Hi,

I'm a j-poucher from Shanghai. Currently, IBD is dramatically rising in China due to rapidly industrialization. But the rate of J-pouch surgery is very low in China. Lack of related information. So I have to come to here for advice. I was originally diagnosed with UC 2008.  Later became steroid-dependent UC, intoleranted to azathioprine. had 2 step surgeries,  Colon removal and J-pouch creation- July, 2016. Take down-Dec 2016. My first pouchitits flare up was in 1 and half month after take down. And I was hospitalized for ten days then.  IV metronidazole, oral Levaquin and oral mesalazine put me in remission. Afterward I was on and off oral metronidazole and oral mesalazine for more than one year. I could eat whatever I want to have during the time.  3-6BM / 24H And most of the time my stool was firm and semi-firm. I was satisfied with my quality of my life in the time. But since late march this year, the pouchitis comes up again. 7-10BM/24 and stool became liquid or semi-liquid. Solo oral metronidazole does not works on me anymore. tries cipro and Xifaxan But none of them work on me either. Currently, I am put on oral metronidazole oral Levaquin and mesalazine suppository by GI. Seems help. Reduce to 6BM/24H. But my stool is still semi-liquid.  And had pouch-endoscope July 18. GI said the inflammation relieved compare with the scope which I had on May but the infammation and ulcers remains looks like chronic. Should take long time to clean up and cure. GI suggest me to keep on mesalazine and Levaquin. 

Is there any one here take Levaquin for long term?  Do you guys know what serious side effect consequence would be if to do so?  Currently. my sole of the foot feel slightly numbness. I'm not sure if it is coursed by Levaquin. 

Original Post

I’ve been on Cipro (a cousin of Levaquin) for years. Some people do get serious side effects, but I haven’t. It’s important to find the lowest dose that works for you. The numbness is more common with metronidazole than Levaquin - if it gets any worse you need to stop whatever is causing it.

Perhaps psyllium could help thicken up your stool? Good luck!

Hi Scott,

Thanks for advice. I have stopped taking metronidazole to see if the numbness would disappear. Besides, taking Levaquin leads me severe insomnia. I have to reply on hypnotic  from starting Levaquin. And I would see another IBD specialized GI who I trust a lot next Tuesday to check if I could switch to Cipro and Xifaxan or have to stick on Levaquin for long term since my syptom have relieved a lot.  

Btw, have you met any  C.diff or fungus problem when on Cipro. Last month my stool sample lab indicated fungus and high white cell count . The GI said the fungus was caused by the bacteria inbalance within gut which striked by antibiotics and also advised that probiotic could help to clean up fungus. 

Jiajun

Switching from Levaquin to Cipro isn’t likely to help anything, since they are very similar drugs. The numbness may change very, very slowly, even if the metronidazole caused it.

I haven’t had any issues with C. diff or fungus. I do take a very high dose of VSL #3 (4 DS packets per day) - that’s a bacterial probiotic that might help with fungus overgrowth. Unfortunately it’s expensive. The usual probiotic to prevent C. Diff is a yeast formulation (S. boulardi), sold as Florastor, but I haven’t used it much.

I have stopped flagyl and cipro now and am using topical hydrogen peroxide (food grade), very low concentration. 2 teaspoons of 12% h2o2 in quart of distilled water. Leave in pouch for 10 minutes.

jiajun

caused severe tendentious throughout my body.  i was one of the fortunate ones and eventually almost all went away.  if you feel any developing of tightness it might be the cause and check w the doc.  frightening testimonials on line of those who didn't recover.

i now have a k pouch because the pouchitis held the upper hand.  augmentin was very helpful and i think dosage was 625 mg 2xdaily.  not certain.  have you tried it?  keep us posted and hope you get better.  it's a nasty complication. 

Johnnycomelately,

Is the topical hydrogen peroxide administered by enema?

