I totally agree with ICROSSCO_1. It is exactly what I ended up doing, taking less meds. Today when the pouch gets crazy, I don't even take the med combo, I take two Aleve, takes away the inflammation and start to feel good again. I have had to take the med combo if I let things go too long without taking anything thinking "it will go away".  I am learning to nip it in the bud, but, again, everyone is different, but definitely worth a try. Note: I do not take a lot of Aleve either. 2 pills one/day. I usually will take it before I go to sleep, takes away pain and I can usually sleep until early morning, feeling better when I get up and thru the day. If intolerant pain comes back, another 2 before bed, but really, one dose usually does it for me. 

Being a 26 year Poucher, believe me, some of the side affects I have had to deal with because of meds is worse than the pouchitis. 

My Story: 19-26 yrs old UC, 1991/26 Colon Removal/J Pouch/Take Down, Pouchitis from Crohns, 2002 fistulas, 2010 lots of fistulas, Could Be Worse cause I've been there - but life is still precious. Go to the mountains and get revived - amazing peace. 

RCROSSCO_1  Interesting. The same seems to be happening for my son. He starts a 30 day antibiotic prescription, feels a bit better after 5 days then gets worse than before he started.  We've tried Cipro, Flagyl and now on Xifaxan. Now going to try Cortifoam.  Not sure what's next, possibly entocort, biologics.  Remicade did not work when he had a colon.

Do you use probiotics?  We've tried all the top brands, but they don't seem to help and may even make things worse too.

Even before he had his colon out, the UC meds (prednisone, remicade) were the same.  He felt better at initially and then got worse.

Yes I tried probiotics, people in the UK are lucky enough to get VSL#3 free of charge, but I found it made me really gassy, bloated, increased frequency so I never touch probiotics at all now. I keep a permanent supply of Cipro and Metro and just drop a few here and there when I feel I need them, and generally its very infrequent.

The whole way the drugs are prescribed is ridiculous. If you immediately stop taking once you hit that plateau of feeling better then the drugs remain effective for the next time, even if its a short time later to begin with. I found once you take them for weeks at a time and they are ineffective and you STILL have bad pouchitis, you are stuck with nowhere to go. I was so fed up that I was ready to have a stoma again, and I was so glad that I found a better way than the blind prescribing of these medications by the professionals. Very interesting your son experiences the same plateau. 

I would never, ever take Cipro and Metro for 30 days, not in a million years. These are serious drugs, with serious long term side effects, especially Metro which can cause permanent nerve damage.

The fact your son feels better after 5 days is great news at least. All I take now is Codiene Phosphate to keep the frequency down, and as detailed above, the odd Cipro as and when required. I think my record was a whole year without needing a single tablet. Pretty big change from the state I was in.

I have also developed a similar method to treat my pouchitis. After 10 years with a pouch and frequent bouts of pouchitis, I will no longer use prolonged Cipro/Metro treatments. When I feel a flare coming, I take a Cipro/Metro combo for a few days, then stagger off over a few days. This has helped me to stay healthy longer, while avoiding the side effects of the antibiotics. My story of coming to this treatment plan has evolved over the years and I find it curious that it lines up so well with this UK chap's findings. Maybe there is hope in this strategy for others.

I truely believe that my long term use of xifacan my favorite drug of all time messed up my pouch to a point I almost lost it 

I’m on Entyvio now and doing good 

I will never take long term antibiotics again 

I'm 18 years with my pouch. Started developing pouchitis 5 years later and it started getting more consistent. I've been on metronidazole, cipro and budesonide for years to control my chronic pouchitis. I started Entyvio over a year ago and have decided to come off them all and stay on Entyvio. I've been off of metronidazole for half a year, budesonide for a month and just going off cipro. I'll have a scoping in 3 months to see how i proceed (my last scoping was the first time in a decade since there was NO inflammation - I just am suspicious that the Entyvio is covering up the side effects but not the underlying pouchitis).

