Your diet is IMO unlikely to help much with ongoing pouchitis. Some people *prevent* pouchitis with very low carbohydrate diets, but that's a longer-term process. I suppose a twitchy pouch may be more sensitive to dietary excesses, but 10-14 days of Cipro or Flagyl could have you feeling vastly better by your second or third dose.

You should first be concerned with treating the pouchitis, as ScottF suggested with antibiotics.  Once it is under control, then worry about diet.  The question should not be "what foods work well?" Honey and chocolates may work well but that doesn't mean you should be eating them.  My personal opinion is what my diet is, no processed carbs of any kind, Paleo diet, natural and whole foods, no crap.  I firmly believe, and cannot be convinced otherwise, that inflammatory bowel diseases grew out of the industrial processing of food, a theory buttressed by the dramatically higher incidence of IBD in all the industrialized nations and the lower incidence in the poorer third world countries that eat whole foods, and no junk, because no junk is available to eat.  You are what you eat, and if you eat junk, you will have junk bowels.

Low carb diets are a long term process. You have to appreciate that carbs and sugars are feeding the bacteria that is causing the pouchitis in the first place, but the reduction of those bacterial levels is a process that takes many months for sure and is really a secondary analysis after you solve the immediate problem.

Also, eat fermented foods.  Natural probiotics should be in your diet every day.  You should eat sauerkraut as much as possible.  All other fermented foods, which are naturally fermented, are going to help. 

ctbarrister.  I agree completely. Unfortunately "modern medicine" hasn't really grasped that concept yet. My 19 year old daughter had takedown about 20 months ago. She had what the drs thought was pouchitis in the beginning (no scope) so gave her a round of flagyl. Had to stop because it made her fingers go numb. Since then after researching on this site and some FB groups, I have found loading her up on FLORASTOR probiotics to be very helpful when she gets pouchitis "symptoms" and is back to normal within a day or two. She is also gluten free, still eats sprouted grain bread and a little organic rice at times. She doesn't eat dairy and very little sugar. It's hard but she is pretty good considering she's in college. She's really in to health and fitness so I know she eats pretty clean. Also no processed food, she cooks and I cook and take food to her. Mostly organic foods. ANYWAYS, she has recently been super stressed with her tough schedule and started having urgency, frequency, night time accidents and some blood which is what totally freaked me out!  Her GI prescribed cipro which I'm very concerned about!  He wants her on it for a month which i'm thinking a shorter course? I relize it's going to wipe out all the good bugs and may cause candida.

Any suggestions?  Are you med-free?  I'm really concerned with her being on cipro as I hear there are many bad side effects.  For the last year we have been seeing a naturopath and trying to heal her gut. Now I feel like this antibiotic is gonna undo any good that has been done.

I really believe our diet is a big issue with flare ups.  I have had a take down for 33 years now and have had issues with pouchitis over the last few years.... about 5 times.  I am not tolerating flagyl and cipro well anymore.  My side effects are the same as your daughter... numbness in the toes and fingers.  I have changed my diet with the onset of the beginning stages of another bout of pouchitis... no wheat, sugar or dairy.  I have also been taking Goldenseal and Boswellia.  Goldenseal as an antibiotic and Boswellia for inflammation.  I am also taking probiotics and yogurt everyday.  I'm happy to say my symptoms have gone and I feel I have stayed ahead of the pouchitis.  I'm going to concentrate on keeping good bacteria in and the bad from not entering my mouth...like someone said, the crap we eat is killing us.  

Thank you MARCUS1959, glad to hear your doing better.  Since I posted the above, I decided to get my daughter Cipro. She was on it for about 7 days but shortly after starting it she started having MAJOR anxiety and panic attacks. She has been slightly depressed because her hormones are all out of whack right now, trying to get it taken care of through her integrative med dr.  Anyways, at the time she started cipro it got WAY worse so I googled "can cipro cause anxiety" and I could not believe what I was reading! Many people have this side effect along with many other nasty and serious effects. I also read that if you are "sensitive" to it and if you have reactions they could be permanent. I am so very scared, she is freaking out about exams in college which makes it all worse. She is irrational in her thinking and is even scared to be alone. I got her a script for anti axiety meds but it didn't help that much and didn't help her depression at all. I'm praying her symptoms subside very soon as she stopped the cipro.  Also have an appointment with a psychologist. I so don't want her on antidepressants but she cant cope right now.   So now I also have to worry about pouchitis returning as she cant take either med. I will try the goldenseal and boswellia too!   Why cant you take cipro anymore?

