Confused about what to do next

I'm sorry. I don't post a lot any more, but have been following the progress of those of you trying the diet thing. I hope you find a solution soon!

i feel for you susan ...i do not know the answer but i do know i ask the same question from time to time especially when it really to me ..on those days i try to get as much sleep as i can..it just helps me cope.. i would probably try antibiotic if it helped in past..if its pouchitis should respond..xifaxin never works for me but i have variety of antibiotics in my medicine cabinet..right now its amoxicillian..

whatever problem i would not stop diet..it may not be the end all but i really think it helps..maybe there would be less good days is my thinking and i know those foods feed bad bacteria how can that be good?
..i had a really out of the blue bad day on tuesday almost believed it was a blockage or obstruction and thursday took an antibiotic which i plan to take a few days and see where i go from there.with diet it appears i do have ups and downs too but it has helped keep me off ongoing antibiotics so i keep thinking thats some improvement but do not understand why it kind of loses it at times myself..so far my go to help is pop an antibiotic,use sitz bath,stick to diet but doubly careful with sugar including now honey and avoid fibrous veggies while i am bad..take a vicodin and my imodium..

with that said hope you get some advise that sets you back on track again..after antibiotic i was much better so figuring its my sibo but who knows.. i would not know without exam if it were pouchitis..but if antibiotic helps thats first thing i try..

if no help with antibiotic i would take c-diff test..do not know much about fecal treatment..is it proven helpful for pouchitis.s.i.b.o. ?

i am going next week to cleveland see shen see what he thinks with my ups and downs..will report any findings..let us know how you are doing..i find when i get it under control again my fighting spirit comes back so keep that in mind..

susan reread your thread..i urging you definitely should try the augmentin.. good antibiotic..i would not have personally gone myself 4 days without it because it just tears us down more..like i said i go for antibiotic as first defense against s.i.b.o and pouchitis..and keep up diet because for me anyway once i have it under control again diet works and i can stop antibiotic..

maybe shen will have some insight on why diet really seems to help but takes a bad turn .. or one has to be so exacting on diet ..i mean really really strict and any digression can set us off or build up the bad bacteria ..like i have been having some treats from digestive wellness that are s.c.d legal has honey in it..getting more convinced that does not work for me and even too much fruit which i may have in one day..i mean maybe that makes the difference so bad bacteria builds up again..we have to really ask ourselves have we digressed at all.. and if so maybe the answer lies there..i definitely can avoid the starches but need to be very diligent if eating out or eating something processed in any way..they very often have starch or sugar..

susan one more thing i have some bouts with c-diff however over years that does not mean do not take antibiotic if it helps now and does not mean you will get c-diff now..i take the antibiotic try to do it as few days as i can for now,take my ssboulardii and hope for the best..

Thank u Rebe,
Very disappointing as the last 3 months I felt great.
Went to GI yesterday! back on xifacan? I do have augmentum in house if this does not work but it has in the past? I should have bitten the buliet sooner. I'm in bad shape

Ps she ran all kinds of blood work and stool tests as well. Please let me know what Shen says about these ups and downs. My GI really does not have an answer but still believes it's bacteria related and feels like you will have to go on and off something to keep it in check. Stupid me waiting so long.
I wish so done would do more research on this. My office is doing FMT study for UC but I'm not eligible because of the pouch. So where do WE stand?

Hi AlleyKat,
I am so sorry that it is back (hopefully only temporarily)...I know how frustrating & painful it is.
I have been doing a bit of research in 'paralelle medicine' and 'homeopathy' to see what I could come up with.
When traditional medicine fails me I turn that way. (my ortho surgeon has me on all sorts of homeopathic granules and drops to help me to heal so why not something for our guts?)
There are a few pharmacutecal labs out there that specialise in this sort of stuff and I found an old favorite (I don't usually name names but...) call Lehning. That is all they make and they have a product (100% natural, made from plants) called Nervopax that works both on the digestive system to relived spasms & cramping and the nervous system to calm the related stress. Not sure if it is readily available where you are but they have a fabulous line of 'natural digestive aids.
I use them with succes to boost my immune system, fight resistant warts and skin tags and heal wounds.
I know that it is grasping at straws here but maybe this straw can help. (bonus: their products are particularly not expensive)
Hope that this is just temporary.
Ps...are you sure that it is pouchitis and not something else? We tend to jump to conclusions pretty quickly considering our past experiences but sometimes a stomach/pouch bug can come from something else.
Sharon

Thanks Sharon, I'll look into this. I'm already under the care of a functional med doctor and take tons of supplements. No, definetly pouchitis cause by a bacteria imbalance. My body is just not responding. Had high hopes for this low carb diet.

The low carb diet can take up to a year. Bacterial imbalances are not corrected right away.