Jiajun,

Cipro and levacquin are indeed antibiotic cousins both in the fluoroquilones family of antibiotics. I was told never rotate from one onto the other. They are too close. Try tinidazole, or augmentin, or xifaxin. I have rotated antibiotics since 1995 for chronic Pouch inflammation. In 2015, I added Remicade which enabled me to decrease antibiotics dosages. If the antibiotics isn’t giving you complete relief, you probably do need to go to a biological drug.

 

Last edited by CTBarrister

yes, please read the article in the link I posted, it is all explained in detail, with pictures.

My computer has been acting strangely of late and the website I posted somehow went to my e-mail account. Please try the website in my last post, it seems to work all right.

Have you read the article on hydrogen peroxide enemas? I have been using it for a week now and have stopped cipro and flagyl. Hope it continues to work as well as it has so far.

Been using the peroxide enemas for over a week now. Everything is working well.   I have modified my technique now and only use one cup of water with one teaspoon of H2O2 (12% Food Grade). I use an enema bag to instill the solution in my K-pouch. I do this last thing at night after emptying the K-pouch. And I leave the enema in the K-pouch overnight. Empty in the morning before going on my daily 25 km bike ride.

Pouch is quiet and pain free all day. I do not have to empty the pouch during the day, so I empty it twice a day, first thing in the morning and last thing before going to bed.

No need for antibiotics. Hope this lasts forever!!!!

Johnwesley40 posted:

Been using the peroxide enemas for over a week now. Everything is working well.   I have modified my technique now and only use one cup of water with one teaspoon of H2O2 (12% Food Grade). I use an enema bag to instill the solution in my K-pouch. I do this last thing at night after emptying the K-pouch. And I leave the enema in the K-pouch overnight. Empty in the morning before going on my daily 25 km bike ride.

Pouch is quiet and pain free all day. I do not have to empty the pouch during the day, so I empty it twice a day, first thing in the morning and last thing before going to bed.

No need for antibiotics. Hope this lasts forever!!!!

Kind of scary considering I see articles about hydrogen peroxide giving people colitis as they attempt to use for constipation, who knows what concentration they used though...  I see this on amazon/walmart looks like it will work 

https://www.amazon.com/gp/prod...ZTWSWYJDCRN&th=1

I guess if this was so simple our GI Drs would be recommending it to us. Any long term studies? Sorry, I used to try everything but learned the hard way. 

I would completely agree with AK and go a step further by saying that unless a medical doctor has recommended the treatment, do not do it. The prior posts on hydrogen peroxide enemas are curiously silent about medical doctor recommendations and also do not mention a litany of reports I found on a 10 second Google search about chemical colitis and other adverse reactions from these enemas. Here is just one:

http://www.patientcareonline.c...rogen-peroxide-enema

I should also caution members that this is the Internet where anyone can say anything. This board has in the past been used aggressively by non medical professionals trying to sell or promote dangerous or unhealthy treatments to the sick and needy. Guide your actions accordingly when you read posts on this board. 

Last edited by CTBarrister

My research also found the same things you read - chemical colitis. One has to use very low concentrations of FOOD GRADE H2O2.

I am informing my gastroenterologist group of doctors on what I am doing, and how well I am doing. These happen to be the same doctors who recommended flagyl and cypro which gave me nerve damage and tendon damage.

I am a retired university professor, and I was the first stomal nurse in my Province trained at Harrisburg Hospital in the USA graduated top of the class.

So you see I have medical training, and have discovered a safe therapy for curing pouchitis without the use of dangerous drugs. I choose to share my discovery on this web site only to help others - including you!

After thinking about your rather nasty and aggressive post about what you think I am doing, I will remove my membership to this group, and continue working on treating my pouch. If the Mayo Clinic is interested, I will share my discovery with them.

Good luck to you.

By by.

My post did not even comment on yours but generally on past posts on this board. There was nothing nasty about it. I stated the facts. There was nothing specific that I said about your post. I just warned board members generally they should take everything they read with a grain of salt and speak to their doctor before experimenting. I find your response to be childish if, as you claim, you really are a medical professional. 

