Solving pouchitis!

Glad your okay and are doing well. Thank-you for posting this by the way!!! I am sure other people will appreciate this too like me.

I am fortunate enough to have never had pouchitis in my  7 years of having a pouch. **Knock on Wood** lol. I hope I never do.

Congratulations on 10 years I hope you celebrate, I always celebrate my anniversaries!!! Colon removal and pouch creation and Takedown

James (JamesHunt81), did pouchitis resolve again in the 2nd time as the in 1st? We are awaiting for an update since the original post was Jan.24th 2022 -- It would be really amazing if your method consistently worked!

Karla (KarlaGreece)

UC & 3-stage IPAA 2015/2016, pouchitis on-and-off since 2017 (antibiotics & vsl#3 doctor recommending biologics)

I am glad you've been able to solve your pouchitis without medication. I would just be wary of Dr Mercola's products, he is one of the biggest spreaders of vaccine misinformation on the internet so I wouldn't trust his products either.

https://www.nytimes.com/2021/0...ormation-online.html

I have tried a very similar regime to what you have and had some great success. To me I think one of the keys to keeping away pouchitis is a low to no sugar diet and being careful of carbs as a maintenance issue. I also use wild oregano oil to kill an overgrowth of candida if I think that's an issue.

Unfortunately at the moment I've just had a terrible bout of pouchitis and this is the first time I've turned to Western drugs(flagyl)for 1 week. By the way does this give anyone a very strange taste in their mouth? I will take the absolute minimum amount to get it partially under the control and then go back to my own protocol ASAP. Like you, I dont want to get back on the roundabout of drugs. I definitely do not want this to become of chronic problem.

Thanks for sharing what you take. I will look into those products as I'm in Australia as well. I also take the psyllium but I have found powdered psyllium is better than what you are taking which is a more rough texture. I get the powdered psyllium from Coles the brand is called Wellness Road.

I'm interested in the Glutagenics stuff, but it's like $75/60 servings on Amazon at least.  That ain't cheap! Wonder if L-Glutamine by itself would do the trick?  Maybe some licorice powder?

I'm also interested to hear if the pouchitis was defeated again using this method.

I use Lglutamine and Licorice

Thank you, Felix!  Can you tell me what these things do for you?  Do you use them in combination with anything else?  How often do you take them and when?  I have always heard licorice is good for reducing gas.  I have licorice tea + chamomile in the evening before bed, but it doesn't always keep the gas at bay.  Which L-Glutamine product do you use?  Thanks in advance! 

One more question for Felix: why do you get the deglycyrrhizinated licorice?  Thank you!

I will answer your questions when I get time because they will require a considered answer I'm a little bit busy at the moment. I have done a lot of reading from book by Jini Patel Thompson called "listen to your gut" and these are some of the things she recommends. If you haven't read it, you can get an online and for me it's a bit of a Bible.

Oh that sounds good!  I will order the book and I look forward to your reply!

Jini Says: This licorice is safe to use by both people on steroids (Prednisone) and pregnant women since it has been deglycyrrhizinated - the component that raises blood pressure has been removed. I have used it as both an effective heartburn remedy and to soothe the mucosal lining of the stomach and intestines and help regenerate mucosal tissue.

I have run out of Lglutamine at present in fact you have reminded me to get more. I can't remember the brand I got.

There is just soooooo much info in her books and short videos. I am sure you will find a whole plethora or information that will be helpful.

I ordered both some licorice (the kind you and Jini recommended) and some L-Glutamine from iHerb.  Thank you so much for the information and I'm excited about the new potential bible.  I'll add it to my other bible, "Healing With Whole Foods."  (Not to be confused with the grocery store of the same name-which you probably don't have to worry about in Australia...but they were purchased by Amazon so who knows?  They used to be a tiny natural foods store down the street.)

OH, and it's fennel tea that I have at night that sometimes helps with gas.  Sorry for the misinformation.  It's not licorice.

I hope your pouch is better.  Sorry you had to resort to antibiotics.  I have always wondered if it's pouchitis when I get irritation and inflammation in that area.  How does one know?  Is there a test?  The internet hasn't been very helpful.  I don't think those entries were created by people with pouches.