Not enough that she has to deal with the physical aspects of having a jpouch, now she is dealing with mental issues. Sorry for venting, this past summer she was doing really well 1.5 years post takedown now this.

If neither Cipro nor Flagyl work (without unacceptable side effects) then Xifaxan (rifaximin) may be worth a try. It's expensive, and it doesn't work for everyone, but is usually well tolerated. 

Hi Mary Beth... I'm so sorry to hear this about you daughter.  I did not go through colitis then a j pouch until I was in my mid 20's.  I cannot imagine how it must be for a student  or young child.  

Are you getting some good medical advice from her Dr.?  Some of these other meds people have had success with might help.  The one thing she can do is control her diet now and after the pouchitis is gone.  I would eliminate the big culprits completely... grains, sugar and dairy.  

Very sorry... tell her a fellow j poucher understands her pain and is praying for her.

Mark

Thank you Mark! Prayers are really appreciated!  Yes, I think we are on the right track with her integrative/functional med dr. She is getting to the "cause" of her problems which I like. Obviously meds are necessary sometimes but like you, I believe that diet is really key. And apparently her body doesn't like meds anyways. She was doing really well with a paleo style diet while she was going to a personal trainer this summer and at the beginning of college (I had her go because I knew the trainer would tell her she had to eat MORE). Then she admitted to me that she started stressing at college and straying from the diet, eating crap. Then she started having pouch issues.  Now her GI thinks she could have a bit of cuffitis as well because all of her other symptoms went away but she still has some blood so now she's starting some steroid enemas. Which I question because I have heard many here use suppositories? Makes more sense to me since the cuff isn't up that far so why an enema. Anyways hoping it will take care of the blood. I think Lily is really seeing the connection between food, stress and her pouch health. It's tough in college when her roomates have bags of chips and oreos on the counter, plus the stress of hard science classes but she's really strong and will pull through.

Back to her functional med dr. She is concerned Lily may have "cipro toxicity" and recommended glutathione injections to detoxify her body. She came home from college and had one yesterday and one today. By the end of today her anxiety went WAY down and she said she could really tell the difference after the injections. She'll continue getting them once a week for a month or two.

Have you ever heard of Manuka Honey? I have heard from many people on The J-Pouch Group on Facebook that they have good success preventing, even treating pouchitis with it. Sounds counter productive because it's sugar but apparently it doesn't have the bad effects of other sugars and is a strong antibacterial. One lady had chronic pouchitis for years which became antibiotic resistant. Her dr even said she would probably have to go back to a bag. Since using the honey she has been pouchitis free for 2 or 3 years, can't remember. Just another thought for you. Some use it orally, some by enema. Lily has some but I know she doesn't use it consistently. Sometimes I wish she was home so I could monitor her more! I'm going to start her on the goldenseal and boswellia tomorrow when she comes home!  She takes so many supplements she's gonna kill me haha.

The one plus that has come from all of this is that she wants to go into natural medicine which gives me some peace of mind and maybe she'll help others with this horrible disease. It would be nice to see something good come from this. God works in mysterious ways that's for sure but we are so thankful for our faith, it's what gets us through.

Sorry for the long reply haha!  Thanks again, Hope you continue to be pouchitis free!  ��������

Scott, thank you for the info. It is reassuring to know that cipro and flaygl aren't the only options. Really hoping that she can be med free of course but it's good to know. This is all very scary, still learning 2 years later. Thank goodness for these support groups, I have learned more here than from the doctors. Wishing you good heath!

Hi Mary Beth... so glad Lily is having some relief.  It is very hard to stay away from junk food... it really takes discipline but once you get on the right track, I find I don't have those cravings for sweets and chips.  

