Paleo Diet with VSL (3/4 oral; 1/4 through 10ml syringe as an enema. Helping my Pouchitis

I assume she is not a Gastroenterologist?

She is one of the best GI docs in the DC area.  Dr Robynne Chutkin.  Prior to 5 years ago, she was prescribing flagyl/cipro etc.  she cites a book by Martin Blaser ("Missing Microbes") for the theory behind the treatment.  It has helped my asthma and dermitis as well!   No more burning down there.   I cut out all grains, legumes, starches (except sweet potato).  Eat fruit and veg will any protein (except soy).

You are fortunate to find a doctor willing to think outside the box.  

I've thought for quite a while that it's awfully inefficient to introduce beneficial bacteria to the pouch by eating them, since the stomach is such a harsh environment. Probiotics are selected for bugs that tend to survive the stomach, but it's still a difficult journey for them. What do you mix the VSL in?

Yes; this is the first Dr to introduce a totally new approach.  It gives me hope as the cycle of pouchitis and antibiotics is a vicious one and I was losing overall.

I drink 3/4 of a VSL DS...for the other quarter, I mix into liquefied coconut oil (not too hot, about room temperature), roughly 10-15ml of liquid oil does the trick.  Must be mixed well (I use a chopstick).  I have a Teflon 10ml syringe which works good in delivering the VSL right to the source.  I have started seeing the benefits of this (whereby, previously, VSL did nothing for me).  Along with the strict paleo diet, I am starting to feel 'normal' again.  I only posted this to throw it out to the community as  this is the first positive development in quite a long time.  She states that the whole process re-populating the 'correct' bacteria will take 4-5 months.  We'll see.....

Mike-

It could be very helpful to share this with our own GIs. Next time you see her, could you ask her if there's any published literature on the technique (and if you can get the reference)? This would be the most effective way for other doctors to become aware of it. It's possible that she cobbled this together herself, based on a mixture of sources. That's fine, too (especially if it's working!), but harder to share. Thanks, and congratulations on your success!

 

I was delighted to see that Blaser is a real scientist - I'm intrigued and planning to dig deeper. I get impatient with the books written on the basis of "this worked for my daughter, so it will surely work for everyone." Thank you!

I have always wondered at the lack of off the shelf probiotic enemas.

 

Mike, I am interested in our success with the Paleo and VSL.  Are you completely strict on the Paleo and how long before you started to see results using this method, thanks.

Hi.  I started this in the beginning of February.   Yes, I am completely strict on the diet.   I started feeling better after about three weeks.   I did cheat with one beer, once, and paid the price.
I am in the beginning of the second month and it's pretty good (4-5 bm's; while it was 15+ previously).   I hope it really is working (and not just placebo effect?).  I have been through so much for so long, I'll know if this good streak lasts the 5-6 months she said I needed in the initial phase.   Good luck to all.   I will keep updating with any changes.

Hi Mike,

 

this is really fascinating. I am a strong believer of alternative methods to manage my ...itis's (pouchitis/arthritis etc). I have effectively managed pouchitis through stress management, diet and probiotics. My diet is similar to paleo although i don't eat any red meat/fruit or gassy veggies. Another really beneficial supplement that i found is called Curcumin (it's from the tumeric plant) it decreases inflammation i take one capsule of 'Life Extension' Super bio curcumin 400g. It's definitely a bacteria war going on and i think your method is ground breaking.  

 

Information is power

thanks

-d

All,  I started this on Feb.10th.  I started feeling better in about three weeks.

 

I can report that I am feeling better and better.  Still strict paleo; with the vsl as described.

Now it is month two (despite what I wrote in previous, I didn't remember exactly when I saw this Doc.).  I had one setback which I correctly identified as adding a multi-vitamin, fish oil and CoQ1-0 supplements.  I stopped taking the vitamins and now all is back on track.  This proves (somewhat as I am always skeptic) to me that the intake of certain 'foods' are harmful and do cause the Pouch to flare.  I noticed the symptoms (two days in a row) and identified the only new factor (which was me taking the vitamins); I cut out the vitamins and was better the next day.

 

I'll keep you all posted as many have reached out.  I am not a doctor and am only relaying my experience with this new, quite different, treatment.

 

Best to all,

Mike

Mike I have been doing your program for several days and am about 5% better already. I can't find a syringe that is 3 inches long so it will go deep and very narrow like a fleet enema.  Nothing on Amazon. The fleet enema I am using is to big and lets in to much air and a lot is wasted.  Where did you get yours?  Also how long do you keep the mixture in, I put get on my shoulders and keep feet in air to keep it in but I can only do that 5 minutes?  Thanks 

I got my 15ml syringe at the Harris Teeter Pharmacy (they gave me a plastic (or teflon) one.  The rubber ones don't work well for the enemas.   Rubber ones are good for one usage only.