For me it's pretty obvious when I get pouchitis because I get symptoms that I don't have any other times. I think I've had it three times now since getting my J pouch. The other two times I've managed it myself but this time was really extreme. So for me one of the first symptoms I start getting is chronic headaches and migraines because I am particularly prone to this and when I get any kind of inflammation in my body that's one of the first areas to be affected. Then I start to have absolutely chronic diarrhoea  and a kind of griping sensation in the j pouch. For me the really big and horrible effect is that the diarrhoea becomes so bad I become incontinent overnight. I don't have this problem at any other time. I start to get a bit feverish and exhausted obviously because everything I eat goes straight through me. I really have to be very mindful of hydration.

I have use a lot of the protocols that Jini suggests and have a great success so far. I have a very strong feeling that mine is linked to an Overgrowth of Candida. I have that annoying habit that when I am doing very well I start sneaking into my diet things that I really shouldn't be having like coffee, alcohol and more sweets than I need.

This recent bouts of pouchitis have been a really strong reminder that I need to be vigilant with my diet all of the time if I want to have good health. I can't stand the idea of having chronic pouchitis. Some people are willing to have this and take a preventative drug like flagel but I would rather be off the drugs. That does not sound like a good scenario to me.

This is an exit out of one of her books Corby IBD remission diet. I have used this book and found it incredibly helpful

What Is the IBD Remission Diet? The IBD Remission Diet is a comprehensive healing program that uses an elemental diet for the backbone of the program, but there are also other components included that are absolutely vital for healing the gut and inducing disease remission. These include the elemental diet combined with targeted supplements, homemade broths and natural anti-pathogens: An Elemental Diet – the elemental diet shakes provide the majority of the nutrients and calories. The shakes must be 100% natural and elemental, or semi-elemental in nature. A sufficient number of calories per day must be consumed to address malnutrition, fuel wound healing and promote growth in children. Targeted Supplementation – a number of specifically chosen supplements must be added to the shakes on a daily basis. These supplements help to heal the mucosal lining of the intestine, reduce inflammation, repair tissue damage, support enzyme production and hormonal pathways, facilitate optimal cellular function, and balance the immune system. Homemade Broths – Bone broth (clear soup) made from the skin, bones and white connective tissue of animals, contains a wonderful healing substance called gelatin. French research until the 1950’s shows that gelatin was used in the treatment of diseases such as ulcers, jaundice, diabetes, infection and cancer. Bone broths contain minerals like calcium, phosphorous, sulphur, silicon, magnesium and trace minerals – all in forms the body can instantly absorb and utilize. As the cartilage and tendons are broken down, substances like chondroitin sulphate and glucosamine are also made available to the body in highly absorbable forms. Mushroom broths provide beta-glucans to heal and balance the immune system and vegetable broths provide alkalinity and detox – thus benefiting the liver, adrenals and thyroid. Anti-Pathogen Protocol – a potent, full-spectrum, natural anti-pathogen is used to eliminate any gut infection from yeast, fungus, viruses and pathogenic bacteria. Jini’s Wild Oregano Oil Protocol is combined with high dose probiotics (both orally and rectally) to eliminate infection and establish a healthy bio-terrain in the gut. When you combine all these powerful healing tools together, I believe remission rates to be much higher than the clinical trials utilizing only pharmaceutical elemental shakes, but of course, we have no proof of this. There is no financial reward for testing natural healing protocols. No matter, thousands of readers to date have experienced the following benefits from implementing the IBD Remission Diet: • Provides natural, gradual, gentle detoxification • Resolves malnutrition or delayed growth in children • Reduces inflammation and heals the mucosal lining of the intestine • Establishes a healthy gut flora • Provides bowel rest and heals leaky gut syndrome • Supports enzyme production and hormonal pathways • Balances the immune system • Allows you to take a break from regular meal planning, shopping, cooking, and clean-up!

"The shakes must be 100% natural and elemental, or semi-elemental in nature."  I wonder what this means?  I have found a protein powder that I really like and all the ingredients are pretty elemental. My acupuncturist even approved it and she hates most of those things.  I hate most of them too because they taste gross and don't seem very clean.  My system really senses clean vs. not clean, for example, after I had been using organic psyllium powder, I accidentally bought a bottle, same brand, that wasn't organic. The first time I ingested it, it was significantly different seeming to me, prompting me to look at the label.  It just seemed somehow wrong, like there was something in it that I shouldn't be eating.  Kind of like I was eating a little silica gel combined with psyllium.  Why would organic vs. non organic be that different?  If they weren't, I would have eaten the whole bottle without ever thinking about it.