I have heard of manuka honey.  It was listed on the same website with the Goldenseal and Boswellia as being very beneficial... I plan on getting some tomorrow.  Don't let the sweet content scare you...it's all natural.  When I want to sweeten anything now, like a smoothie or natural peanut butter, I use honey or maple syrup.  Stay away from the processed stuff... I think it's one of the worse thing that promotes bad bacteria in the gut.  With regard to Goldenseal, please read the recommended dosage... you are not suppose to be on it long term... likely one morning and night for 10 days to a week.  The boswellia I think can be used for a couple months but read the label.  

Another thing I am looking  at doing is making my own Coconut Water Kefir.  Check out youtube.  This stuff is suppose to be pleasant to drink and filled the good bacteria... more than you can get in any capsule form or yogurt.  If you read the labels on many yogurts they are sweeten with sugar.

https://www.youtube.com/watch?v=dQCWPEW4GRI

  I have had my pouch for 35 years now and it sometimes is a real thorn in the flesh... especially when pouchitis crops up but you learn to trust God knows and never allows more than we can handle.  What does it say in Romans??  suffering produces  perseverance, perseverance produces character and character produces Hope!  

All the best and I hope if I have misled you in anyway with regards to diet, supplements or anything else, that someone on the forum will correct me.

Mark

Hi there,

I just wanted to say that the Low-FODMAP diet has helped me. There are books about it as well as an app for your phone. Good luck to you!

Jennifer 

Hi JenB... do you have a good website you go to for the low-FODMAP diet and recipes?  I am off gluten, sugar, and very low carbs right now.  This looks interesting to me especially since I read more people using as a preventive measure to gut issues and pouchitis flare ups.  Which App are you using?  I see there are a number of them... some free and some you pay for.

Mark

I'll have to look into Low-FODMAP again. Lily does (mostly) paleo which I know is somewhat different.  

She's still having issues with some blood, mostly on the TP but sometimes mixed in with stool. It's not every time either, not even every day. That's her only symptom.  Any thoughts??  Praying it's nothing too serious. It seems like there are many possibilities.  Her GI gave her hydrocortisone enemas which she hasn't been doing every night. She's back at school so I can't monitor her. She promised she'd start doing them every night until their gone. Hopefully that will help. I made her an appt with Bo Shen for March, I'll be glad to get another opinion from a dr who really knows his stuff.

Hope you all are doing well!  Thanks for all the helpful info and support!

I would continue the cortememas.. they really help with inflammation.  I can only speak from my own experience but they have really helped me.  At her stage I know it's tough as a student but diet is so important and she needs to stay away from any crap.  Gluten for me is a big no no... I think that's a good one to get rid of and maybe all grains/ low carbs if possible... again, that's just me and my experience.  God Bless!

Mark

Hi Mark ,

I read "The Low-FODMAP Diet" An Eating Plan and Cookbook by Penny Doyle. I haven't had much energy to try the recipes, but will try some eventually. The app I use is "The Monash University LOW FODMAP diet" app. I think it cost 7 or 8 dollars, but to me, it was worth it! It has sections: What are FODMAPs?, How do they trigger IBS sympt.?, Carbs.., How do FODMAPs affect us? malabsorption.., Which foods contain FODMAPs?, and MUCH more. It's great because I use the guide where you can look up particular foods and see if it gives you a green light (ok to eat), yellow light (eat sparingly), or red (try to avoid). Don't know if it's the best app, but it meets my needs. 

Thanks!

Thanks Jen... that's actually the first one that came up on the search.  I think I will invest and give it a shot.  Are you on the diet to combat pouch issues or IBD of some kind?

Mark

Hey Mark,

Yes, I started the diet a few months ago due to my first bout with pouchitis. I received a j-pouch 5 years ago due to UC (had for 20 years). It seems to help. 

Jen

Hi Jen, Just reading about the Low FODMAP diet.  Is it more or less restrictive than Paleo?  From the list of "legal" foods you can eat it seems like it might be easier to follow than paleo?  I'm really intrigued and will be reading more!  Have you reintroduced foods yet?  I like that it's not a forever thing and it's mostly to figure out triggers.

