Jilly,

In the same boat. What meds are you on? Everytime I go off, pouch acts up...so frustrating to constantly have throbbing anal pain on top of it. Diet makes no difference for me.

Did you read this info, in my opinion there are sound advices there.

The two diets that seem to have the most potential are either 1) very low carbohydrates, or 2) low FODMAP. These seem to have better science behind them than the SCD or paleo diets. I've been putting this off, but if I had to do this I'd start with #1. If that worked well for me after no less than a few weeks I'd start adding back the additional things permitted on a low FODMAP diet.

Please don't tell yourself fibs about carbohydrates, particularly in the beginning. All starches and sugars are carbs, even if they are in fruit or something else that's otherwise wonderful. And very low means *very* low.

Think hard about whether to do this instead of antibiotics vs. along with antibiotics. There are good reasons to try it either way, but they don't give you exactly the same information.

vsl3 helps my husband to ward off pouchitis..

UMass diet is the first evidence based diet for people with IBD..........

http://www.umassmed.edu/news/n...atory-bowel-disease/
http://www.umassmed.edu/Content.aspx?id=148562

I haven't tried it and am not shilling for it. I am doing well with low carb/low sugar modified Paleo diet and taking probiotics with every meal. The diet I am on was coordinated with my doctor, and a registered dietitian.

Seems to me that UMass, SCD, Fodmap, Paleo all have certain shared fundamental principles, the most important one being that carbs and sugars in indiscriminate amounts breed bad bacteria in your intestinal tract and the resulting immune response creates inflammation. Therefore, do not feed the bad bacteria!!!! It is sort of like the "don't feed the bears!"........

I need to be doing this too. But its hard! I love my bread :-) But I do know that the low carb/low sugar diet did wonders for me while I stuck with it. Back on antiobiotics right now so enjoying some sweet things I can't eat when I'm off them. Being bad...

Also, not the way you EVER want to clear up pouchitis, but getting the flu or bowel obstruction is the best way ever ;-) Not eating for days really makes the bacteria unhappy and they disappear. Actually though, I was trying to apply this practically. Maybe some form of managed bowel cleanse can restart everything minus the bacteria. Starving the bacteria seems to work.

scott..a low card diet is not clear enough actually to recommend..its actually no carbs of a certain kind and although scd allows fruit author states may not work for some people and recommends eliminating them and all sugar except honey and again if it does not work eliminate that..

these diets are all guides with room for adding and subtracting really..what ever it takes to starve your systems bacteria overgrowth may not be same for each of us..


i for one know i have yet to test no fruit been clinging to that but very good otherwise as to carbs and sugar ..none..it got me off consistent antibiotics but i find every week or two i have a day or night where i think i am slipping..so i throw in antibiotic maybe just one and appear to be good to go again..but its a mystery when it will happen..last night though oh god things are going south going every hour or so with tinge of discomfort after going..i popped my vicodin and took one 500 mg of amoxicillan..today turned out after bad evening and early morning issues to be very good..

wounding what i need to tweak or maybe figure out if i need an antibiotic every once in a while..yet when i first started diet i was good for over three months..go figure..

only thing i know is diet definitely got me off of daily antibiotics everyday for 7 years..

barrister would you mind being more detailed about what you take probiotic wise with each meal..and i believe you said you go a period of time off antibiotics and then on for period of time..mind elaborating..sharing these details might help others tweak what we are doing r trying...

like i said only thing i know that was clear as a bell was diet helped me off daily antibiotics everyday for 7 years..but i have some bumps that make me often not knowing when i am going to have a rough day/night and what i want is consistency...i have not tried the no fruit card yet although modified that and have not tried the off antibiotic route with injection of one from time to time to keep in balance when or if i deviate somewhat with diet as it appears to be very exacting..so appreciate a recap as to your approach and have you found it keeps you stable over long periods?

i take probiotics but not with each meal ..love to know what and how much you take..

quote:

scott..a low card diet is not clear enough actually to recommend..its actually no carbs of a certain kind

Rebecca, actually a very low carb diet is crystal clear. It's difficult to follow, and it may be more stringent than necessary, but it's not unclear.

I suggest it in the spirit of an elimination diet. There are a number of theories (e.g. low FODMAP or SCD) about specific classes of carbohydrates that are okay or problematic, but it's simply not clear which of those theories might be correct for an individual. The advantage of starting out by eliminating all the carbs for a while is that it doesn't depend on any one of these theories being correct. OTOH choosing one of the theories to guide what carbs to try to add back makes perfect sense.

Did your doctor recommend the occasional single dose of antibiotic that you seem to be using? I've never heard that recommended.

quote:

barrister would you mind being more detailed about what you take probiotic wise with each meal..and i believe you said you go a period of time off antibiotics and then on for period of time..mind elaborating..sharing these details might help others tweak what we are doing r trying...