Mike

I stand up (after I feel pretty empty).  The oil stays in pretty naturally.   In and I'm off to work.

I was referring to the plunger in the syringe.  Rubber will cease up after 2 used

Hey Mike, how did in the end your try?

Are you still well? Did you still follow this regime?

Hi All,

Please excuse my lack of updates.

The Paleo diet was a bit too strict for me to follow 100%.   I lost too much weight.  I deviated, slightly upon a trip to Italy.  Though I went back to it strictly, I could NOT maintain a remission of symptoms.  I had such a bad case of Pouchitis for over six weeks (with extremely dreadful anal pain) that I had to resort to Cipro.   The Cipro had me better within twelve hours and fully well within 24 hours after the first dose.   I went back to my surgeon (he performed the Colectomy back in 2005, so not to be confused with the British term for Doctor).   I relayed my treatment with the diet and VSL3 DS both orally and in a homemade enema.   He looked into the literature and says there is NO conclusive evidence that VSL3 administered rectally has any therapeutic effects.   I any event, he recommended low dose Cipro (500mg per day) whenever I am feeling ill.   It seems to be working.   Now, I eat what I please; however, not high quantity.

I've moved to Japan and saw a Japanese GI (who speaks perfect English).  He has prescribed a medicine called 'Irribow'.   As the name implies, it is for irritable bowel.   It is only available here and in some Southeast Asian countries.  I take one 2.5mg tablet twice a day.   It may be helping, but throughout the 30 years I've had bowel trouble, I am, as always, unsure.  I have good days and bad days!
I find if I stay away from larger quantities of food in one go, I feel better.  This is purely mechanical.  Perhaps this is the key to the whole thing.  Even then, I get bad days where I'll take one Cipro for a few days in a row.

Folks, I am cursed with poor bowel function and have pretty much given up on a magic cure!    I take it one day at a time.  Sensible eating, Irribow and Cipro combined help me live a life.   Not perfect; but liveable.

I did find a prescription cream which does help with the burning.  In the US it is know as Anal Fissure Ointment #2 which needs to be compounded.   The Cipro/Flagyl combo also helps the burning! 
It is an enigma, my fellow sufferers!   I haven't got the answers nor the Rosetta Stone as yet!

Peace and good health to all!
Mike

Mike, I'm sorry the novel approach didn't take care of everything. FWIW, I stay on antibiotics all the time and generally don't have any bad GI days. I wasn't willling to keep being sick.

Hey Mike I am more or less in tge same regime... I wouldnt worry fit the cipro.. i believe that a paleo could be good when the pouchbis a bit annoyed by some pathogen while the drug is killing them. i agree with you paleo can lead to a calorie deficiency and believe that one should add fats (buttet and oil) in generous amounts to stay well.

Hey Mike, thanks for the update and thanks for sharing. It's an on-going battle, all we can do is arm ourselves with knowledge and hope that somehow, one day we will understand the enigma of pouchitis and defeat it.

Hi Mike - I am doing the SCD diet which is very similar to the Paleo Diet. I finally got sick of taking Cipro for 20 years & still having chronic pouchitis. Eliminating carbohydrates works, and my pouch is so much better.  Most of the bloating & gas is gone. I am going to try the probiotic enemas again.  I tried them 5 years ago with no luck.

 

When I told my GI that I was doing the diet, she was stunned!  I said why? She said because it is so hard to stick to. She was familiar with it.  After some very pointed & direct questions, she finally fessed up that she has several crohns patients that maintain remission by using the SCD diet.  I will never understand why traditional GI doctors won't discuss diet with their patients.  

 

As someone mentioned in one of the previous comments, I lost weight by not eating carbs.  Weight I could not afford to lose. But, I got so sick of being sick.......and pouch removal will never be an option for me. 

 

Joe

 

Joe,

That is great to hear.   I wish you continued success!

I've often wondered why/how diet isn't mentioned by Docs as well.   My own experience has not been able to prove/disprove any direct links nor patterns as far as diet.   The Paleo approach might have been helping; or, it was the shear lack of quantity which was working for me??
I just have to limit quantity.   That is proven in my own experience.   Fish, also tends to be tolerated well.

Now that I am out here in Japan, I'll see what the 'Eastern' approach is.   They tend to be more holistic in general.   One Doc I've seen put me on a drug called "Irribow".   It works through affecting the serotonin receptors in the gut.  Not sure if it's helping or not.  I do wonder why it is not available, nor exists in any US based literature?   My health insurance starts on Sep. 1.   I will go back and follow-up with this guy.