Not sure how easy it will be to follow for a 19 year old in college but Lily is pretty good with following the paleo diet so I'm sure she could do it.  Worth a shot, she's only 2 years in with jpouch and has been having issues on and off from the start so we need to figure this out ASAP!!! I am 100% convinced that pouch health has everything to do with diet, just gotta figure out what works best. It's unfortunate that we don't get any guidance from doctors (at least we don't) as far as diet, only medications. Thank God for sites like these!  Anyways, I'm glad you've found this is working for you and thanks for the sharing!

Mark, keep us posted on how it works for you, good luck!  And thanks for the prayers, God bless

Hi Mary Beth,

I'm not sure what Paleo is, so can't compare the two. I haven't officially reintroduced foods yet. Although sometimes I go "off" it on certain meals (just eat what I want for that particular meal- for example: Christmas dinner,etc.- and just know that I might have worse symptoms that day).

In my opinion, you also have to find what works for your daughter, for her individual body. For example, I do not do well with spinach, and sometimes nuts. Although nuts (certain ones) are OK on the diet. I had lost a lot of weight for a while- too much- and was going to see a nutritionist/dietician to help me with reintroducing foods and may still. But have gained back some weight now and am doing better (Thank you God!) so may not do that unless I have to, and just figure it out the best I can.

You're right though. The doctors don't have all the answers. I'm grateful for this site. 

I'm sorry about your daughter. Like Mark said, it must be difficult to handle at such a young age. But there is definitely hope! I will also be praying for her.

Mark, let me know how you like the diet and if it helps. What are you trying it to help with? J-pouch as well? 

Jen 

Yes Jen... J Pouch as well... 33 years and had a good 25 years  good run before my first pouchitis attack.  My GP guessed pouchitis and prescribed cortenema for a week and it was gone like that (I was so problem free up to then, I didn't even know what pouchitis was).  Never came back for another 3 or 4 years and since then has become more chronic.  The cipro/flagyl combo plus the corts worked like a charm the first 2 few attacks then I started to develop numbness and tingling in toes, fingers and shoulders (peripheral neuropathy).  Now I won't go near the stuff.  My present attack is being treated with Rifaximin which I think is working after 3 days and I am starting to feel more normal.  But along with that, I have had a much more strict diet... just eliminating wheat, low carbs, sugar, caffeine, cut way back on dairy (especially soft) and don't touch any processed meat.  I see a nutritionist tomorrow and I will discuss the FODMAP with her.  I suffered from reflux as well for the last 7 or 8 years and was taking a daily med for that.  When I got rid of gluten, it disappeared within a week and I have not touched the med for over 3 months.  So obviously gluten was an irritant to my system and I assume it was not helping my gut.

I'm big on starting my day with a gut healing smoothie.  If you google Dr. Axe gut healing green smoothie, there are a few good recipes.  I couldn't live without my vita mix blender now.   So hopefully between the meds, diet and definitely faith and prayer, we can manage these bumps in the road.

Mark

Mark,

Wow! You've really been through it! I definitely will google that. I have a smoothie in the morning too with a Nutribullet. (Fruit, Almond milk, greek yogurt, VSL, & Entergam) And yes, I stay away from the wheat/gluten too. I think I'm going to try your suggestions about a strict diet: less sugar, & caffeine especially. Although the caffeine keeps me going when I feel so tired from the pouchitis. I'll try though. And I agree, we all WILL get through this! Good luck with the nutritionist tomorrow. Let us know how it goes.

Jen

Mark, It's crazy to me that you've never had problems until now. And why now after all those years are you having trouble? So strange and I'm sure so frustrating for you. I hope you get some relief soon and find something that works for you. I LOVE Dr. Axe, we use some of his supplements and I follow him on FB, Instagram and Pinterest!

Have you tried Manuka Honey yet? Worth a shot.

