Has anyone tried alternative therapies for pouchitis

I’ve had my pouch since 2000. Have suffered with pouchitis numerous times over the years. Several years ago my Dr recommend VSL #3.  I’ve found 1 capsule twice a day has made all the difference to me. It is a little expensive but I have not had pouchitis as often as in the past.

Thanks Mrs P. Do you know what is in VSL#3?

I special order from a local Walgreens. I have also ordered from the manufacturer. I hope this helps you 🙂

Ive just looked it up.and its a probiotic. I use Natrens probiotics daily. Thanks for the suggestion

VSL #3, like Visbiome, is a much higher dose probiotic than most. I credit the prescription strength VSL #3 with keeping my pouchitis under control for about a year. I still take it, in a very high dose, even though I now also take antibiotics.

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.

Awsome thanks. I do find the oregano oil and olive leaf extract definately help. Ill try to find those links

Thanks Scott

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.

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. 

Some people do seem to have pouchitis that is related to sugar and other carbs. The usual recommendation is a *very* low carbohydrate diet (almost no starches or sugars of any kind). It didn’t help me, but I sure gave it a try.

Well, I actually feel a bit better today after avoiding all sugar all day long.  The urgency isn't there and the burning is gone too.  Oh how I hate the burning!  I'm still not back to being 100%, but it definitely feels like avoiding sugar and/or carbs might have helped.

I think I had about 8 months of entivo before I had my surgery. Its a monoclonal anitbody, isnt it? If so, it did nothing for me. I believe a small percent of people find no benefit.

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 .

My Budesonide and Cipro RXs are all out now and I was hoping to see some kind of results from the Entyvio infusions, but so far I've seen nothing to indicate it's helping.  It's a strange, nervous feeling being off of antibiotics as I'm not sure how my intestine is going to react going forward. 

I tried probiotics when I was at my worst but they never seemed to do anything. Others have had more luck with them.

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.

I can feel it coming on when I have too many sweets for an extended period.  I use a full #1 capsule of WOO daily, but double or quadruple that if I feel the 'itis' coming on.  This always puts me back right within a couple of days.  A single Mobic seems to help as well.

What is WOO? I cant find anything about it on the internet?

I'd guess it's Wild Oregano Oil.

I am currently taking olive leaf extract (750mg) once a day and doing mesalamine suppositories at night and found it very helpful with subsiding pouchitis symptoms… My body was not able to tolerate any antibiotics so I had to look elsewhere for a solution so far this has worked for me.

The olive leaf oil helps me with poucitis as well.

Ive never heard of Melamine suppositories. Ill have to look them up.

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?

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.

Thanks, Scott.  I will continue taking it.  I have an appt with my doctor on Friday so hopefully he can explain his thinking and expectations.  This is one of the worst (if not THE worst) weeks I've ever had since takedown.  The pain along with the frequency/urgency/bloating/gas/pressure/rawness/burning makes me not want to eat. 

https://www.amazon.com/dp/B01H...62-b57a-3937b847e19c

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.

Thats very intetesting to hear

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.

@Karan If your only problem with the antibiotics is constipation then adding some fiber (e.g. psyllium) taken with meals might solve that.

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.

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

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.