This is the probiotic I am taking now, with meals twice a day. The product requires refrigeration:

http://www.webvitamins.com/pro..._fnL4CFYFhMgod3A8A9w

I feel it is better than align, culterelle, VSL#3, and Walmart brand. I have better function taking it.

I am on antibiotics one week and then off 2 weeks. I can't get off totally but with low carb diet the functioning is better and the overall amount of antibiotics I have to take is reduced by 75% or more.

Although (knock wood) I have not had to deal with pouchitis, or IBD for quite a while I remember my whacky mom (she was an RN and a naturopath) putting me on the very silly (and probably dangerous)30 day fast. (yes, fast!).
I was allowed a sort of hot natural lemonaide with cayenne pepper in it and maple syrup. Drank about a gallon of it daily for the 30 days and then she let me start eating solides one food at a time.
It took about 2 months to reintroduce most foods...I started with chicken breasts, then other meats, working my way through the protiens and then veggies.
Each new food was 'tested' for about 48hrs then depending on the reaction (hurts, gas, bloating, runs...) I would either leave it in or cut it out.
Most protiens were fine except for eggs in my case, most veggies too...then we moved onto the fruits which were fine.
The last foods to be reintroduced were dairy and starches...potatoes, sweet potatoes and other roots went over well but I never did do very well on white flour (or any flour) or white fats.
The 30 day fast can be knocked down to 24hrs before you start the elimination diet and, the most important thing is...to keep a food diary while doing it.
Write down all food reactions (hives, acne, itchy body parts, sweats, gas, liquid stools, frequency, nervousness...) what time you ate them (morning? Noon? and what you ate it with...some foods are ok on their own or even wonderful mixed with others (lentils with peppers & tomatoes, chicken and salad...) but some mixes just won't work well together for our pouches...
It is a sort of made to measure diet.
You and your body work together to find the right mix.
I still fast 4xs/yr minimum although I must admit that it gets harder over time to stop eating...It sort of resets my clock (but I do drink tons of fluids and keep my electorlytes up while doing it).
Check with your doctor before trying it but it does starve those nasty bacterium....
Sharon

Hi Rebecca,
Just wanted to let you know that I've been on strict SCD for almost 3 years now. I've had great success with controlling pouchitis so far, only having
to do a round of flagyl around twice a year.

There is what's called the 3-month flare, which sounds like what you're experiencing. It happens at 3 months because the weaker bacteria has died off and the more hardy bacteria are making a resurgance. This can happen every 3 months for the first year or so when doing SCD. But - it's a great sign of progress - during this flare, just drop back to your easiest to digest foods until your symptoms get better. You'll continue to make progress the longer you stay on SCD, in my experience.

Nicole

You need to feed the bacteria to help it grow by adding resistant starches. The U Mass diet allows oatmeal probably for that reason.

hi all!

thanks for all the responses. and now, i feel totally overwhelmed with information!!

Seriously, i don't even know where to start. I was thinking about asking my GI doc for a referral to a nutritionist, but I don't know how knowledgeable they are with respect to this stuff.

I know that sugar affects things. But what about the hidden sugar in things? are we supposed to eliminate that too? And then there's the sugar-free stuff. I feel worse having chemicals in me than sugar!

i can easily give up bread. i'll just have bagels and rolls and crackers and cereal and muffins!!

i noticed the 24-hour fast idea and then re-introducing things. Again, i don't even know where to start!

so...Last question (for the moment!):

can you give me one idea of where to start? talk to a nutritionist or dietician? blanketly remove all sweet stuff (what about artificially sweetened things)?

(did you notice the prevailing theme in this post, i.e. how many times can i say that i don't know where to start?!?!? )

If it were me, I would focus less on what is sweet and think more globally, by eliminating carbs as much as you can. In particular: grains, sugars (all kinds, but sucrose and high fructose corn syrup in particular). It is pretty easy to look at ingredient/nutrition labels for total carbohydrate content, and carb ingredients. They really are not hidden.

Obviously, the best choices are fresh, whole foods, not from the packaged food aisles.

If you need to go on a 24 hour fast first to "reset" things, that is OK, as long as you keep up your fluids. Obviously, you will need to avoid fruit juice during the fast, as it is loaded with carbs.

But, that would be a good starting point. Then you can fine tune according to your body's needs.

