SIBO can take a few months to clear up. I'd recommend discussing with your doctor so it's clear what you'll be doing in 14 days. Xifaxan didn't help me, in spite of its ridiculous price. I'm currently on a three-month course of doxycycline for presumed SIBO.

Thanks Scott,

This is the 1st time I have been diagnosed with this but I had so many problems in the past, who knows if I ever had this before.

Rocket

I hope the treatment works the first time and you are feeling much better soon! Don't you love it when the prescription gets filled before the office gets back to you with the lab results? They usually wait to call until the beginning or the end of the day when they call us all at once...... Take care!

scott and rocket..i had sibo probably from day one of operation!it was first diagnosed as pouchitis and than antibiotic dependent pouchitis then eventually bacteria overgrowth by dr. shen ..treatment by doctors is antibiotics for both....but here is what i found out on my journey..one treatment of antibiotics does not resolve my issues..

some jpouchers like me and most likely you guys (if it does not clear up after the treatment) likely will have this problem continually because when they perform the operation there is a valve between the small intestine and large which prevents bacteria from backing up into small intestine from large intestine..for some reason myself and others with chronic sibo this removal of valve effects me so that it never is gone just keeps coming..why it does not effect all jpouchers because everyone has valve removed i do not know..

thus for 7 years i was on rotating antibiotics keeping the bad bacteria from overtaking the good bacteria..

being on antibiotics leaves you open to c-diff as antibiotics kill good bacteria as well as bad..this prompted me(after third bout of c-diff over that 7 years) to try fighting the bad bacteria by eliminating all foods that feed bad bacteria..sounds way to simple right?

i knew there might be some validity in this because years ago my son developed serious bacteria overgrowth(or candida) from something else..he does not have jpouch.. and through diet ,elimination of foods and various probiotics he is fine today..

well three months i started diet of eliminating all starchy carbs and almost all simple sugars..i stayed on my antibiotics for first two months than last month i stopped all antibiotics and miracle of miracles my most debilitating symptoms of the sibo were gone..i am still going strong and for the first time in 7 years am off all antibiotics..onferred with dr. shen and he too is seeing diet effect his other sibo patients as well..as long as i stay away from any and i mean any starchy carbs and simple sugar i will be ahead of the ongoing bad bacteria issue i have by virtue of the operation..the good bacteria can stay ahead because i am not feeding the bad bacteria..i do suppliment with various probiotic..dr. shen suggested align and i take culturelle and ss boullardii to prevent cdiff..

if short treatment of antibiotics does not work i think you should try this diet..is it difficult to follow ?well that depends on what is more important to yo..for me i stay the course because i see the results..i do not think the probiotics in and of themselves will do it because i was doing that before..it is only the diet that did it...

you can find the best version of diet called scd in book breaking the vicious cycle by elaine gottshill..

now i can actually concentrate on the lesser symptoms or issues i have with my pouch because the biggy seems finally after 7 years to be under control with diet..

Rebe505,
Thank you for all of the good information. I am most interested in the probiotics Dr. Shen suggested. I read a study he conducted, with some others, on the use of VSL#3 probiotics. The result of said study was that it helped prevent pouchitis. It's the only official study I've seen published. As we all know VSL#3 is much more expensive than the probiotics you've mentioned above. It would save us all a lot of money if we could switch to Align &/or Culturelle instead of VSL#3DS. Did Dr. Shen tell you that Align and/or Culturelle is as good to use as VSL#3 or VSL#3DS?

I also take s. boulardii for c.diff prevention as I had that nasty thing off and on for 9 months with my j-pouch. So far the s. boulardii has worked since then helping to keep it away.

Reba505,

Thank you for such great info. I have been on the meds since this past Monday evening and thus far, I feel no different. Very gassy, cramps, and not comfortable.

I hope I feel better soon. The presciption is for 14 days, and take 2 tablets a day.