However I am in kind of the same boat as you. The low carb diet has helped but has not completely eliminated pouchitis and I can't stay off antibiotics for longer than 10 days before the same symptoms return, nighttime seepage, urgency, watery BMs. My GI said don't allow slippage to occur- go back on antibiotics as soon as you feel the pouchitis symptoms returning. So I rotate cipro/flagyl, xifaxin, and augmentin, and go off a week and take probiotics, then back on antibiotics.

I would not give up on the low carb diet even though it has not eliminated the pouchitis, because high carbs will only make the bacterial overgrowth situation worse and you will need to take higher dosages of antibiotics.

barister,alleykat i think i totally agree with barrister and stated that to you before the low carb diet is something we should stay on ..you had three good months,barrister is able to get off antibiotic for a bit each time and i too seem to be falling into that mode..good for about two weeks sometimes less...was originally good for about 2 and a half months..then fell into this up and down mode..will let you all know if i get any onsite from shen...oh and yes as soon as you feel things going south sharon pop the antibiotic...or wait no more than a day or so at least thats my attack..if xifaxin works great for you..not for me..we all are in same boat with high hopes for whatever but we are making progress with the knowledge that low carb diet can contribute to our well-being ..i feel pretty confident about that..why it does and does not on continual basis is a mystery still ..

hmmmm... barrister might be right about diet taking time i realize because my son had issues different cause (no colitis and has large intestine)candida caused by imbalance of bacteria..it took two years for him with diet and probiotics to get to point his condition under control on more on going basis..realize his situation different than ours as his intestine needed to heal and he had no operation to create the situation and structurally make it ongoing..but point is well taken that more time is necessary to get it more consistent..

barrister question here..so you have established a routine it seems one week antibiotic and one week off..does that keep things in check .thinking along those lines myself ..in my case so far up until now just popped antibiotic half dosage for a few days and tried again..have been on amoxicillan for about three days this time maybe go another day as this last time was pretty bad attack.. then stop see what happens..have not rotated because only being on antibiotic a few days at a time up till now seemed to work but in the big picture i am only talking sum total of 6 months for this whole diet thing....not really long enough to see what is what..wish i could tale xifaxin but it never worked for me have loads of it in my cabinet..

Yes - one week on antibiotics and one week off, taking probiotics during the off week, keeps things in check. I am also able to take less antibiotics than I used to. My doctor wants me taking xifaxin as much as possible due to it not being systemically absorbed. It works for me, just not as well as the cipro/flagyl combo. When I have some slippage the cipro/flagyl gets me back to the baseline.

I am also maintaining the low carb diet which has helped.

yeh..dr shen would want me on xifaxin too if antibiotic necessary bu if it does not work have to move on..dr. shen and it appears your dr. want to keep our situation in balance with the least risk..makes sense and we should be glad they are first conservative in approach so we try..doesn`t work go on to next one

i like you know at least at this point with diet my need for antibiotic is 1/2 the dosage..looking to see how long i go again without antibiotic..took them three days with this last nasty attack..last time made about two weeks..this time around i am trying to be even more strict by double checking when i am out no sugar or starch in food..eliminate
treats i had with honey(sigh!) they were good..see if that buys me anymore time..my present theory is that the diet knocks out the bad bacteria imbalance thus holding off worst symptoms but slowly infiltrates and sets off the balance of bacteria..however,cannot explain how at first diet for me was really good for three months like alleykat..now falling into different pattern..

but progress was made as you off continual rotting 4 or 5 antibiotics (in my case) and needing less..

alleykat how are you doing today?any improvement?

I think so, no leakage last night so that is a good sign. It was a real bad weekend. It was just literally coming out of me to a point I was severely dehydrated and if I was not so suburn I should have taken myself to the ER. Only here can we talk about such things. Thanks for asking.

For CT
Question? So one week you do let's say the cipro, go off antibiotics the next week and do probiotics, the the next week go on xifacan, then week off, then do augmentum? Do I have your schedule correct?

I was on xifacan for over 2 years at one point. Then my GI took me off cause I developed thrush. Less than 6 months later I flared so bad that no antibiotic worked and they were about to remove my pouch but the remicade worked but I got real sick on it.
So I'm so afraid of this happening again. I had a nice 3 year remission from only 2 doses though.

I'm going to discuss this rotation with my doctor when I see her next month.

I'm deciding if I should temporary go off the diet cause I lost a lot of weight, just until
I put some back on. So confused right now? I'm really at a point that when the antibiotics stops working of throwing in the towel.

quote:

Do I have your schedule correct?

Yes- that is the rotation I do.

Rebe, how r u? I reread your post. What r u eating? Even almond bread is made with honey? I believe u also don't eat dairy? I've been struggling to keep on weight with this diet and can't imagine omitting even more?

Just read your post...sorry you are having issues, any better?