But regarding your post it is a safe therapy for YOU and cipro and flagyl are “dangerous drugs” for YOU. They (cipro and flagyl) are lifesaver drugs for a lot of people on this board.  Unless my doctor recommended hydrogen peroxide enemas and there were clinical studies to back its effectiveness I would not use them. Besides that, cipro and flagyl have been a safe and effective therapy for me for 23 years. And for a number of other people on this board.

Last edited by CTBarrister

I’ve seen people on Facebook forums mention hydrogen peroxide enemas a few times and how it helped them. I would think it’s just like any other treatment. It may work or may not work. As for side effects, who knows. We get side effects from any of our drugs. I would definitely tell your GI if any one of you wants to attempt this. 

 

Johnwesley40 posted:

My research also found the same things you read - chemical colitis. One has to use very low concentrations of FOOD GRADE H2O2.

I am informing my gastroenterologist group of doctors on what I am doing, and how well I am doing. These happen to be the same doctors who recommended flagyl and cypro which gave me nerve damage and tendon damage.

I am a retired university professor, and I was the first stomal nurse in my Province trained at Harrisburg Hospital in the USA graduated top of the class.

So you see I have medical training, and have discovered a safe therapy for curing pouchitis without the use of dangerous drugs. I choose to share my discovery on this web site only to help others - including you!

You didn’t cure pouchitis. You don’t cure pouch inflammation. It is a recurring thing. You found a way to clear the inflammation for now. But as always, at some point it will stop working and the inflammation will build again. Sorry, just really get annoyed when I see the word cured. 

I agree with the posts of Aaron. I remember a thread a few years ago about oregano oil. A poster came on and proudly declared he had discovered the cure for pouchitis and extolled the benefits of oregano oil. Then around 3 months later there was another post that was “oops, I am not cured after all, it stopped working and I am in really bad shape.” Seen a lot of posts like that over the years. Like Aaron said it’s a constant battle and sometimes treatments stop working. I would certainly not dismiss hydrogen peroxide as a possible treatment, but it needs to be discussed with a medical doctor especially in light of other medications and treatments the patient is taking as well as their overall health. 

CTBarrister posted:

I agree with the posts of Aaron. I remember a thread a few years ago about oregano oil. A poster came on and proudly declared he had discovered the cure for pouchitis and extolled the benefits of oregano oil. Then around 3 months later there was another post that was “oops, I am not cured after all, it stopped working and I am in really bad shape.” Seen a lot of posts like that over the years. Like Aaron said it’s a constant battle and sometimes treatments stop working. I would certainly not dismiss hydrogen peroxide as a possible treatment, but it needs to be discussed with a medical doctor especially in light of other medications and treatments the patient is taking as well as their overall health. 

I thought oregano was working too, maybe it sort of was, until I became fatigued and it wouldn't go away.  Also I finally realized the oregano oil was the cause for my concerning chest pains I had developed, which is a listed side effect of oregano, noe they are gone after stopping oregano.  I'm fearful of antibiotics, I think they led to my knee tearing a little while doing squats a couple weeks after taking, but It's not like there are any other alternatives that actually work.  Just have to stay healthy, maintain healthy weight and be mindful of ligament stressing actions...

ASDFQWER,

That's exactly why we should all be careful and not running to experiment with anything that is proclaimed as the soon-to-be-discovered cure of pouchitis.  I have seen a lot of this in the past, not just oregano oil but other substances and herbal remedies being put out as a much better and safer alternative to antibiotics or biologics.  If they were in fact better and safer alternatives, they would have gained traction and you would hear knowledgeable doctors discussing them.  It concerns me a bit because a lot of people coming on this board are not doing well with the Pouch or controlling their inflammation and in their despair, they are somewhat willing to try something "outside the box."  And those people become vulnerable to posts of some new thing that will purportedly eradicate pouchitis.  Oregano oil is just one example of this.  I mentioned it because a lot of people seem to think if it is herbal and natural it can't be bad for you, or if it's "food grade" it's safe to use.  All of these things can be intelligently discussed with medical experts who know your personal medical history and issues. A lot of these things can interact with medicines we are already taking; this is something your doctor will likely know.  I have many times been told to stop taking medications, eating certain foods or to consume a certain diet because of the treatment I am having.