Jan

wow got lots of good feedback and threads here..where to begin..sorry scott your advice was very sound and clear..as to my trying an antibiotic for a day or so i have not consulted shen but thought it a lot better than being on then constantly for 7 years as i was all the time and try to maintain diet and tweak it..i am sure he would think this an improvement over my last regiment..but i do plan on seeing him in june in cleveland to follow up on my present situation which is far better then it ever was..

barrister thank you for your feedback will look up the website you gave for probiotics ..i gather this was recommended by your dietician..also i think your progress is great..cutting back 75 per cent is wonderful and if probiotics with your program of antibiotics keeps you stable..great..i am trying to find my happy medium too..

someone mentioned on scd 3 years and i might be experiencing what they call bacteria die off ..possibly correct..in that case only problem is the antibiotic works against that..but will consider that theory as igo along

alleykat says add resistant starches again another interesting idea..might consider testing that with oats(love oatmeal..i assume thats what she means?)

jeans reveals a very thorough explanation of elimination diet..thanks jeans i probably will go the other routes first as thats probably the most difficult for me as i just need to keep up my strength and weight(calories) to continue doing the activities i do need and love..but i think the intolerant foods fall into those last few you tried..dairy and carbs..one could test starches one at a time..but i am putting my faith in scd for now..with tweaks

bottom line is i know as we all do everything does not work the same for everyone and all this info we share is better than all the drs in the world..we are definitely on to something as far as what we eat helping or stabilizing pouchitis,sibo,ibd,ips....to what degree and which foods is individual..thank heavens for this site and sharing..

thanks everyone for feedback..where to begin..scott you are correct in your being clear...have not discussed my one shot (1/2 dosage)antibiotic with dr.shen..do not see harm considering i was on antibiotics everyday for 5 years full dosages..but this is or was just figuring it out type exploration..and ironically everything that has been most helpful for me has been picked up on this site!!!i picked up rotating antibiotics from site(got me through for many years) my present diet will be tweaked through things i read on site..

jeans thanks for explanation of elimination diet..i think i can skip through first few eliminations and think the starches are the ones i need to test if i go that route meanwhile i eliminate all as scd suggests...

alleykat might consider resistant starches if oats are one i might consider trying oatmeal which i love if that is one of them???might run that theory past shen see his thoughts on it..

and to nicole thanks about encouragement with scd...and the theory of bad bacteria dying off which is what i think you are talking about after that three month period..forgot about that..scd..would not approve of antibiotic usage as it would be considered step back but as we on this site know those diets are not necessarily specific to pouchitis or sibo ..and everything does not work the same for all of us.. so we try to tweak things to work for us as individuals...

nicole thanks for responding because besides myself you are first person we have heard that over the course of three years has had very good success with scd...perhaps you might want to elaborate on your diet as to anything you found helpful to us or what if anything on diet worked or did not work..do you only eat natural foods ,no processed and so on

i think once again what we are seeing over and over again real help to people with pouchitis,sibo..ips with various versions of low carbs,and tweaking with ideas of resistant starches perhaps and for some less antibiotic usage..big pulses since i had my issues after the operation..

thanks everyone for lots of good feedback..excited to know nicole is feeling successful with controlling her pouchitis with dcd..great..

scott sorry think your explanation was indeed clear..as fa as my taking a low dosage antibiotic occasionally i did not discuss with dr.shen yet because after rotating high dosage antibiotics continually for 5 years this is way ahead of the game..major improvement..

And thanks to YOU, Ms. Rebecca! You moderated the beeGEEbees out of this discussion thread! I love your summations and acknowledgements...THE BESTEST! I sincerely appreciate all of it and your brilliance...

Thank you Thank you Thank you.
and to all who replied, i THANK YOU! I forwarded everything to my doc! wish me luck!

i alleykat might have found my culprit as to my scd ...eliminate iron pills given to me a few months ago for unrelated matter..seems for sure they could cause havoc and possibly the up and down i had over last few months..so far so good but only a few days into it.. resisting resistant starches (haha) until i test this out..

jilly thank you for kind words..

however,rereading your thread about "where to start" again..you got lots of info to process and a lot of it still i think somewhat vague and still not answering your question simply ..so i am thinking you perhaps begin with purchasing the book..breaking the vicious cycle by elaine gottshall..i recommend that because it clearly details what you can and can not eat and why..it also gives you some receipes and sites you can follow up with to obtain products and goods to make it all come together for you..

if followed for about a month you should see some indication if it is helping you by not feeding or starving the bad bacteria ...the book makes it very clear that sugar in processed foods(check labels) and meals eaten out(always ask if they have sugar or starches and flour)it all adds up to feeding the bad bacteria and thus defeating the purpose of diet..she does allow fruit and honey so things can be sweeten in this manner..

do not be discouraged think positive about how you have to eat and if the results are good it will be easier to follow and stick to it..and then there is the discovery of finding yummy substitutes ..we humans are really great in our ability to adapt..if you make it this far than look up site..digestive wellness.com you can order some scd approved goodies and staples like ketchup,cookies,muffins etc..

elaine in book recommends starting with a very limited diet but i think it is possible to just start off eliminating the grains,starches and sugar from diet personally for our purposes..


by using this diet you will have covered the basic premise to most other diets out there and from there you can tweak it after you have this under your belt and experience..

more and more among my doctors (unrelated to my pouch)like my demonologist,intern in talking to them they are getting educated and accepting the theory that certain foods feed bad bacteria and thus may contribute to our gut problems..this is a very big change from when i started my so called adventure with colitis back in 02..