Thanks, Joe, for your input.   I'll keep you all posted if there are any new developments.

Good health to all!
Mike

There are a number of serotonin 5HT agonists in use in the US. Some are used for IBS and GI motility disorders, by slowing the gut or altering perception of gut pain. Irribow is a little different, but they all affect similar receptors. The main idea is that they treat symptoms (like Imodiun treats diarrhea symptoms), but do not treat inflammation. Symptomatic relief is fine for managing your function, but don't kid yourself into thinking it will cure pouchitis. 

 

Let us know how Irribow works in the long run. If it is considered effective, it may be marketed in the US (after passing FDA protocols).

 

Jan

Thanks for the info.   I was curious and now know there is a derivation of Irribow in the US.

I was told removing my colon was the 'cure'.   Never worked out that way.  Managing symptoms is all I've done most of my life.   I know of no 'cure' for pouchitis; all I can try is to manage the symptoms.  Reversal is a poor option as that ileostomy bag was no bargain and presented its own set of issues!

Cipro and/or Flagyl, in as small doses as possible seems to be my go-to when things get fiery.   The serotonin/IBS meds don't seem to give me noticeable joy.   Immodium/Lomotil make little difference.

Tincture of Opium really slows things down; but, that drug presents its own set of problems.

It's a cat and mouse game.....   My case has always been challenging.   Prednisone, only, worked for the colitis; but it gave me osteoporosis.    Cipro/Flagyl work for Pouchitis.   But it flares up again.  If these stop working, I'm screwed!

Mike

Hi Mike,

Thanks for posting, the info is well worth reading. One question please, when you say "Cipro and/or Flagyl, in as small doses as possible seems to be my go-to when things get fiery. " what small doses have you tried? For me at 1 year post take down & presenting 11 BMs a day with small quantities that are difficult to pass, so therefore maybe stenosis, going for a scope soon, my GI tried 14 days Cipro which had an immediate effect, 4 BMs a day, but it's crept up again so tried Xifaxin with good result but then it crept up again. I don't like the side effects of either & was thinking of experimenting with a 5 day course of Cipro at 500mg. Most people think we should complete the course which I understand but then are we not taking it for a slightly different reason, it's not to treat an infection but to stop a bacterial overgrowth, or are they the same things?

A confused & frustrated Paul

Hi Paul,

Hang in there!   I' can only relay my own experience with UC and Pouchitis.  The surgeon has scoped me and my only issue is chronic pouchitis.    I do not like the side effects of a strict 10 day regimen of 500mg x2 per day.  The pouchitis comes back anyways, and with same frequency/ and x number of days after stopping the antibiotics.

I find that either a regimen of 250mg Cipro twice a day does the trick.  I may stick to this for three days (+|-, depending on the severity or how it's responding). 
If a tough case: I'll take 250mg of Cipro and 250mg of Flagyl together twice a day. 
I rarely take it for more than three-five days in a row.   It has been as effective than ten days at full 500mg twice a day.

I've done it all; listened strictly to the doctors; tinkered, etc.   My surgeon and I team up as he'll be the first to admit that they do NOT have a handle on pouchitis' causes nor an absolute cure.  

Blessed are those who do not get it or even rarely.   I battle everyday (more or less).  I have to always think out of the box!

I've been feeling pretty good for the past two months.   If I get two-three successive bad days, I zap it with the lower dosing I've described.    It has been responding almost immediately.   I've taken myself off the antibiotics in as little as two days!

I am NOT a doctor; so, please take what I say as my own experience only!

I can't wait to hear of artificial bowels ��
That probably wouldn't work perfectly either lol

To good health,
Mike

I've observed that Cipro works just as well for me once daily as it does dividing the dose into two. So instead of 250 mg twice a day I take 500 mg 1 a day. Since it should be taken hours away from any dairy or calcium, I find taking it once a day much more convenient, especially since I mix my VSL into Greek yogurt, and a morning dose of Cipro disrupts my breakfast.

 

FWIW, I've chosen to stay on the antibiotics rather than stopping them so frequently. I guess they work quickly enough that you spend only a little time with symptoms, but I've been glad to have no symptoms. If I had any significant side effects from the antibiotics I might well choose differently! Paul is certainly correct that chronic pouchitis isn't a simple infection that we're trying to eradicate.

