quote:

ust wonder about the long term. Anyone out there have any other ideas. First time on the board so thanks in advance

I have taken antibiotics for 18 years (since 1995) to treat chronic pouchitis. There are several basic rules:

1. You need to rotate antibiotics, as the bacteria in your body will build up a resistance to any one drug and it will become ineffective. Also, staying on any one antibiotic may cause or exacerbate side effects. You may have side effects from short term use as well.

2. Levacquin is very close to cipro (like a 1st cousin), so if you rotate 3, 4 or 5 antibiotics, space them apart in your rotation. I rotate cipro/flagyl, xifaxin and augmentin. Xifaxin is in the middle of the rotation and is poorly absorbed/mostly stays in the intestines, and I generally try to stay on it longer than the others on my Doctor's recommendation (usually 2 weeks is the max I take it before rotating, the others I rotate every week).

3. Since taking antibiotics results in the bacteria in your skin being killed, long term antibiotic use makes you prone to yeast infections and warts, because the fungi and viruses in your skin thrive when the microbe population in your skin is altered. It is because of physical space. Bacteria occupies space, and when that space is vacated, Mr. and Mrs. Fungi and Mr. and Mrs. Virus are very happy to move in to occupy the empty space. These issues are treatable as well, but beware of any rash or growths you see breaking on your skin, which is a sign that these infections are setting in.

4. Chronic pouchitis should be scoped and biopsied every year, especially if you ever had a dysplasia diagnosis pre-colectomy.

5. When one antibiotic wears off in effect and you need to rotate, taking Pepto Bismol (which also kills bacteria in the intestines) is helpful. It may thicken and darken your stools. Antibiotics will also thicken your stools.

6. Cutting back on sugar and carbs, if your diet is very heavy on sugar and carbs, will help. Bacteria in the pouch feed on sugar and carbs and by feasting on these items, you feed the bacterial overgrowth situation that is causing or exacerbating the chronic pouchitis. It is like putting gasoline on a fire. You have control over what you eat just like a fireman has the ability to control a small fire.

Good luck. Don't stay on levacquin too long and rotate to something other than cipro to start as levacquin and cipro are in the same family and too closely related. Think of it as antibiotic incest to use one right after the other.

Thanks for the feedback. You made some very interesting points i was not aware of.

I second everything CT said...he about covered it! My rotation for chronic pouchtis has been Cipro, then Pepto Bismol, then Augmentin, and back to Cipro. I usually stay on the Cipro and Augmentin for 2 weeks, and the Pepto Bismol for three weeks. I've actually been doing great on just the PB for weeks now though. I also just started a 7 day methyl prednisolone pack. Works amazing in place of the antibiotics for me. I wouldn't choose to use more than 3-4 times a year though. My doc just wrote me scripts for Xifaxin, Bactrim, and Doxycycline to use whenever I want to try them to see how they work for me. For now, I'm happy heing off of them though! Welcome to the chronic pouchitis team...hope you don't have to be on our team too long :-)

just want to add ..how was your pouchitis diagnosed/ by site or symptoms?if it was just by symptoms you could be someone like myself diagnosed for years with antibiotic pouchitis and only recently told by dr. shen i had bacteria overgrowth not pouchitis..this discovery made because in 4 years of pouch inspection pouch looked great but i had some pouchitis symptoms and responded well to antibiotics..which is treatment for bacteria overgrowth in small intestine as well..

bacteria overgrowth ocurrs in pouch patients because a valve that prevents bacteris to back up is removed during surgery according to dr. shen..the question is why does it not ocurr with everyone?do not know answer to that...dr. shen said he has identified it in about 100 of his 2000 patients..

i use to rotate my antibiotics as described to you in previous threads for years than about 3 months ago switched to amoxicillian as a new drug to rotate..i have been on it for almost three months and have successfully been able to reduce the dosage in half..best i have done in years..i chose to stay on it for as long as i can and than if necessary rotate again..sometimes one antibiotic works indefenitely for some people and at smaller dosages so i would not rule it out..if it loses its resistence so be it..it usually comes back after a time..

i think important thing here is everyone is different and their body will react differently..some people have reactions or bad side effects ,others do not..some people need to rotate others do not,

key point..everything is trial and error!!no hard and fast rules..i have had pouchitis,or antibiotic dependent pouchitis or know bacterial overgroth since day one of surgery!!mind you it is treated the same antibiotics but it may explain why for some cutting out sugar or wheat helps as these create a very good enviornment for bad bacteria to grow..

i have no idea why have been able to cut down the antibiotic usage to half but i do not question when it goes my way..i may even consider trying everyother day..maybe its the type antibiotic or some dietary change or just some change in my bodies sensativity to bacteria after 7 years...

remember trial and error!!

