I'd certainly avoid "cleansing" for this purpose. There's no good reason to believe it will help (the prep for a pouchoscopy doesn't), and it will do as much harm to beneficial bacteria as troublesome ones.

How about a carb "holiday" as your cleanse? Since we don't have a colon, there is nothing to actually "cleanse." What you do one day will only last a day or so, so the  idea is to avoid proliferation of the bacteria that stimulate the inflammatory response.

Jan

Thanks for your feedback.  As I'm burning through more and more antibiotics, I need to start looking for other options.  Clearly, the diet is where I need to focus.  It's just really tough for me to give up carbs.  I can give up sweets and sugars, but breads and pastas and rice are huge staples in our family's diet.

Preaching to the choir here! My logical mind tells me that carbs in general are my enemy, and breads/sweets in particular. Between my pouchitis and diabetes, I know this to be true. But, I love them. So rather than swear off completely, I have reduced them, a lot. Shed some pounds in the process and no longer need diabetes meds. But, pouchitis marches on and I still am on rotating antibiotics (along with Canasa, Azulfidine, and Cimzia). Next, I am trying enteric coated peppermint oil to see if it helps with the IBS/SIBO symptoms of excessive gas and cramping. I know the gas is due to bacterial overgrowth, and peppermint oil is supposed to help with that. Peppermint tea was of no use.

Jan

Try IBguard. You can buy it at any pharmacy. It's pepperment that's released in the intestines. I have found it useful at times. It's recommended by GI doctors. My son recently did a GI rotation and came home with some for us to try. 

Personally, I am beginning to feel like the antibiotics they give us are the root to all evil. The 2 times I've had this uncontrolled pouchitis was when I was on long term xifican 

clz81 posted:

Thanks for your feedback.  As I'm burning through more and more antibiotics, I need to start looking for other options.  Clearly, the diet is where I need to focus.  It's just really tough for me to give up carbs.  I can give up sweets and sugars, but breads and pastas and rice are huge staples in our family's diet.

I tried to "fix" pouchitis with diet and got close but never could get off antibiotics. Actually I probably didn't even get that close. I ate as clean as humanly possible, paleo style with mainly veggies and some fish and meats. No bread, pasta, rice, pizza, ice cream, alcohol, chips, bakery items or anything else that is good to eat. Still could not get off antibiotics. Low carb and no sugar definitely makes things better, but it is not an outright "fix", at least not for me.

I am on Entyvio a new bio IV drug that targets only the gut. It seems to be working with little to no side effects. Talk with your doctor. I'm never going on antibiotics again! Or at least I say that now, lol

I got Heather's Peppermint Oil- Enteric Coated on Amazon. It's one third of the cost of IBGuard. It arrived today and I'll let you know in a couple of weeks if it makes a difference.

I was considering Entyvio, but since it targets only the gut, I am afraid it would be useless for my arthritis. But, maybe if my gut was under better control, my arthritis would be too. Something to keep in mind if Cimzia loses its punch.

Jan

Oh another useful tip, VSL at night in a enema form. I don't do it every night but if I feel off that day I will do one and it's been helping too. 

AllyKat, Do you make your own VSL enemas or now they can be bought that way? Thank you.

Peppermint oil rubbed into the souls of your feet (yup, on your naked feet) then put your cotton socks on or you can put gauze over them...it goes right up through your body and even enters your digestive system (??)...you know that it is working when your breath starts to smell minty fresh (and your feet too) (not to mention your output).

You do not always have to swallow things to get them into your body.

Just a thought.

Sharon

Forgot to anwser the cleanse question...

I come from a family where my mom tried any and everything that was the fashion of the week...We did every diet on the planet (healthy or not) and did a lot of fasts.

There was the Maple syrup, lemon juice, cayanne pepper fast...30 days on nothing else then a progressive return to solids starting with chicken breast. Supposedly we reset our digestive clocks, our thyroid systems and got rid of every infection and alergy. Not sure but I do know that we dropped a lot of weight. There was the hot lemon juice cleanse (think draino), the green veggie juice  cleanse (so-so), the strange smelling chinese herb tea cleanse...

We did a week of high colonics + fasting cleanse (called appropriately the double-whamy cleanse...they get you coming and going)

We did them all. None of them cured me, my chronic gastro (probably because it wasn't gastro but IBD)  but it did help with my acne. Made it worse.