This is great to read in case the pouchitis starts coming back using quick bursts antibiotics might do the trick. My gastro is not optimistic that i can stay off budesonide for life.

Fingers crossed!

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Well... 5 years later nothing has changed. Still in "good" health.

I ended up going 100% pill free for 2 years, no codeine, no nothing, but decided to go back on the codeine as it was more practical to slow things down and prevent any sore skin from increased trips to the toilet. Not that anything was causing any real issue, its just that I don't think a human rear end takes kindly to anything more than about ~2 visits a day.

Hopefully others can get the same benefit and not lose hope.

Certain foods give me rectal inflammation though, never got to the bottom of it, but eating processed junk can trigger cuffitis. Sticking to non-processed food and cooking fresh has stopped it completely.

@rcrossco_1 I’m glad you’re doing well. In case it helps, you might find that a bidet would keep your skin happy without the codeine. My rear end stays happy as long as I don’t have to scrape it with TP.

Well 7 years later….Pouchitis free on Entyvio

Not what I signed up for after getting pouch surgery, but it is what it is and working so I’m thankful.

Thank you so much for providing this advice on using Cipro and Flagyl.  I’ve been getting pouchitis on average once or twice a year since I had the pouch for 18 years now.  Every time I took the one week course of antibiotics the flare ups went away immediately.  However, the last few years I would finish one week of antibiotics, pouchitis would go away then a week later would come back and I would have to take another week of antibiotics.  Since I read your post I tried taking flagyl and Cipro for a day then stop and would only use them as required.  Sometimes I would only take one pill and things would help.  I talked to my colorectal surgeon about this and said absolutely a fantastic idea!!  I wouldn’t even discuss this idea with my family GP as his answer would be that I have to finish the whole course.  At the end of the day I think it’s worth trying if you are someone that gets occasional pouchitis.  I find that taking flagyl and Cipro for a week straight is hard on the body as opposed to a few here and there. That’s my opinion.

Thank you for posting this information rcrossco_1.  I've been on daily antibiotics for years, afraid to stop because of that terrible sickness that you described, "feeling of being poisoned", etc.  Gives me something to think about trying...Everyone seems so unique with "pouchitis", we have to just experiment to see what works.   

Have read through this thread several times, having been riding the antibiotics merry-go-round for most of the past few years since take-down. After treating with a few rounds of Cipro and Flagyl, I had been doing fine on Rifaximin until insurance coverage hard stop.  Resuming it from Canadian pharmacy after a break never got me back to where I left off, so went back to Cipro and Flagyl and then replaced Flagyl with  Tinidazole, but could not completely stop Cipro. So stayed on both at low doses  for some months and was GREAT.  When I tried  to cut back on Cipro I got worse. Went to full doses of Cipro and flagyl for several weeks, but having returned to the original Cipro/Tinidazole my symptoms also returned. So burning, frequency, leaking and episodes of bleeding. Not sure what to do next.  Cold Turkey with the Cipro and a full dose of Flagyl for a few days to see where it gets me?  

I've got a call in to chat with Dr  Shen who will again tell me to stop the Cipro, advice I want to take but need to function so keep returning to it. These are indeed the days when I think about just admitting this may not be all it's cracked up to be and the ostomy would have been much easier to deal with.  Or considering whether I have enough motivation left to deal with a k-pouch conversion.  

I have no cuff, just a very angry anal transition zone. Does local cortisone - foam or otherwise - work for this I wonder?  The rest of my pouch is lovely. It always seems that the antibiotics are like killing a flea with a sledgehammer.

Thanks to all who weighed in about there experienced and for anyone who takes the time to read mine.  

@rcrossco_1 posted:

Well... 5 years later nothing has changed. Still in "good" health.

I ended up going 100% pill free for 2 years, no codeine, no nothing, but decided to go back on the codeine as it was more practical to slow things down and prevent any sore skin from increased trips to the toilet. Not that anything was causing any real issue, its just that I don't think a human rear end takes kindly to anything more than about ~2 visits a day.