Thank you so much CT for all the key points on taking antibiotics for chronic pouchitis. I did not know any of this and my husband has chronic pouchitis ever since his reversal. we could not understand why the pouchitis kept coming back every other week even while on cipro. your comments about rotating anitbiotics is key i think to my husband getting past this!

quote:

bacteria overgrowth

Same here. I was told pouchiitis by my idiot surgeon's office repeatedly when mys copes were clean. Shen diagnosed me with bacteria overgrowth and then I tested positive for C.diff due to taking all the antibiotics for the mystery pouchitis.

Diet plays a huge roll. Sugar causes most of the issue.

Thanks again for all the good advice. My Pouchitis was diagnosed by symptoms as someone asked. I also have no idea why i have been so successful just taking Levaquin for many years. I use to be on for 10 then off for 7 but now the off days are down to 3 or 4. I like the suggestion of perhaps switching to every other day to see if that would work. I have my yearly visit on monday so will ask about the rotation. As of now i do not seem to have any side effects from the Levaquin. Perhaps i should also occasionally take the VSL#3 as that does put good bacteria into my system. the DR and i tried just taking VSL#3 only with no antibiotics but that did not seem to work. As normal i will schedule my annual scope on this visit. Last year i did have blisters on the pouch so took Canasa for a couple of months. Does Pepto really work withour antibiotics.
PS - also found the comment on Bacterial Overgrowth interesting. Never heard of this but will ask the DR.

I personally would (and do) take a probiotic like vsl#3 while on antibiotics for reasons outlined by CTbarrister (opens up habitat for undesirable critters). To further help prevent unwanted intruders I also take Florastor containing the yeast S. boulardii - which is not effected by antibiotics.

On a side note, I recall reading on this list how a person used a lot of soluble fiber like metamucil to treat their pouchitis. I assume that it provides a means to remove excess bacterial growth. So if your pouchitis is a function of overgrowth, this may be a potential treatment.

May be wrong but thought it was not good to tale VSL#3 at the same time as taking antibiotics - that the VSL#3 may reduce the effect of the antibiotic. From what i remember i had taken VSL#3 during the 3 or 4 days off from antiobiotics

VSL #3 won't interfere with the antibiotics (though the yogurt you might mix it in will interfere with Cipro). Antibiotics do reduce the effectiveness of bacterial probiotics like VSL #3, but that's not a reason to stop taking them.

Hi there, diagnosed with chronic pouchitis about 5 years ago, alternating cipro and augmentin every 3 weeks, still have pouchitis ???? but it helps, tried VSL 3 for about two years made no difference to me, everybody is different, keep trying keep your chin up good luck.Bob

There are other options, beyond antibiotics, to treat chronic pouchitis, although antibiotics is certainly the first line treatment. If that alone doesn't do the trick, A trial of Entocort may help (a steroid) or other drugs used to treat IBD also may help. Totally agree it is trial and error, as we are all different and will respond differently, and probably there are several different things that can cause pouchitis, as well, even if many of the symptoms and treatments overlap.

I am a little confused. Why should you get tested every year if you are you had dysplasia before you colon was removed? I thought having your colon removed took care of any more pre cancer cells. Why does the antibiotics come into play?

Please help me to understand this. I have taken Cipro since my reversal also and I only take one aday and so far it is great. No C-diff. I did start taking Pepto Bismol over a month ago. I was thinking of trying to get off Cipro and just try the Pepto Bismol. What do you all think????

I would love to get off Cipro. It worries me even more being on it forever. And I don't rotate at all.

Having preop dysplasia puts you in a higher risk group for colorectal cancer indefinitely, colon or no colon. You can get dysplasia or cancer in the retained rectal cuff, and even with mucosectomy, stray cells left behind can be a problem. In addition, over time, the mucosal lining of the ileal pouch can change to resemble rectal tissue. So, while you cannot get cancer in the organs that were removed, your basic, underlying disease remains in your genes.

You don't necessarily have to be checked every year, but regular follow up with biopsies are recommended.

If you can replace antibiotics with Pepto Bismol, that would be ideal. And when you say "no C. diff," it actually means, no C. diff yet. It may never happen, but the longer you stay on antibiotics that C. diff is not sensitive to, the risk remains. Cipro is included in that group. Also, remaining on long term antibiotics can cause non pathogenic strains of C. diff to mutate, as the weaker ones are killed off and the stronger, more virulent ones survive. So, even chronic use of Flagyl does not mean you are safe.

