Possible Bacterial Overgrowth - Not Pouchitis

I don't know about an elemental diet for SIBO, but is not a cheap alernative. I was on an elemental diet while awaiting my colectomy (to avoid going on TPN). It cost $450 for one week's worth, and that was 20 years ago! Plus, it was some of the most awful tasting stuff I ever had. I actually looked forward to, and enjoyed, my GoLytely prep after being on the ED for a couple of weeks.

Maybe you are refering to something else than an actual elemental diet, which is a medical food.

Jan

Dr Allison Siebecker in Portland OR does nothing but SIBO cases. I had another phone consultation with her last week. She highly recommends the ED even though is is costly and tastes terrible. It will be next on my list when antibiotics stop working.

@JAN, you got it right. I just like to drink disgusting sludge Joking. It does sound terrible. I'm leery of taking antibiotics but perhaps I shouldn't be. I'm looking at it from an almost faith based perspective of giving my gut as much of a break as I possibly can. I've had the same function (poor) since takedown day 1  and had never considered that perhaps I had a bacterial issue the day I was sent home 12 years ago. Given the lack of cures and data on this stuff a little faith might not be too much of a stretch.

@CLOSEAU. It sounds like Siebecker is recommending it for pouches. Does she believe it is safer in any way/shape/form for maintaining the 'good' bacteria in the pouch and killing the bad? Compare that to a cycle of antibiotics. Or is it all just a crap shoot (no pun LOL! crap shoot...). I sometimes make myself laugh with this j-pouch stuff. Whew...

I know there is a ton of data out there on pouchitis and/or bacterial issues but I haven't had enough time off work to really dig into it. So thank you both for answering and helping me.

Oh, I forgot one item. @both of you. I believe one can create their own ED formula, a non FDA approved version by obtaining the food materials and creating the ED shakes. Jan, I was pricing it out a bit and for a 2k calorie ED daily intake it could cost thousands cash (FDA approved version). A little Google-fu has led me to some sites but as most websites on the internet are now operated by copywriters/marketers I trust nothing without vetting it against the disease community. It's possible I could create my own from scratch for 500 dollars or so. I haven't gotten that far into my investigation.

Dr Siebecker said there was formula you could make yourself and that it would work fine.  It is healthier than antibiotics she said but no guarantee.  Also she wasn't sure how long I would need to take it as I have been a tough case but thought would be a minimum of a month.

CLOUSEAU, did Siebecker give you any internet reference to this recipe?

No, she didn't give me a recipe  as I wasn't ready to take it yet but you may find it on her web site www. siboinfo.com.

Thanks. I may consult a GI first. If I go through it I'll writeup/detail the process for other folks here.

 Look into the low Fodmap diet.  It got my SIBO under control  with it. There is information on this site as well as if you Google it. It also helped, a bit, with my pouchitis    In the end I converted to a K pouch and no longer have the problem. Good luck 

JLH, is there some science behind why the K-pouch would work and you 'not'  have pouchitis vs the J-pouch?

 Actually K pouchers  can also get SIBO  and pouchitis because there is reservoir that allows the bacteria to grow.   If one has an ileostomy then they are free of both.  

Since my surgery for the K  pouch, last November, I have had neither. Either I am very lucky, for which I am greatly appreciative. Or I have not developed either disease  because I extensively irrigate the pouch every time I intubate, almost every time.   Does that answer your question? If not please respond. Janet 

"I've been scoped and am all clear but when I take antibiotics my function significantly improves." @slouchypouch this is exactly my current experience (well, it depends on the antibiotics, but I took Azithromycin recently for a cough and it helped my gut tremendously). What did you end up doing with diet and bacterial overgrowth? I'm considering low FODMAP diet, but would love to know your experience. Hope you are feeling better now that a year has passed....

@JLH Did you try FODMAPs? I see you are also in Boston, did you do it in conjunction with a dietitian/nutritionist? Thank you!

hi – – I was on  the fodmap diet for about a year and it definitely helped. Since the k pouch surgery SIBO  has miraculously disappeared. I  did get on the diet without a dietitian, which was difficult, and then I  had a consult with Kate Scalata, who is outside of Boston. She knows her stuff and has a very helpful website. She's also very expensive and insurance doesn't cover it. As I recall it was $250 an hour!   before you go on the diet I would recommend getting a positive diagnosis of the problem. What boston  hospital system are you in?  

@JLH Thanks, I got the same price quote from Kate Scarlata, and I found a couple of other names that were covered by my insurance too. I go to Beth Israel, but my GI seemed to think the SIBO tests were not worth it because they are difficult to interpret. 

I was thinking of trying the elimination phase on my own and then getting help reintroducing foods... Glad to know it worked for you before you switched to the K pouch. Which test did you use to determine SIBO?

I ended up getting tested and came back negative for SIBO.

 I didn't   have any of the tests because my doctor also said they were hard to interpret. I went on the diet and had good results, so that was the best test.  

googled fodmap  and was pleasantly surprised to see how much helpful information is now available. If you were going to go on the diet yourself I highly recommend getting the app: http://www.monash.edu/industry/success-stories/fodmap. I couldn't have figured out the diet myself without it. If you can figure out the diet  then you can eliminate foods on your own.   The whole process is much easier and more time efficient when working with a dietitian. sometimes it's difficult to find one who is familiar with fodmap, Although perhaps that has changed over the past two years. Linda at Brigham and women's is and I highly recommend her. And of course Kate. 

keep me posted. Hope this works out for you.