Hopefully others can get the same benefit and not lose hope.

Certain foods give me rectal inflammation though, never got to the bottom of it, but eating processed junk can trigger cuffitis. Sticking to non-processed food and cooking fresh has stopped it completely.

Such an interesting thread! I am going to take this into consideration as I am also the type of patient that responds to cipro/metro within 24-48 hours. I've been trying a very long and extended weaning but I wonder if going off until I feel I need them is maybe another approach. What dosage do you use now when you feel like you need to use it for a couple of days?

Always the same standard. 3x400mg Metronidazole, 2x500mg Cipro daily.

Normally any looseness/pouchitis gets better in almost hours, certainly within 1-3 days.

Lately I really cut down my intake.  I had a flare up starting and I took one Cipro 500mg in the morning and 1 metro 250mg at lunch. Did it for 5 days.  Total of 10 pills. One week after stopping I had a flare up starting again.  So I did the same dose again but only for 3 days. Surprisingly it worked for me.  I used to take 5 pills a day for 7 days, total of 35 pills, as prescribed by doctor.  It worked great, but then a flare up would always follow a week later.  Ever since I read this thread I tried taking low doses and it works just the same for me.  I think the key is to catch a flare up early.  If you wait too long then it’s harder to deal with.  Everyone’s case is different.  Hopefully this helps someone who is willing to try lower doses.  I would also like to mention that I get pouchitis on average twice a year.  

Yes this all sounds very much like how I respond to both. Right now I am taking 500mg metro and 250 mg cipro 2x a week (so skipping around 3 days in between). I just keep trying to extend the time in between but sometimes find myself feeling symptomatic within a week or so of fully dropping one of them.

@rcrossco_1 that dosage would also have me feeling like a million bucks within 1-3 days. so you totally stop after the 3rd day or so? and you just gradually noticed that the lengthy of time in between extended? I appreciate you responding as this really is similar to how my pouch seems to function!

@J'd up how long have you gone now in between these short treatment windows?

LGarb,

I’ve been doing this for about a year since rossco started this thread.   It works for me.  Crazy how even one or two pills immediately fixes the bowel movements.   Prior I would take one whole week of Cipro flagyl and I would get a flare up the following week again   At least now with a few random pills here and there I can keep it under control without feeling like crap with so many pills.   It might take some experimenting as everyone is different   Just don’t let the pouchitis get out of hand then it’s harder to deal with  

@J'd up posted:

LGarb,

I’ve been doing this for about a year since rossco started this thread.   It works for me.  Crazy how even one or two pills immediately fixes the bowel movements.   Prior I would take one whole week of Cipro flagyl and I would get a flare up the following week again   At least now with a few random pills here and there I can keep it under control without feeling like crap with so many pills.   It might take some experimenting as everyone is different   Just don’t let the pouchitis get out of hand then it’s harder to deal with  

It really is crazy. How long have you been able to go now in between? A couple of years ago I was able to get down to like 125 mg of metro only every once in awhile but then had two babies and all of that really threw me out of whack - mostly because I was very limited with taking any antibiotics. So totally get not letting it get too out of hand. Trying now to get rid of Cipro at least and work my way down. I may try the cold turkey thing though once we are through all of our summer plans. Appreciate your response!

Honestly, I don’t really get flare ups often.  Maybe twice a year.  But what I learned is that I will not take full one week courses of  Cipro flagyl anymore.  Doesn’t make a difference compared to a few pills a day for a few days.  I never considered 125mg as I have been prescribed 250mg.  And I like to over eat when I take the pills so it doesn’t upset my stomach.  Also by overeating it allows me to assess if the pills are working though the ability to control the poop in the pouch, the thickness of it and so on lol   Just need to get rid of that urgency. End of day even when I feel normal there’s always a minor level of inflammation.