Jen, thanks for the prayers!  Lily lost a lot of weight she couldn't afford to lose (20 lbs since June) but is also starting to gain again thank God. Smoothies are great because they're more easily absorbed and also pretty easy to add a lot of calories. I add avacado and organic canned coconut milk which is really high calorie.  Plus at college she says she doesn't have time to eat that much. It's hard because she can't just drive through McDonalds or eat a frozen pizza like her friends .

Paleo diet is basically how the caveman ate; meat, veggies, fruit, nuts and seeds. No grains, processed foods, sugar etc.

Have either of you heard about the Specific Carbohydrate Diet?  Designed by a Dr for IBD and IBS but some with Jpouch have found it very helpful too. There are SO many of these diets, it's very overwhelming! 

http://scdlifestyle.com/about-the-scd-diet/

Good luck and prayers for both of you. Thanks for the info and advice.

Mary Beth,

I have not heard of the Specific Carb Diet. Let me know what you find out or if your daughter tries with good results. I know that once with my pouch, I developed gastroenteritis, (I believe it was from food poisoning or a virus) and the hospital dietician gave me info about the Low-FODMAP diet. I didn't start doing it until a year later when I noticed a HUGE difference when I ate at a Vegan/Vegetarian/Gluten free type restaurant in the Dallas area. I told my doc and he said that I mean the Low-Fodmap diet gave me good results and tell the nurse to get me a copy of some info. The info wasn't much. I basicly had to research it myself, but it was enough to get me started. 

Good luck and prayers to you & your daughter!

JenB

From what I've read today about SCD, it's an elimination diet which starves out bad bacteria so that the gut has a chance to heal.

Glad you have good results from LowFODMAP, I'm going to look into that too. Thanks for tha prayers Jen, I hope you have continued good health!

MB

Thank you so much, Mary Beth! And thanks for the info! I'll ask my doc what he thinks and research it. Sounds good!

check out the 'break the vicious cycle diet' also.  it might be similar to the scd--i simply don't recall.  what helped me the most was to never ever consume refined sugar and extreme limit of simple carbs.  any sugar caused bleeding within six hours.  also, for some strange reason shell fish triggered bleeding.

that said, i ended up having the pouch removed, in part, because of pouchitis.  it's nasty.  the constant inflammation also caused chronic anemia.   good luck with the diet--makes a tremendous difference.  janet

I would think I would have taken note of all this valuable input on diets... but it just hit me- I haven't changed my diet like I should!  I have been lucky enough to never suffer from pouchitis since my colectemy in '08. My Kpouch was revised in July '16 and I have suffered from pouchitis ever since. It has been a vicious cycle & I can't get ahead of it for any length of time. Taking Rifaximin, VSL3, iron and I cannot get it under control without going to hospital. Now I think if I eat more pouch friendly foods (I love sugar), it might be another defense to control it. Thanks for all the different diet suggestions. I'm going to find that book Janet. I need all the help I can get. My heart has always ached for those that chronically suffer from pouchitis as it is MEAN. Again, thanks to all for the great diet suggestions. I'm a dum dum & will finally take action.  ��Kara

kara--so sorry to hear the severity of your pouchitis.  a couple of thoughts:

--the 'break/cycle' diet guide is on the web: http://www.breakingtheviciousc....info/legal/listing/

--sugar is in EVERYTHING, especially when you go out to eat and most prepared foods.  i started reading every label and could no longer go to thai restaurants.  i still stay away from sugar as no longer like the taste.  it did change my diet for the better--my weight struggle is many pounds behind.

--from what i know vsl#3 can't stop the pouchitis, but rather keeps it in check once under control.

--how often do you irrigate the pouch?  because i am in constant fear of pouchitis returning i irrigate almost every time evacuation.  when away from home an enema bottle is handy as it collapses, to a certain extent, and holds about 120 ml, which is usually enough to flush out the pouch.  at home flush much more than 120 ml.  the nurses at cc said irrigating would/might help prevent pouchitis and SIBO.