Jan

quote:

You can get dysplasia or cancer in the retained rectal cuff,

Bingo. This is where the Cleveland Clinic is seeing cancers develop from what I have been told, and this is why those who had dyplasia pre-colectomy are being told to get scoped every year. Dr. Shen and my GI have been in communication on this issue. We are just through one generation of J Pouches and only now is sufficient data being compiled to establish that the rectal cuff cancer risk warrants annual scoping. I have been told point blank, if you had dyplasia the rectal cuff cancer risk warrants annual scoping. And if you did not have dysplasia that does not mean you are out of the woods on rectal cuff cancer.

As a matter of interest I had my annual scope today and my rectal cuff is not looking so great. I posted the pics in another thread.

I agree. It is too easy to become complacent and not pay attention to the new data when it comes in. Surgeons that tell you that you do not need any sort of surveillance unless you are having problems, just are not keeping up. And certainly if you have a suspicious history. Of course, if you had colectomy for non IBD or non cancer reasons, then that is different. It does not mean you loose sleep at night about it. It is more like having a periodic exam with your primary doctor. It is what you DON'T know that will kill you. The good news is that even though there are more cases showing up, it is still quite rare.

CT, sorry your scope results weren't what you were hoping for, since chronic inflammation makes it more difficult to tell if there is any dysplastic lesions in there. But, you are pretty on top of your check ups, so you should be OK. I wonder if at some point it might be time to treat your chronic pouchitis as if it is Crohn's. It doesn't seem to matter much whether it is or isn't, but maybe a different approach is what is needed. Maybe more time with the Paleo diet will calm things down more?

Jan

quote:

I wonder if at some point it might be time to treat your chronic pouchitis as if it is Crohn's. It doesn't seem to matter much whether it is or isn't, but maybe a different approach is what is needed. Maybe more time with the Paleo diet will calm things down more?

We actually have been treating the chronic pouchitis as if it was Crohn's, although my GI does not really believe that it is. He also did not seem too concerned about the scope today, but wants to see the biopsy results and is reserving judgment. He thinks the nodule in the rectal cuff is a pseudopolyp.

It's only been 6 months on the Paleo Diet and I may need a full year to bring down the SIBO. However, one positive is that there is definitely improvement in the pouch inlet area. He thinks there is overall improvement but it is only really noticeable in the pouch inlet area.

I was referring to all the Crohn's meds you haven't tried yet. But, yeah, once the inflammation is there, it can take a long while to resolve. I keep thinking about how my GI was so impressed at how good my pouch looked after starting biologics. I certainly would never have started them if not for my arthritis. But, that is a leap that many are not interested in doing.

Jan

I have not tried biologics yet, except Imuran to treat my UC back in the early 1990s, which sent my liver chemistries off the charts. But I have used Entocort and Pentasa which are traditional Crohn's treatments. I will discuss biologics with him when my biopsy results are in, but I am not really keen on using biologics, at this point. We have talked about it in the past, but I was hesitant to use them. I have to say though, just about every person in my CCFA support group is taking one biologic or another (most of them are on Remicade or 6MP for UC) and they are reporting good results.

Are you still taking Pentasa? I can definitely understand not wanting to go with the "big guns" before it is necessary, especially if your symptoms are not bothersome. Maybe you could try that worm therapy noted in another thread?

I used to have inflammatory polyps with every scope, but haven't had any for a few years. I still have some minor ulcerations and redness though.

Jan

I am still taking the Pentasa and rotating antibiotics. I am going to talk to my GI about alternative treatments. I will ask him about biologics and worms. One thing I heard at my CCFA support group is that you can't start Remicade and then stop. You have to commit to it. And I don't know if I am ready to get married to Remicade.

This is the 1st inflammatory polyp or pseudopolyp they have seen in a while, and the others were in the pouch. This one is in the rectal cuff. This is a concern especially with my history of dysplasia pre-colectomy.

The continuous treatment thing is only for Remicade, not all biologics. It is to reduce the risk of antibody formation.sinceRemicade is based on mouse protein, it is more likely to induce antibodies. But,you can also opt for Humira or Simponi. Simponi was recently approved for UC, and it is just once a month.

Jan

Jan,

Further to your question, tonight Dr. O called me with the results of my biopsies and we discussed my treatment plan and how to bring down the chronic inflammation and pouchitis I posted pics of in another thread. Here is a summary of what we discussed:

1. Biopsies on the inflammatory polyp in the rectal cuff and elsewhere are negative and just show inflammation.

2. Regarding biologics, he said that he believes that this is "too aggressive" a treatment for what I am manifesting. My inflammation is "acceptable" for what it is now, but if it gets worse we can discuss biologics.

3. He wants me to try lactulose. He wants me to start it on a non-work day, meaning a vacation day Friday or weekend in case I have an averse reaction or diarrhea. If I tolerate it, I am to take it 2 more days with antibiotics, and then continue for another week without antibiotics.

