol (ideally 75% or more) – not just have extra carvacrol added in later. If you get a brand with the correct species and subspecies, this will not be a problem. Effective, good quality wild oregano oil should also be low in thymol. Thymol is a naturally occurring compound in oregano oil that must be present as it works synergistically with carvacrol. But, too much is hard on the liver, so check that levels do not exceed 5% maximum. For my brand recommendations, see my LTYG Shoppe.

The dosage given for wild oregano oil in this Protocol is for oregano oil that has already been diluted in a carrier oil (most brands are) like olive oil. Five drops of diluted wild oregano oil is equivalent to one to two drops of pure, undiluted, essential wild oregano oil. If you’re using a brand other than the ones recommended here, check carefully to see whether it’s been diluted or is an essential undiluted oil. Remember to always dilute pure (undiluted, essential) oregano oil in a carrier oil before using internally or externally, or like all essential oils, it can cause tissue damage. The brands I recommend have already been diluted with olive oil, so you don’t need to dilute them further before using in this protocol.

Okay, now that you've got some background on wild oregano oil, here's how you need to take it to eliminate any intestinal infection. Wild oregano oil is also ideal for people with IBD as – although it feels “spicy hot” in the mouth – it is also an anti-inflammatory and is used topically with burn patients.

Jini's Wild Oregano Oil Protocol

• Take 10 drops of wild oregano oil, three to five times a day. I prefer taking it on an empty stomach for maximum efficacy, but it is not necessary. While on the elemental diet, you can take a dose and then 10 minutes later have a shake or some broth. For some reason, numerous readers have found the liquid drops work better than the gel caps – but you can use either. Again, you will need to ramp up gradually (start with just five drops, one to three times a day) and adjust the dosage and frequency to what your body can handle. As you clear pathogens, you will likely be able to handle more.

• Then, just before you go to bed at night (and a minimum of two hours after your last dose of wild oregano oil) take a full dose of probiotics: one teaspoon of each of the three probiotic powders (Megadophilus, Digesta-Lac, Bifido Factor). Extensive experimentation by myself and thousands of readers has shown that you need to combine wild oregano oil with probiotics to get the best results and also avoid unpleasant side effects – so do not skip this vital step.

• Continue on this dosage protocol for three weeks (or longer if your intuition guides you that way), then implement the probiotic supplementation outlined above. If you have a tenacious infection (like mycobacterium avium paratuberculosis – MAP) you will likely need to cycle on and off this protocol every three months or so, for up to two years. So let your body be your guide. The Easiest Way To Take Liquid Wild Oregano Oil Wild oregano oil feels “spicy hot” when you swallow it (or when it touches any mucous membrane). So, the best way to take it is to first take a sip of water and hold it in your mouth, without swallowing. Fill the dropper with 5 to 10 drops of wild oregano oil, tilt your head back and shoot the contents of the dropper into the mouthful of water at the back of your throat. Swallow. Then immediately follow with lots of water or juice, and keep drinking water till the heat sensation disappears (about 10 seconds). Even my daughter, Zara, could take liquid wild oregano oil using this method when she was only five years old. In fact, you can watch Zara demonstrating the easy (no burning!) way to take wild oregano oil in this video:

http://www.youtube.com/watch?v=7ryheQSdYHc (Or go to YouTube and type in “Jini Patel Thompson” and it will pull up my channel.)

Alternatively, if you like a hot burning chili sensation, then just shoot the five drops directly into your mouth and enjoy! Remember though, that wild oregano oil is anti-inflammatory and used with burn patients, so although the herb presents in this “hot” way, it’s true action is more complex and healing/soothing. Warning: Do NOT use Jini's Wild Oregano Oil Protocol unless you follow it with the probiotic supplementation described above. If you kill off all the pathogens in your gut, but do not replace them with good bacteria, you run the risk of opportunistic infection. Your Candida albicans (yeast) population will also explode in the absence of good bacteria to keep it in check, so you must follow with therapeutic-quality probiotics at a high dosage.

Hi, I am wondering how you did with your pouchitis after taking the oil of oregano, clay and probiotics? I am hoping to avoid another biologic for my recurring pouchitis and fistulas.

I have been on the oil of oregano and natren probiotics for 6 weeks but recently had to take cipro/ flagyl for 10 days which worked only while I was on them.

I just started taking diatomaceous clay and humic fulvic acid as recommended by a Chinese medicine DR.

I have been following scd diet (as much as I can) and possibly lower my fructose intake as well for a while.

Any updates are much appreciated! Thanks

I think it's really hard to compare like-for-like when we are all doing different things with our diet. The first time I tried this protocol I did a really intensive regime with the oregano oil of taking it 5 times a day for a number of weeks and probiotics at night just before bed. At the same time I went on an elemental diet to get all of my nutrition in a liquid form that was very easy for my body to digest. This gave my bowel a rest.