--as for antibiotics, i found augmentin to be helpful--and far less expensive then rifaximin.  when its effectiveness tapered i switched to levequin.  the latter triggered tendentious so be careful with it.  no doubt you want to get off of antibiotics, so that's where diet comes in.  good luck.  it was tough at first, but the reward of no bleeding converted me into a born again , now for the better part of ten years.  janet

Hi Janet, yes, breaking the viscous cycle uses the SCD (specific carbohydrate diet). It was designed by a dr who cured the authors daughter of ulcerative colitis I believe.  Basically it starves out the bad bacteria so that the gut can heal.  I was just reading the list of legal/illegal foods and it really doesn't seem THAT difficult. My daughter does Paleo (for the most part) and SCD actually seems to have a little more variety. I'm gonna have her read the about it.  I read all these books and stories of people curing themselves of UC with these diets and it just kills me that I didn't know sooner, that it was too late for my daughter.  

Question: I thought you said you had your jpouch removed so why would you have irrigate?

Kara, I'm sorry you're having trouble. But there are many ways to maintain a healthy pouch and hopefully you'll find it works for you. Since my daughters takedown in March '15 I have made it my job to help her figure it all out. And I totally agree with Janet, sugar is the DEVIL, that's probably the most important thing you can do, to stay away!  If pouchitis is caused by bad bacteria which causes inflammation and bad bacteria feed on sugar, than it just makes sense that it should be avoided at all costs. Manuka honey is worth a try, many have had great success with it as I mentioned above. Yes, it's sugar but actually works because its a natural antibacterial and it's a prebiotic which is what good bacteria need to populate.  I'm trying to get Lily to make a habit of taking it, adding it to tea with lemon is good but best to take it plain as heat can destroy some of the benefits.  As Marcus stated above, goldenseal and boswellia help with inflammation as does tumeric and Omega3's. I have also read that oil of oregano is another good antibacterial. Lots of things to read up on!

Anyways, although it stinks that you're having issues, don't give up because diet and other natural remedies can really help.  If you can, find a good functional medicine dr or a naturopath.  Food IS medicine! Good luck.

Here's a good article about RAW honey...

http://rejuvenatedforlife.com/...e-to-nectar-of-gods/

Thank you Mary Beth for your support. Janet & I have Kpouches. In a very raw explanation, it requires inserting a tube into to our stoma to empty stool & irrigate to help remove stool. It requires using a syringe to squeeze water through the tube and empty/rinse out our pouch. I also believe the more I 'cleanse' the pouch, the better. My Jpouch failed 5 years ago so I was stuck with a 'bag'. I had more issues, hated the bag & found my last resort to be the Kpouch. I am much happier, but the Kpouch Has its own set of issues. Regardless, all of us pouchers have potential issues. So glad we can share with each to help. You are a great mom to do what you do & all the best progressive health to your daughter. Kara

Thanks Kara. Gotcha, I have read a little about Kpouch. I hope you get some relief soon!

CTBarrister posted:

You should first be concerned with treating the pouchitis, as ScottF suggested with antibiotics.  Once it is under control, then worry about diet.  The question should not be "what foods work well?" Honey and chocolates may work well but that doesn't mean you should be eating them.  My personal opinion is what my diet is, no processed carbs of any kind, Paleo diet, natural and whole foods, no crap.  I firmly believe, and cannot be convinced otherwise, that inflammatory bowel diseases grew out of the industrial processing of food, a theory buttressed by the dramatically higher incidence of IBD in all the industrialized nations and the lower incidence in the poorer third world countries that eat whole foods, and no junk, because no junk is available to eat.  You are what you eat, and if you eat junk, you will have junk bowels.

Low carb diets are a long term process. You have to appreciate that carbs and sugars are feeding the bacteria that is causing the pouchitis in the first place, but the reduction of those bacterial levels is a process that takes many months for sure and is really a secondary analysis after you solve the immediate problem.

Also, eat fermented foods.  Natural probiotics should be in your diet every day.  You should eat sauerkraut as much as possible.  All other fermented foods, which are naturally fermented, are going to help. 

Off, well on Topic. CT, I seen in your Signature, you battled Pouchitis in 1995 but still have the j pouch as of 2015. If I may ask, how long did you have the pouchitis for, and did you have any more reoccurances?