Beware of fashion diets and cleanses . They can really hurt us. We can get dehydrated, throw our electrolytes off, get dizzy and for some of us who have already had problems with blockages it can make them worse.

If you ever decide to do it then make sure that you take in enough of everything essential for life, hydration and balance.

I know how frustrated you are but just be careful.

Sharon

Jan Dollar posted:

I got Heather's Peppermint Oil- Enteric Coated on Amazon. It's one third of the cost of IBGuard. It arrived today and I'll let you know in a couple of weeks if it makes a difference.

I was considering Entyvio, but since it targets only the gut, I am afraid it would be useless for my arthritis. But, maybe if my gut was under better control, my arthritis would be too. Something to keep in mind if Cimzia loses its punch.

Jan

Did the peppermint oil help at all Jan?

Sharon, How did the peppermint oil on your feet help you? Did it help with any joint pain? Thanks.

Also my son is taking oil of oregano capsules from Gaia - one in morning and one at night and that has kept him off antibiotics for 8 months now.

I took Peppermint oil for many months. It helped with gas cramps from chronic pouchitis (I suppose it would work the same for IBS). I have not needed it since I started Remicade.

Jan

The peppermint oil makes your output smell minty-sweet...

You can also chew of orange or lemon peel or just add a 1/4tsp of grated rind to your cereal or coffee or yoghurt...

It also helps with gas.

Makes your breath sweet and helps with indigestion.

Sharon

ps...your socks smell like candy-canes too!

I am still on Remicade (over a year now) and Entyvio is next in line if we don't like what we see in the next scope in a few months. CLZ81, like you, I can't get off antibiotics, except in my case it's like 22 years now. While I have proven my original GI's theory about the viability of long term antibiotic use, it doesn't mean I am happy about it.

Take a carb holiday as suggested by Jan. Anything wrong with Quinoa instead of bread? I had scallops tonight with Quinoa and cabbage slaw. I don't eat any breads or pastas. When I do eat carbs and sugars at holiday and family events I pay the price. The only thing you can control is your diet. Really nothing else is within your control in treating this disease. Honestly, I feel 100% better when I eat well, which isn't 100% of the time because I am a foodie, but I know it makes a difference.

I tried quinoa because I was trying to eat healthy never again! It's way to fibrous and made my pouch very unhappy and I stay away from all beans especially lentils 

Over a year on Entyvio and doing great! Hope I get a few years or until something new comes out!

Thanks everyone for the update on what you've been trying!  It's funny that someone just started this tread back up, because today is the day that I'm deciding to truly start some diet changes.  I'm not going cold turkey here, but starting with removal of all sweets and added sugars.  I've done this before, and I did well on it.  Overall, I've reduced breads and crackers...I don't eat them nearly as much as I used to.  I think I will try the peppermint oil too...it can't hurt, right?!

PS...Update on Alinia.  For anyone looking for a "new" antibiotic to use in rotation, after months of using this one on and off, it really works great.  Very similar to Flagyl, but less side effects.  Other than initial nausea with it, it's been great.

Just found this forum after having a J pouch for 24 years!  I suffered with pouchitis for several years and I switched between Cipro and Flagyl, and finally Xifaxin for a few years. A few months ago, I started to get peripheral neuropathy, and my thyroid was getting totally out of whack, so I decided to look into alternative approaches to helping my health and found the Whole 30 program.  There's tons of information if you Google it, but basically, it's a 30 day cleanse/elimination diet that is intended to help folks identify food triggers that cause them to be sick re: inflammation in the body.  You have to take out ALL sugars, dairy, grains, soy, legumes and anything artificial from your diet.  I basically ate only high quality meats, fish, veggies, some fruit, and healthy oils for 30 days.  It was very hard, but totally worth it, as I discovered that after 3 days on my "clean" diet, (and stopping my antibiotics), my pouchitis was gone!  This was nothing short of a miracle for me.  Once I started feeling better, my primary care dr. ordered a blood test for Celiac Disease and low and behold it was positive for the IgA antibodies. I have since finished my Whole30 diet, and am feeling much more confident about how food affects my pouch and, obviously, I do not eat gluten anymore.  I haven't touched an antibiotic in about 7 weeks.  I sometimes wonder if gluten intolerance was at the root cause of my UC 40 years ago.  I know that I'll never know for sure, but it does make me wonder.