There is a whole booklet on elemental diets that Jinny Patel Thompson wrote. You can either buy her products which are really expensive or she gives you all of the ingredients in this book so that you can source them yourself and make them up, which is what I chose to do. The difficulty is that it is incredibly difficult to stay on this diet because food is such a huge pleasure in our lives and the willpower needed to not eat anything is quite intense.

My subsequent efforts have not been nearly as effective because I find it very mentally challenging to put myself back on a complete elemental diet. So I opt for a half food half elemental diet. Unfortunately I still suspect this seeds my candida Overgrowth to some extent. If I get really bad I will then have the motivation to go back onto the full elemental diet. Being really sick can be very motivating in that way

@katenet posted:

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.

Hi Kate,

Are you still taking EGCg?  Do you think it helps?  800 mg is 2x the amount they say to take on the bottle.  What is your weight?  I'm contemplating starting this regimen and I wonder if I would take the same amount as you?  I weight about 110 lb.  Also do you take the 800mg at once, or 400mg 2x/day? 

Thanks!

Sara

@katenet posted:

I remain on the EGCG with really no impact on the pouch. I think it helps with my gum inflammation and mouth ulcers however I don’t know . Last pouchoscopy showed (stable) chronic inflammation-

EGCG can’t hurt it’s likely doing nothing but i remain optimistic

Thanks for your reply!  Do you still take 800 mg, and are you the same weight as me?  I don't want to cause myself liver damage, but I don't want to take such a small dose that it doesn't do anything.

It was actually information I was given from another I-poucher. He said it helped tremendously. To be honest I’m not surprised. Cabbage juice helps heals ulcers and reduces inflammation. I plan to try it. I just bought a juicer. I deal with bad pouchitis and always end up taking Cipro to get it under control. But, per usual, it comes back. The Cipro is destroying my Achilles tendon tho. Hurts just to walk on it. Not to mention all around a very hardcore drug. So if I can find something other than Cipro to help, I’m all for it!

Good luck with trying this remedy. I will be very interested to hear how you go with it.

Incidentally I find that for me, pouchitis  is very linked to my sugar consumption. I have managed to get rid of my pouchitus multiple x by removing sugar from my diet, using wild oregano oil and then supplementing with probiotics. I also avoid alcohol and stimulants as much as possible. As soon as I go off the bandwagon a bit and start over indulging I noticed the griping start sto come back.

I have taken Augmentin for pouchitis which doesn't have the risk Cipro does of tendon rupture. For me it was great and had no side effects. The pouchitis came back after I took it for 4 weeks but I'm still feeling better than I did before I took it. I may have to be a low dose long term. For me it's the best antibiotic. Flagyl gives me a bad taste in my mouth and Xifaxan doesn't work. The oregano oil also makes me feel better but doesn't cure pouchitis.

@sudie posted:

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 .

Hi there I hope you are well and have found a good solution for the pouchitis. I’m an American now living permanently in Australia with a Jpouch and have been on Cioro now almost since I have been here never had pouchitis until I moved to Australia. I’m just wondering what the current situation here with biologic treatment for pouchitis as my GI said only course is antibiotic treatment here?  BLordy hate taking the Cipro and very afraid of long term side effects. Cheers Indy from regional Queensland.

Hi Indiana I’m from Brisbane Australia I have been on Entivyo infusions once a month since 2020 had extremely high inflammation levels just talked with my doctor last week with great results so starting this week will be on fortnight injection into stomach area will be doing it myself does not cost me anything as government and drug company cover it no more pouchitis feel great hope this helps Sudie

Hi everyone hope you could give me some advice! Feeling so anxious because this is such a trauma for me. Did my jpouch surgery 4 years ago and did all kind of medication that didnt work before my surgery..

I’ve had symptoms before that made me scared of inflammation but scopes before have not shown inflammation and I’ve also done calprotectin test before that hasnt been elevated. Now I had symptoms for about 1 month with a bit more urgency but mostly this pressure feeling. My toilet visits is a bit different but sometimes differ from day to day.

now for about a month I have more stomache ache and also a lower back pain. My calproctectin test result was a bit elevated also which it never has been before, at 122. Im so scared of inflammation now.

have you experience of this elevated calprotectin or pochitis? Which medication is usually used? Does it usually go away after one treatment?
has anyone advice on which diet that could work best for treating and healing pouchitis? Could you heal pouchitis naturally?

Thanks for the reply @Scott F , do you think its common for us with jpouch, that the antibiotic for a couple of weeks clears up the inflammation and it doesnt come back? Im asking because before my surgeries I tried a lot of medication, biologics and nothing worked… so my mind is already spinning on different kind of horrible scenarios…

I also got a question on antibiotics, are they doing anything good when we dont have a colon? As I’ve understood we could get SIBO if the bacteria we had in our colon ends up in the small intestine.. so dont understand how probiotics could be benefical for us then?