@LGarb Did you have Pouchitis while you were pregnant at all? I’m currently in that situation weighting up risks/benefits of antibiotics

Very interesting read on decreasing the antibiotics. I’m just wondering about everyone who gets pouchitis on a regular basis what you do when the inflammation develops into an ulcer

@HeatherF21 posted:

@LGarb Did you have Pouchitis while you were pregnant at all? I’m currently in that situation weighting up risks/benefits of antibiotics

I was very symptomatic with my second pregnancy and was in the hospital a few times for dehydration right before she was born. I did end up taking some flagyl here and there in the 3rd trimester and then did cirpo/flagyl after she was born. I was very careful with when I was taking them and when I nursed her. Would also mix in formula if I needed to be strict with the cipro/flagyl. It was a really long year for me, to be honest, because I was trying to manage both. I do think the rollercoaster of hormones really impacted my jpouch after the second. I got pregnant with my second when my first turned 1 so I also did not have much of a break in between to get myself back to a good baseline. I'm hoping to be turning a corner now as I definitely have had way less trips for fluids and have finally been gaining weight back. Pregnancy/breastfeeding definitely take a toll on the body! Feel free to message me with any particular questions you have - wishing you all the best with the remainder of your pregnancy

I am not sure you can always link them.

I had superficial ulceration on a scope once, but no pouchitis to speak of.

I am also sure its possible to have awful pouchitis symptoms with no ulceration too! Bowels and biology is complicated.

Processed foods are killer for inflammation, and sometimes I get terrible attacks of cuffitis, which can come on rapidly after eating something dodgy, and oddly enough go away as quickly as it came, or linger for days sometimes weeks.

I did find super short term suppositories helped somewhat, but then more than a few days, they actually just made things worse.

Since I now mainly eat organic, 100% freshly prepared food (by myself) any rectal cuff inflammation is WAY less frequent.

I will tell you a story about Kiwi fruits. I used to love them, but got terrible bouts of cuffitis after eating them. One day a local supermarket had stock of fully organic Kiwis vs the regular, and I must have forgotten about previous issues, or I simply decided to take a chance, but I scoffed a packet of x6 Organic Kiwis, and literally nothing happened.

I went back another time, and as an experiment, got the non organic ones, same again, scoffed all four, BAM, cuffitis went berserk. After all had calmed down again, went for organic, and yet again all was well. Amazing really.

My suspicion is that we are only just touching the surface with all the harmful chemicals in our foods and environment. No doubt we are poisoning ourselves. The truth will come out in many years to come if ever.

It's so obvious really, we thought DDT was fine, until it wasn't and we banned it, we thought smoking was ok until it wasnt, we also thought Thalidomide was fine, until it resulted in horrific deformities.

All I can lean on are my direct observations, and processed, cheap, chemical and additive laden foods are never going to help anyone.

No coincidence that the US and the "west" have the highest inflammatory bowel numbers globally.

Problem for us folks when you are feeling crap, or have a flare, or are under the weather with a bit of pouchitis etc, is that you at that point crave, and NEED the easy, processed food options!

For me I have found that the main things that instantly help to damp down cuffitis are 1) the 8 cups of green tea I drink a day, 2) any sort of physical exercise, as simple as a 30 mins walk to work or the shops, 3) organic wheatgrass powder mixed with water of course, revolting, but gives me energy and helps things calm down.

@rcrossco_1 posted:

I am not sure you can always link them.

I had superficial ulceration on a scope once, but no pouchitis to speak of.

I am also sure its possible to have awful pouchitis symptoms with no ulceration too! Bowels and biology is complicated.

Processed foods are killer for inflammation, and sometimes I get terrible attacks of cuffitis, which can come on rapidly after eating something dodgy, and oddly enough go away as quickly as it came, or linger for days sometimes weeks.

I did find super short term suppositories helped somewhat, but then more than a few days, they actually just made things worse.

Since I now mainly eat organic, 100% freshly prepared food (by myself) any rectal cuff inflammation is WAY less frequent.