Rocket

Rebe0505,
Where did you learn about the valve? It would be great to understand the cause and not just the symptoms of SIBO. Though maybe as SIBO seems chronic the cause may not be able to help us treat...Thanks.

Also for my son - rifaximin did not help with SIBO. He also started doxycycline 5 days ago. It has helped him feel better but not made such a huge difference yet with frequency and nighttime activity.
Scott - it is interesting you are on for 3 months. We have not been given a time frame. Previously used cipro and augmmentin and they seemed to lose their efficacy. Glad to have another antibiotic to try.

The doxycycline worked well for a few months and then ran out of steam. I went back to Cipro yesterday and feel better today.

te marie and boys mom in answer to your questions..dr.shen never mentioned vsl #3 when we talked about bacteria overgrowth(since vsl#3 has been suggested for possible PREVENTION of pouchitis not bacteria overgrowth)and truth be told years ago dr. shen told me in his findings with his own patients with pouchitis it was questionable to vsl#3 working at that time..

i only know when we talked about removing starchy carbs(he recommended some starchy carbs) he also suggested i add align...perhaps he felt that particular probiotic (because it is only one type of good bacteria)might be more helpful vs some that have mixture of types of probiotics(vsl#3)

it is important to note to everyone no one yet knows or believes probiotics are the magic bullet to dealing with sibo or for that matter pouchitis.. no body really understands how much is needed or what types and in what combos will work ..its rather complex)i think they feel it could be helpful and would not be harmful period..
as to boys mom question..the idea of the valve theory was suggested to me and my husband by dr. shen a few yers ago but at the time he could not or did not explain why since it is removed for all jpouch surgery it does not effect everyone in a negative way..again it could be very complex as to each individuals system,and sensitivity to bad bacteria for example..

at that time however,he only had suggested antibiotics and since i was someone who found the antibiotics stopped working for me in time ..i was still left rotating antibiotics on a regular basis as one stopped working i switched to another coming back to original one after three months or so...

only more recently did we discuss possibility of change of diet to control the feeding of bad bacteria on ongoing basis since it appears the problem is going to be ongoing..

i want to note i went a step further in eliminating starchy carbs rather than being selective i just eliminated them all(which was more in line with scd diet)and almost all simple sugar..(although scd diet would be extremely exacting about eliminating ever drop except in fruit)but than again scd was not addressing sibo per say but a variety of other diseases.

although adapting the diet i have not rid myself of all the issues i seem to have as i do not always get that perfect b.m elimination one gets with a properly running pouch ,nor am i down to 4 or even 6 eliminations and still do not understand why i sometimes will have a b.m from time to time that feels like acid coming out for example ...i have been able to get off all antibiotics and rid myself of their need anymore for the most devastating,unbearable pain that required them..

this discovery of diet change and getting off all antibiotics after having to rotate 4 or 5 antibiotics for years just to function is the biggest best thing that has happened to me in 7 years..i only can hope it continues..

and although we are all different as to what is going on in each of us (each maybe with different combination of issues for example)i can only hope more of us will bite the bullet and give this rather simple(if not easy at first)solution a try..its really nice to not be anxious about when my antibiotic will stop working,and will i run out of options of antibiotics..

Thank you Rebeca. You are correct. I was talking about a study Dr. Shen et al conducted did testing VSL#3's effectiveness for pouchitis prevention and that is not what everyone is discussing in this thread, dah.

Well, I am on another 2 week supply of XIFIXAN, 550 mg. I told the doctors office that I felt no different then before I started taking this prescription for the prior two weeks.

They wanted to schedule an appointment for me to have an Endoscopic Ultrasound (EUS). Or the medication. I chose the medication first because I first have to find a way and back to the doctor's office. I think I will have this procedure anyway.

I must say, this group of doctors is more thourough then the last doctors I have had. I would rather get to the bottom of this anyway. I am scehduled to see my doctor on Mon, Feb 17 so I will almost be out of my meds by then.

Attached is the link below.

http://www.dhccenter.com/endos...c-ultrasound-eus.php

Rocket

Curious about endoscopic ultrasound - why that test?Thanks.