Capsules 2x/day for 10 days. The ones I take are from Gaia, I think. I take them to ward off viral infections after I have interacted with little kids I’ve never met before for my job. Usually they’re not even in the same town so it’s a different germ pool. I have applied the oil directly to a gum infection and it went away. Also for other skin infections. And inside the ear for ear infection. I have never been diagnosed with pouchitis or treated for it by an MD but I have had symptoms of it before. For me it goes away on its own. Maybe if I ate antibiotics for it I wouldn’t have to be so careful with my diet. Who knows?

@Brellis posted:

Thanks for the reply @Scott F , do you think its common for us with jpouch, that the antibiotic for a couple of weeks clears up the inflammation and it doesnt come back? Im asking because before my surgeries I tried a lot of medication, biologics and nothing worked… so my mind is already spinning on different kind of horrible scenarios…

I also got a question on antibiotics, are they doing anything good when we dont have a colon? As I’ve understood we could get SIBO if the bacteria we had in our colon ends up in the small intestine.. so dont understand how probiotics could be benefical for us then?

Most J-pouchers get pouchitis now and then (at least if they originally had IBD), and it generally responds quickly to Cipro or Flagyl (metronidazole). None of us had pouchitis before our surgeries, so previous experience with medications really isn’t related. Some of us do develop chronic pouchitis, but that’s generally treatable, too, and it’s best not to invent problems for yourself without evidence for them. Of course the antibiotics are doing good if they make the pouchitis (inflammation and symptoms) go away.

I don’t think anyone really has a great understanding of what leads to SIBO, though there’s plenty of unsubstantiated stuff said about it. The bacteria that proliferate in SIBO are not the same species as those in the recommended probiotics. I take probiotics every day.

I got my j-pouch in 1995. I was fine for a long time but about 5 years ago started getting pouchitis, but I'd take a 2 week course of antibiotics about once a year and it would go away. The past year or so I developed antibiotic-resistant pouchitis. I have taken Cipro (which I don't like to take because of the risk of tendon rupture which scares me), Flagyl (also don't like because it gives me a bad taste in my mouth), Xifaxan (didn't work) and then Augmentin which worked the first time I took it and then stopped working. I finally started the biologic Entyvio (an infusion) just this week, and am really, really hoping it works! I've tried oregano oil which made me feel better for a while, but a pouchosophy showed I still had pouchitis. If it makes you feel better, my inflammation levels have been in the 400-600 range, so I think 100 is not that bad, but I am not a doctor. I hope you find some relief soon! I think a lot of people do get good results from antibiotics. My doctor who I think is very smart said some people need to be on a low dose of antibiotics long term. I don't like that idea but I guess it is one solution (but then the antibiotics weren't working for me anymore).

Thanks for sharing this, you have a similar history as mine as well as the concerns. I have been taking Cipro alone at 250mg a day for 5 years as none of the others you mentioned except Flagyl which I also can’t stand the taste of either are subsidised here under the Public Health systemcovered and if available are cost prohibited.  As you mentioned the biologic Entyvio is a good alternative and just so happens to now be on the PBS here so with some luck I’ll get a go and try it also to get off the Cipro.  Let us know how you go please with your trial! All the best!

Last edited by Indiana

The taste of Flagyl was never a problem for me. There was a little metallic taste some hours after taking the pill, but only if I took the full dose. I was taking a small dose of both Cipro & Flagyl for about 3 years till recently.

Right now I started a new biologic therapy with Skyrizi. During a hospital stay due to a Covid infection (my first, the problem was not flu symptoms but diarrhea as usual, associated with weight loss, circulatory problems, kidney failure) in November I was recommended to stop Antibiotics. My GI doc had already suggested to try Skyrizi, so I agreed. For keeping inflammation (chronic pouchitis / ileitis) under control in the meantime, I was put on a prednisone medication. I also add a little budesonide in the evening for local effect.

My first infusion with Skyrizi (Risankizumab) was last week. It is a advanced med compared to Stelara (Ustekinumab) and applied for people with Crohn's (my current diagnosis is "colitis indeterminata", which is ok for me as it says nothing in detail and fits for this kind of post-UC inflammation).

Skyrizi blocks a certain inflammation mediator (IL23, while Stelara was blocking both IL22 and IL23 which is said to be a little counterproductive). The first 3 applications are infusions in 4 week intervals, afterwards you can use an applicator (subcutaneous injection) every 8 weeks. There are usually little side effects. It has already been in use for some years for treating psoriasis, the approval for Crohn's disease was just recently.

I hope that this med will work for me. Over the last 10 years I was already trying Remicade, Entyvio, Stelara, azathioprine, Xelianz and adalimumab. None of them was really helpful, only antibiotics always worked very effective. Yet my liver labs were strongly elevated during the last years when I took antibiotics daily. Right now I'm relieved that they have almost normalized, within some weeks only.

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