I will tell you a story about Kiwi fruits. I used to love them, but got terrible bouts of cuffitis after eating them. One day a local supermarket had stock of fully organic Kiwis vs the regular, and I must have forgotten about previous issues, or I simply decided to take a chance, but I scoffed a packet of x6 Organic Kiwis, and literally nothing happened.

I went back another time, and as an experiment, got the non organic ones, same again, scoffed all four, BAM, cuffitis went berserk. After all had calmed down again, went for organic, and yet again all was well. Amazing really.

My suspicion is that we are only just touching the surface with all the harmful chemicals in our foods and environment. No doubt we are poisoning ourselves. The truth will come out in many years to come if ever.

It's so obvious really, we thought DDT was fine, until it wasn't and we banned it, we thought smoking was ok until it wasnt, we also thought Thalidomide was fine, until it resulted in horrific deformities.

All I can lean on are my direct observations, and processed, cheap, chemical and additive laden foods are never going to help anyone.

No coincidence that the US and the "west" have the highest inflammatory bowel numbers globally.

Problem for us folks when you are feeling crap, or have a flare, or are under the weather with a bit of pouchitis etc, is that you at that point crave, and NEED the easy, processed food options!

For me I have found that the main things that instantly help to damp down cuffitis are 1) the 8 cups of green tea I drink a day, 2) any sort of physical exercise, as simple as a 30 mins walk to work or the shops, 3) organic wheatgrass powder mixed with water of course, revolting, but gives me energy and helps things calm down.

I totally agree with everything you mentioned. I am much more stable when preparing my own meals with good ingredients. I have also limited gluten quite a bit, which I believe is helping as well. I notice as soon as I have 1 or 2 days off my home routine (traveling, etc), my bowels start loosing up and sometimes have jpouch attacks (cramping, spasming, liquid stool, etc). It's usually if processed foods are involved, lots of gluten and alcohol. Definitely not a coincidence. Your organic vs non organic test is so interesting. I have consciously been swapping out for better ingredients because I also notice a difference.

Does anyone find themselves quick to feel dehydrated during "attacks"? I've been trying to manage that better as well so that I have a good plan in place if I feel like I'm losing fluids fast and the cipro/flagly hasn't fully kicked in yet. I also am trying to determine what's just a food attack vs what requires antibiotics. I always just jump to taking them because I'm not sure when it will calm down and if I'll end up having to go in to get fluids.

The Kiwi thing is funny, I tried it time and time again, with the same results each time. I stopped punishing myself, and from that point onwards vowed to only eat either locally grown farm foods from around my village/area, locally grown foods to the country I live in, and organic as much as possible, and avoiding all chemicals.

Even to the point where I will now buy beef mince, and a burger press, and make home made burgers, as ALL the store bought ones, even the top of the range expensive items, are rammed with preservatives. It's tragic really.

It’s true, you are what you eat.  And the majority of the food in North America is processed and toxic.  That’s why there are many inflammatory illnesses here.

Well here’s my question. Unless while having a cuffitis or pouchitis attack unless your scoped how do you really know if it’s that or food related?
I too eat organic. Does it make a difference, I’m not sure but I’d rather eat organic than non, difference in taste.
I try to balance fruit and veggies with fiber to bind otherwise I’m running to the bathroom.
In the beginning I was scoped, a lot, so I know I was dealing with cuffitis. But after the first few years my cuff looks great. Same as pouchitis. Unfortunately I had a complication from surgery that caused pouchitis symptoms all these years. So I know at first I had it via scope. Idk if it’s age related or I’m in remission due to Entyvio or the surgery fixed my insides. Drs are not sure themselves. Another story.
So if I have loose stools or pain I just treat it as food related and eventually it sorts itself out. Or I’ll take a pep to bismol. I know this sounds confusing and it is but let’s get back to the question. All these years from what I read pouchitis does not come on suddenly. I could be wrong.

"All these years from what I read pouchitis does not come on suddenly. I could be wrong."

Pouchitis might not, but cuffitis certainly does.