The other thing is people are wanting to find a risk-free treatment alternative and usually there isn't such a thing.  And even these herbal remedies have risks, as previously mentioned.  And often you don't know what they are because they are not commonly intended to be used in the way they are being used here, as a treatment for IBD.

CTBarrister posted:

Johnnycomelately,

Is the topical hydrogen peroxide administered by enema?

Jiajun,

Cipro and levacquin are indeed antibiotic cousins both in the fluoroquilones family of antibiotics. I was told never rotate from one onto the other. They are too close. Try tinidazole, or augmentin, or xifaxin. I have rotated antibiotics since 1995 for chronic Pouch inflammation. In 2015, I added Remicade which enabled me to decrease antibiotics dosages. If the antibiotics isn’t giving you complete relief, you probably do need to go to a biological drug.

 

The GI who I visted last time suggested me to swith to Cipro and xifaxan rotation. And also let me on oral mesalazine as well.  The combination of Xifaxian and oral mesalazine works well on me. My sympton got improved a lot. After 3 weeks on Xifaxian I switched to the combination of Cirpro and oral mesalazine, it still works, but not doing as good as Xifaxian doing. Since metronidazole not working and Levaquin makes me insomnia and depression. I want to know how long will it develops to Xifaxian resistance if all the other antibiotics does not respond to me except Xifaxian.  Due to the pubilc healthcare system in China is totall different from US, our insurance does not cover the expenses for biological agent in China. Very expensive. It cost around 15,000USD per year. Will be a big economic burden for the normal Chinese working class. So the biological agent will not be in my priority consideration except I have to be on it.  Strange that many of you Amercians complaint here that your insurance does not cover Xifaxian and expensive.  Unexpectedly, the pubilc health insurance in Shanghai covers Xifanxian.  It is affordable. 

BTW, thanks to Cleveland clinic's Dr Shen Bo, since he is a Chinese, most of the top surgeries ( mainly based in tier 1 Cities in China) in the fied has closely academic comunication and exchange with him.  The technique level is almost synchronous. 

 

Hi I went to dr bo Shen at the Cleveland clinic he is  a the expert on j pouches he recommended a new drug  like flagel but not side effect I have chronic pouchitis also I am in cipro and flagel he recommends high protein diet no sugar and vsl probiotics maybe u can contact him or go see him 

I loved xifican and took it for 3 years. Then I developed trush and my Dr took me off, I flared up pretty badly. It didn’t work as great again so don’t go off. Again my experience. 

Jiajun,

Dr. Bo Shen is considered one of the best or the best J pouch expert in the USA. My Pouch care was managed for some years by Dr. O (long Greek name which I would misspell), who interned under Dr. Shen at Cleveland Clinic. He actually does preach many of the same things as Dr. Shen, high protein diet, avoidance of sugar/carbs, rotating antibiotics, and it was Dr. O that got me started on biological drugs (I take Remicade which enabled me to wean my antibiotics dosages in half while maintaining status quo).

Regarding Cipro and Flagyl not working as well as Xifaxin, you may need to adjust the dosages. Also I sometimes had a bad rotation through one drug and the next time around it worked well. Don’t give up after one bad rotation. You may need to increase dosages short term and then when you feel better, reduce them. A lot of this is common sense rather than science and you kind of need to adapt to whatever the circumstances are. I do believe diet is important. On the very rare occasions when I consume sugary food I notice a huge difference in the Pouch function. I believe that it was Dr. O that told me feeding sugar to a Pouch is like starting a forest fire. It just starts a feeding frenzy for the bacteria. They tell you as a kid don’t feed the bears, don’t play with matches, etc. and should add to that list don’t put sugar in a J Pouch (or processed carbs).

Good luck Jiajun.

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