Now, if I eat a Dorito, I expect that to feel dirty. 

Did you say you take oregano oil when you have an overgrowth of candida?  I think I have always been on the yeasty side.

I also wonder if, when my joints start aching, is that an extension of the pouchitis?  General inflammation?  This is different than fever aches: it's arthritis.  I get it the worst in previously sprained/injured joints and in my elbows, which have a tendency to hyperextend, which causes injury to the joint over time.  And I occasionally get the fevery aches and fatigue and have to rest.  During those times when I'm a bit feverish and fatigued, I get night emissions from my butt that wake me up.  Those are never exactly poop: they're some sort of clear but stinky stuff.  Probably pus or yeast. 

I had watery stools for so long (before starting on the psyllium) that I just thought that was normal for people with pouches.  My spleen thought it was bullshit, and started aching a lot.  Since the psyllium my spleen has been a lot happier.  My anus, too.  It really didn't like all that watery poop.  I rarely have cramps or the gripping sensation you describe.

It sounds like I have had some sort of low level chronic pouchitis most of the time since I have had the pouch.   I'm really excited about reading Jini's book and trying some of those new supplements.  I feel like I have been suffering from malnutrition, even though I ate good food, because everything was rushing through me and scouring out my guts, making them sore and weak and inefficient.  I'm excited because it seems like my guts can be built back up, healed, and then I can be more healthy again and increase the kinds of activities I can do as well as my body's ability to handle stress.  I hope that is the case.

She has a whole lot of different publications but the ones that I have found really useful "listen to your gut"  "Wild oregano oil protocol" and the "IBD remisdion diet"

I think that you will find a huge number of the answers that you are looking for in these booklets. She also has a number of small videos online and free talks that you can download from her website.

I can't speak about exactly what your issues are but I do a lot of experimenting with my own. I do get aches and pains in old injuries and to me this is assign that there is some systemic inflamation going on. When that inflamation is under control those aches and pains go away.

Psyllium is fantastic for firming things up but I think many of us also need to try to heal the intestinal lining so that we can be more healthy and absorb more of the food we are eating. Once you have healed your intestine you may be able to eat foods that previously you couldn't but this takes time and a lot of work.

FYI from the book IBD remisdion diet

L-Glutamine The primary nutrient for cells that line the gastrointestinal tract, L-glutamine is essential for DNA synthesis, cell division and cell growth, which are all necessary for wound healing and tissue repair. It readily crosses the blood-brain barrier, so is also essential for proper brain activity and mental function. L-glutamine helps to maintain the proper pH level in the body (acid/alkaline balance), enhances antioxidant protection and decreases sugar cravings and the desire for alcohol. The main function we're using it for here is to rebuild and repair the mucosal lining of the intestine.

Hi Felix!  Thank you for looking up that information from the book(s) for me!  I will wait and see what "Listen to Your Gut" is like unless you think I should buy the others, too.  I may have to wait since Listen was so expensive.  I will look those up.  It's really nice to hear of someone who is specifically targeting these things. I wonder if this author has suffered from IBD herself?

Just looked up the IBD remission book.  Have you done that program with the shakes and all that? 

Yes I have with great success. Her homemade products are very expensive so I didn't do it that way but she goes through what's in them and how to make them if you want to get all of the ingredients and do it yourself. I'm actually doing it at the moment because of this recent flare up of pouchitis. I really believe that it is going to be the thing that turns the whole situation around again. I'm only on day 2 but already my migraines have reduced.

Look up her website which is called "listen to your gut" and it gives you her whole story which is that she has been a Crohn's sufferer and give you the whole background.

You'll get huge amount of information out of "listen to your gut". Did you buy the online version? This is a bit cheaper and we'll get to you instantly?

I wish I had found her information 15 or 20 years ago because I honestly feel like I could have diverted the course of my disease if I had had this information. Instead I ended up steroid-dependent and had to have my colon removed. Now it's about making sure I have the optimum health that I can post surgery.