As I have previously mentioned, Dr. O is a disciple of Dr. Bo Shen and studied under him. Lactulose therapy is another Shen-approved form of treatment that is being used for chronic pouchitis, which I have not tried.

He also said that lactulose seems to be working best with patients who have PSC.

Sounds like a plan. I think I remember reading that lactulose treatment is based on the notion that it is a prebiotic. Not sure what the dosing is, but I'm pretty sure it is not what they use for laxative purposes. Regardless, it is such a benign thing, it definitely makes sense to try it.

I used to get inflammatory polyps in my rectal cuff, but haven't had any since starting biologics. Certainly, whatever inflammation I had was not bad enough to start biologics either (I wasn't even on chronic antibiotics). It was just an incidental observation my GI and I had since I have been on them for my arthritis. A happy one at that.

Jan

I have UC and had a complete colectomy with a W pouch in July 2010, then had the reservable done 7 months later. I have had chronic pouchitis since I had the surgery. I am currently on
6MP (started 2 weeks ago)
Ciprofloxacin 750mg twice daily (since getting pouchitis)
I'm on Targin and endone for the pain. I've tried augmentin duo forte 6 months ago but I keep requiring hospital admissions every time I decrease the cipro.
I have spoke to the surgeons and they say my only hope is to remove the pouch and return to having a stoma but Im currently not ready to have it.
I just started the csd diet after seeing a naturopath last week and it seems to be helping ( either that or the 6MP is working).
I live in Australia and we unforuently don't have pepto here....is there something similar to it?
I'm desperate and the pain and rectal bleeding is getting so bad that I'm struggling to work.
I go to the toilet 5 times a day on a good day and anywhere from ^15 on a bad one. I feel nauseated and have severe pain when I eat anything. I've already lost 6 kilos. When I do manage to eat something , half way threw my meal I have to got to the toilet. The pain is worse when opening my bowels and it's always accompanied with retal bleeding.
Is there anything else that I can do or try to help relieve my pain or symptoms?

Maryam

Are you sure that you don't have cuffitis in addition to the pouchitis? That is the rectal cuff, which can have a return of UC for some people. Typically, they treat that with mesalamine or hydrocortisone suppositories. Antibiotics would not help that situation. Also, it is possible that you have Crohn's and that is why the usual pouchitis treatments are not effective. 6MP would be a treatment for Crohn's too.

The severe symptoms you describe sure sound like Crohn's, or maybe even some other upper GI thing, like gallbladder trouble or peptic ulcer. Have these been ruled out?

If you wanted to try Pepto Bismol, it is just a brand name for bismuth subsalicylate. It is a pretty common drug available over the counter in the US.

Jan

Hi Jan, thanks for the reply!!! I don't have crohn's disease or and upper GI issues. I've been tested. I was hospitalized 2 weeks ago cause the pain and other symptoms became unmanageable at home.
I have VERY severe pouchitis and they symptoms and pain is associated with that. I had a flexi sig at hospital when I was last there and they said that the pouchitis is the worst I've ever had and Im in need of a stoma.
I was first diagnosed in 2006 and have never had a period of submission. The biopsies, blood and cultures all show the characteristics of UC.
"It as aggressive as crohn's but more suggestive of UC".
I dont have cuffitis ( not that I know of anyway). Im allergic to flagyl and I had a course of cortisone in hospital and decreased the dose over a week and a half.
I'm just in a rut! I'm desperate for other answers!
Maryam

OK, understood.

So, the thing is, that even if this appears to be UC, you move on to Crohn's type treatment and hope for the best. Otherwise, what is the alternative? Ileostomy. Not the end of the world, but I can understand your desire to avoid.

Jan

Maryam,

It sounds like you should be on biologics. My last 2 GIs both told me that if my chronic pouchitis could not be managed through antibiotics, which it has been for 18 years now, I would need to go to biologics as a "last line of treatment". Remicade was specifically mentioned.

As Jan mentioned Pepto Bismol is just a brand name on a bismuth subsalicylate product. There are a zillion other companies that make it. If you have a Walmart in Australia they have their own house brand bismuth subsalicylate, so does Rite Aid, so does CVS, Walgreens, and on and on and on.....it has to be sold under some name in Australia. It's not like Australia is 200 years behind the rest of civilization. Just ask your local pharmacist for bismuth subsalicylate products. It is usually a pinkish substance sold as regular tablets, a creamy liquid or chewable tablets. I prefer the chewable tablets, although it has a somewhat chalky taste. Pepto Bismol has a preparation that exceeds the others in taste, IMHO.