I like the ultra sound feature of the test. Maybe this type of biopsy goes deeper than a regular flex scope. I'm curious that there might be adhesions or whatever interfering around my j-pouch therefore during a scope using ultra sound would be better than having a CTscan with radiation etc. This has nothing to do with bacteria overgrowth, just saying I can see how this testing could be useful in other areas.

I hope this round of antibiotics works and you are feeling better soon Rocket.

TE Marie,

I hope so too. However, I think I am going to request this test anyway, because I see no difference in the meds. Maybe perhaps I need to improve my diet. Maybe it has to do with the stress I am under at home. In any event, the ultrasound will give me peace of mind, unless the doctor thinks other tests maybe be beneficial if he thinks its something else.

I have an appt next Monday. It will only be the 2nd time I have seen this doctor but am pleased he is being so thourough.

Rocket

I saw my GI yesterday and told him about all this darn gas. I too have to bend way over to get more gas out. He said part of my problem too is that I don't have a Gall Bladder either so that just builds up more problems in my digestive tract.

He believes a lot of my problems are diet related too. So I have to have more chicken, fish, meat, veggies that I can tolerate, and cut down on my carbs too. I have to admit when I do eat that way, I don't have as many problems with diarehha and cramps and so forth.

Its when I cook more like Italian food. I use a lot of garlic, scallions and roasted red peppers, tomatoes and so forth. Being a full blooded Italian, I was raised with this kind of food which I still love. So I have to really discipline myself and this will not be easy.

The doctor has sent me for a blood test which I did yesterday too including C-diff. He prescribed meds that are normally treated for Low Cholesterol and the meds are called "Colestipol Micronized, 1 gram.

PRESCRIBED FOR: Colestipol is used together with dietary modifications for the treatment of high blood cholesterol levels. Other less common uses include treatment of diarrhea due to increased intestinal bile acids after some types of intestinal surgery and treatment of itching associated with partial obstruction to the flow of bile due to liver disease. The itching is believed to be due to the accumulation of bile acids in the body.

Rocket

Sounds like you are getting places Rocket. I've never had a blood test for c.diff! Sounds a lot better than a stool test!

I'm pretty sure you can't detect C. diff with a blood test. He could check for an elevated WBC but that would just indicate any kind of bacterial infection.

Yes, there are blood tests that test for c diff besides PCR assays and antigen detection. More stable than a stool test. Here's a CDC link:

http://www.cdc.gov/hai/organis.../cdiff_faqs_hcp.html

Sorry, should have used the word "besides"

The PCR assay is run on a stool sample to look for C. diff toxin (see http://www.healthcare.uiowa.ed...ndbook/test2740.html for example).

The antigen test is a rapid kit that, again, uses a fecal sample (example http://www.alere.com/us/en/pro...k-chek-complete.html)

Again, I'm happy to be proven wrong, but I don't see anything about a blood test on that CDC link.

TE Marie, Pluot and PoucherINTO

The doctor wants to first try and see if the meds improve my condition. You're correct. He also said I would have to do a stool test if there is no improvement.

I forgot about that when he said a stool test. He does not see anything at all that I might have Chrone's Disease from the tests he has received from my other doctor.

Thank you for the websites.

What are bacteria symotoms?

LilMoe03,

Oh gosh, I think perhaps everyone might not have the same symtomps.

Anyway, constant gas and not fully emptying the pouch. Feeling bloated. The trots, belly pain and so forth. The gas was so horrible that even after using the restroom, I would have to go again, just to pass off steam (gas) and it sounded like a constanct explosion and terrible stench.

I am trying to avoid glueten in my diet when I can. Avoid milk products too.

Rocket

Yeah my son is lactose intolerant so he dont drink regular milk. He is a child so he does cheat at times and wantsbhis little candy,ice cream and cookies :-( some days he just have gas for over 24 hours and he says he feels a relief but no pain at all and he goes a lot to bathroom when he is like that but barely empties out he says he also feels like something out of his body wanna pop out. Discussing this with dr in 2 weeks when he has his appt.