I am feeling the same way.  Wish I know a bunch of stuff when I had Ulcerative Colitis.  Doctors didn't seem to know much about the body.  Hope they know more now and are sharing helpful information with people instead of just prescribing pharmaceuticals.  Those should be the last resort.

Sara Marie this is the brand of L Glutamine that I use

Thanks, Anna!  (I happened across another post from you where you identified yourself as Anna.)  I got a small amount of 100% L-Glutamine powder by "Bluebonnet", and if it works I'll seek out a larger amount.  The fermented thing looks cool!  I'm not sure I'll be able to find what you get in the US, but maybe I can find something like it.  Do you love it a lot?

I got the same kind of licorice you use.  These 2 things are supposed to arrive on Wednesday.  I'm excited to see how my system will react to them.  I also ordered some other things to try after looking up the benefits of licorice, based on this study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6065514/

They are "slippery elm" and "triphala".  Have you ever tried those?  I got some wild oregano oil and olive leaf extract, though I don't have a plan for how/when to use them.  I have read on this group that they can be good for treating infection, perhaps? 

These conversations on this J-Pouch group have given me impetus to try to improve my quality of life.  What an exciting experiment! 

Im.in Australia as well, not the US. Most people on this site are american so the products are a little different.

I make a blend up that Jini calls musocal heal and it does have slippery elm.  I'm copy and pasting info on what is in it.

MucosaHeal This is a fantastic product (that I formulated!), which needs to be taken on an empty stomach. As you can see from the description of ingredients below, it is wonderful for healing the gastro-intestinal tract and restoring the mucosal lining. Follow the instructions on the bottle as the dosage varies according to whether you're experiencing active bleeding and inflammation, or not. MucosaHeal contains therapeutic levels of:

Deglycyrrhizinated Licorice – reduces muscle spasms, promotes adrenal gland function, soothes inflammation and fights bacterial, viral and parasitic infection. Increases the number of mucus-secreting cells in the intestine, which improves the quality of the mucosal lining, lengthens intestinal cell life and enhances microcirculation in the gastrointestinal tract.

Slippery Elm – good for diarrhea and ulcers when taken internally. Soothes inflamed mucous membranes of the stomach, intestines and urinary tract. Marshmallow – soothes and heals mucous membranes, skin and other tissues. Aids the body in expelling excess mucus and fluid.

N-Acetyl Glucosamine (NAG) – an amino sugar that forms the basis of complex molecular structures that are key parts of the connective tissue and mucous membranes of the body - tendons, ligaments, cartilage, bone matrix, skin, synovial (joint) fluid, and intestinal lining. To maintain healthy absorption and digestion of food, the body needs a healthy mucosal lining to lubricate and protect the digestive tract. To keep this lining healthy the body uses the natural amino acids and sugars L-glutamine and N-acetyl glucosamine. It is also an immune system modulator with anti-tumor properties.

L-Glutamine – The primary nutrient for cells that line the gastrointestinal tract, L-glutamine is essential for DNA synthesis, cell division and cell growth, which are all necessary for wound healing and tissue repair. It readily crosses the blood-brain barrier so is also essential for proper brain activity and mental function. L-glutamine also helps to maintain the proper pH level in the body (acid/alkaline balance) and enhances antioxidant protection.

Once you get your book listen to your gut, it should have info on  wild oregano oil and olive leaf extract.

Ive never heard of or used triphala.

I hope this all helps you a lot. Many of these things have really helped me but it is always a work in progress.

I'm not sure what you're talking about with the fermented thing?.I find that I have to be careful with fermented products. Too much of them really upsets the balance in my gut. I suspect that if my mucosal lining was healed I would cope with fermented products better.

Thanks for all that information!  When you talk about Mucosalheal, are you saying that you mix all these ingredients together to make something like what Jini sells?  If yes, I'd love to have the more specific instructions, like how strong the ingredients are and proportions of each.

Your L-Glutamine bag says on the top: "100% naturally fermented L-Glutamine"-that's the fermentation I was talking about. 

Yes I do mix them all together to create my own.

I can't find any specific instructions on quantities

So I guess you mostly just experimented with the individual herbs, determined whether they were helpful and how much was right for you, then added them all together in your own special blend?

To be honest I can't really remember Sarah. I suspect each different product has suggestions on daily quantities on the packaging and then I blended them all together and those kinds of quantities