Mike,

Thanks for your postings and I've followed this thread with great interest.  For the past 2 years I have eaten a low carb high fat diet to control my Type 1 diabetes.  It has helped with gut and pouch issues too.  Like you I still take Cipro from time to time.  I was so glad to hear you do low dose short courses as I have done the same and it works well. I wondered if anyone else did this.  My routine is to let pouch/cuff issues build until it seems time to break out the Cipro. I usually take it twice a day for a day or two and find it will have a sustaining effect.  I try to minimize antibiotic use as I worry I could become resistant.  I'm also experimenting right now with taking fiber.  Metamucil caused a lot of gas and bloating but Citrucel seems to be helping and with no side effects so far (after one week.)  

A very short course of antibiotic may be much more likely to cause antibiotic resistance than a full course, since it will fail to completely eliminate the "nearly resistant" bugs. OTOH it's also not entirely clear that conventional antibiotic resistance plays much of a role in pouchitis treatment.

Hi All who are following this.   We've moved to Tokyo.   I am having a really tough flareup of Pouchitis.  I went to Sanno Hospital and saw the GI doc I saw back in May.   He originally prescribed 'Irribow', which did not help.   He is now referring me to two of the surgeons who do colo-rectal surgery.   To date, the only thing that helps my Pouchitis is a three to seven day regimen of Cipro and/or Flagyl.  I take about 500-1500 mgs per day (depending on how I'm responding; I gradually taper down).  I do not enjoy the side effects, so I take as little as possible to get me over the hump.   I've been dealing with this for over ten years (40, if I count the entire duration of the colitis).
I will report back on what Japanese surgeons recommend and their theories.
I see them in mid-October.

Mke

By the way:   The GI doc compared taking probiotics to throwing 'salt in the ocean'.   VSL has never, truly, proven itself to me.   I tend to agree with him!

I had a decent run on The Paleo diet; but, it was a function of me starving myself to death as I ate so much less I lost a dangerous amount of weight...

Mike-

Have you tried any other antibiotics (that might have fewer or no side effects for you)?

My surgeon back home, once,  put me on a realy expensive one used for travellers diarreah (I cannot recall the name; but I see it mentioned on these boards).  It didn't work quite as well.   This was a few years back.

Good question as to why it seems that Cipro and Flagyl seem to be the generaly accepted protocol.
Does anyone have good experiences with any others???

The Cipro/Flagyl mess with my general feeling of well being and definately mess with my sleep patterns.   Also, I get a flareup of dermatitis while on them.   Also, if you drink a beer on Flagyl; good luck.  Mixing any alcohol with Flagyl is a real no-no (one of those warnings that I find to be really true!).

Most typical antibiotics give me diarreah (Zithromax, ampicillin, augmentin.  The ones used for respiratory bugs).  I shy away from most other antibiotics unless absolutely necessary.

Good luck.   I was told the J-Pouch surgery was my cure.    Not!   Just different symptoms and different meds ��

Mike

The one you tried was rifaxamin (Xifaxan in the US). It didn't work for me either, but I may try it in combination with another in the future. Flagyl alone never worked for me, but when Cipro stopped working, adding Flagyl made it work perfectly.

 

Are you on the lowest effective dose of meds? I have been able to lower Cipro to 500 mg, Flagyl to 250 mg, both of the *once* daily. Side effects tend to be dose-related. Are you clear on which of the antibiotics cause which side effects, or have you always used them together?

 

Other antibiotics that beople have reported success with include Tindamax, Levaquin, Augmentin, and doxycycline, and a couple of others I've probably posted previously.

 

Good luck!

Yes, Scott, you named the right one.   No joy and it was pricey (even with insurance).

It seems we are in about the same place/dosages with the Cipro/Flagyl.  I only take them (or Cipro on its own; I add flagyl on more stubborn flares) to put down the flares.  I do worry about resistance buildup; however, my surgeon back home says he has patients on daily low doses of Cipro and most do well on it (he's been doing the surgeries since the early 1980s).   I prefer not to take meds everyday, if I can avoid it.

I believe Flagyl has more side effects (ill-feeling in general); however, I worry about the connective tissue warnings with the Cipro.  Even Cipro on its own makes me feel unwell.   It's kind of a cat/mouse game.
I am curious to hear what these Japanese surgeons have to say. 

Be well,
Mike

Xifaxin does not work for me either. Cipro is really the only thing that does although I may try your suggestion Scot of adding Flagyl in addition when needed.  Also, I find Cipro stops working well after a while.  Just like using cortisone cream for butt itch/burn stops after a while too. Interesting to hear that taking VSL is like throwing salt in the ocean.  I've just started making my own saurkraut to use as a food-source probiotic.  I'll report back if it has good results.  It seems to be a constant evolving experiement to figure out things that may help.