I am a child too (actaully will be 59 this year) as I have a terrible sweet tooth and junk food. The only way for me to stop eating this is not buy it in the first place.

There are alternatives to regualr milk such as Rice Milk, Soy Milk and Almond Milk. They also make ice cream and Cookies from using Rice or Soy Products. Check your grocery store or health food stores.

I have not been tested for lactose intolerant but I am going by my symptoms from my past.

Rocket

i know its not what you want to hear rocket but if it is bacteria overgrowth diet may be way to go..we all just want a pill so much easier i know been there done that but if not successful with your antibiotics no harm in trying the diet..eliminate all starchy carbs and most sugar..can eat fruits..

What are some foods that you eliminated Rebecca that led you to success?

Rebecca,

You are sooooo right. I have reduced some carbs, especially carbs. I used to eat pasta at least twice a week.

Sticking to more fish and meat with cooked veggies and white rice. I know the recipie called for pasta that I made my seafood yesterday, but I needed some starch. It used to be a lot of pasta.

Are pretzals OK to eat? Being without a colon, I crave salt.

Thank you for your e-mail. NO, its not what I want to hear, but your response is for my own good so I thank you.

Rocket.

I'm sure you know the answer to that question! If pasta is out, so are pretzels. Both are wheat. If rice is working for you, think rice cakes for snacks. There are rice crackers too. I like salted nuts for my salt fix. I tolerate nuts just fine.

Jan

Jan,

My diet is getting more limited. When I do eat pretzals, its gluten free so I forgot to mention that from my last post. However, now I have to watch that too because they added Corn Starch and I should stay away from corn.

Aside from Gluten Free Pretzals, I also love Doritos but never buy them for the most part.

And I also crave salt. I wish I could eat peanuts as peanuts are the only nuts I crave. But I can't. I wish I tolerated Nuts like you but I know if I buy them, I would eat 8 0z of that within an 1hr, if that long.

With Rice Cakes there is no protein in them and taste kind of bland to me.

For me, I am trying to find something to eat that is OK while sticking to this new diet. Its hard. On very rare occasions I eat Rice Chocolate Bar which is Gluten and Dairy Free.

Rocket

I have had Type 1 diabetes for 35 years and UC. Since J-pouch surgery 4 years ago I have been on rotation of antibiotics. Whenever I would try to stop the antibiotics, symptoms returned. On Feb. 18th I started a low carb, high fat diet (go to ruled.me) to control my blood sugars. It is the first time ever I have been able to have good, stable BS!!!! AND, and this almost makes me cry because I am so happy, I have been able to stop taking all antibiotics. No more pouchitis!!!! I also take Align and acidopolis. For two weeks I also took Oil of Oregano capsules, a natural herbal antibiotic). This diet takes work and adjustment and you feel sick at first. I don't eat any grains, sugar, or starchy veges. THe only fruit is a few raspberries or strawberries. I am happy making these sacrifices because it is helping my body so much. The keto diet is similar to SCD but SCD doesn't allow dairy and does allow fruit. Keto is the opposite. For diabetics it is also called the Dr. Bernstein diet.

Daffodilly,

Thank you for your post. I once again have Pouchitis and am so sick of these meds that the Flagyl taste is disgusting.

I have cut down on my carbs and I still need work to do on my own personal diet. Your right, it takes a lot of work and for me discipline. I try and stick to fish, chicken and meat with cooked carrots and green beans but still, I need to cut down on my junk food if not eliminate them. I even cut down on my pasts by a lot as compared to what I used to eat which being an Italian, was difficult to do. I don't eat a lot of fruit other than grapes, oranges and watermelon and that is about all my body can handle. I also cannot have any dairy other than eggs, butter and grated cheese so no milk for me. I drink almond milk.

Thanks again.

Rocket