Pkitty,

There are no solid and reliable answers to your first two questions. Chronic pouchitis is treated in a variety of ways but the most frequent first line of treatment is antibiotics like cipro and flagyl.

I have treated chronic "simmering" pouchitis, mostly successfully, for 17 years with antibiotics and other medications. Some do not respond well to antibiotics, and eventually lose their pouches.

There is no reliable crystal ball here on whether or not you will get pouchitis and if so, whether or not it will be treatable.

In considering surgery you should also take into consideration the risks of NOT having surgery. In my case those risks were greater in my mind, than the situation I have now. I have had the pouch for 20 years and even with pouchitis my quality of life is MUCH better than my 20 years with UC.

I was told that younger people have a better chance of not developing chronic pouchitis. I do not know how true this is. My husband (53years old) had his ileo reversed 11 months ago and he has had problems with pouchitis since. Like DJBHusky he cycles antibiotics and my husband also says he is so much better off than he was with UC. His quality of life is better as well.

After 19 years, with only periodic bouts of pouchitis that were always treatable, I now have developed chronic pouchitis. I am opting to keep trying to mange it for as long as possible. I think I have read that less than 10% develop chronic pouchitis, although most WILL experience various bouts of pouchitis from time to time. I don't think there is really much to do to prevent it, although some feel that probiotics will help prevent it or a low/no sugar/carb type diet may help. Treatments can include rotating antibiotics chronically, various ASA-type drugs or steriods in enema, suppository, or oral form (I am currently on rotating antibiotics, and Entocort-a "designer" steroid with fewer side effects than prednisone), biologics like remicade/humira, and perm ostomy as a last resort.

I would NEVER advise someone to NOT try the j pouch because they are afraid of pouchitis or chronic pouchitis. I got almost 20 darn good years out of my pouch, and hope to get many more with the various treatments above, before I am ready to cash it all in and go for perm ostomy. Ostomys do not come without their own share of hassles and headaches.

"Normal" pouchitis (once every year or 2)is a hassle, much like it is a hassle to catch a cold a few times/year. Chronic pouchitis is much more trying, simply because we all respond differently and so few docs even know how to deal with us. I got myslef to May CLinic in ROchester last fall, and feel blessed to have someone who has some experience with this issue-my smallish town GIs were pretty clueless when it came to chronic pouchitis.

I had my surgery at 12 years old and have had chronic pouchitis the whole time...I I would say that is young but I know there are exceptions to every rule...it wasn't exactly making any sense that I had UC to begin with...so I may be an alien. Just so you know I have 2 years of remission with my chronic pouchitis and with my pouch that I got in 1990 although it is in a ruff shape the pouchitis is not all that bad. I have needed multiple treatments but my symptoms are mostly annoying. The only big issue I face with it is when it makes other things worse and harder to diagnose things.

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I would NEVER advise someone to NOT try the j pouch because they are afraid of pouchitis or chronic pouchitis. I got almost 20 darn good years out of my pouch,

I would agree with this having treated chronic pouchitis for 17 years which I would consider "darn good years" because although my scope pics do not look great, I am primarily asymptomatic with antibiotic treatment. It may or may not be an issue for me down the road but I am just going to keep going until then........

I too have chronic pouchitis have had it since I had the surgery when I was 17 8 years ago. I take Cipro twice a day and it seems to work pretty well. I cannot take Flaygl because I'm allergic. It took about three years of mild pouchitis every time I had a scope done for the doctors to diagnose it as chronic and I feel much better taking the Cipro all the time.

Hi all! With respect to those of you with chronic pouchitis, what are your symptoms? I was in the ER with a drip containing cipro, flagyl (which I think gave me a migraine), morphine, and something else for my stomach, for about four hours. I left with a migraine (as I said), but my output had some substance to it, unlike the watery stool causing a lot of anal problems. Is that because of the antibiotics? Do we not become immune to cipro if we take it all the time? I am wondering if I should be taking it regularly? Any thoughts? Love you all - you guys help me so much.
Sally

Even if you don't have pouchitis, antibiotics will thicken the stool because it reduces the output (a fair amount of our output is bacteria). But, since you have a very short amount of small bowel left, it is going to be an uphill battle for you. I don't know that you want to be on antibiotics chronically unless you actually have active inflammation going on.

It is not that YOU become immune to antibiotics, but the bacteria become resistant. That is how we create the super bugs that are the bane of the medical field right now...

Jan

quote:

With respect to those of you with chronic pouchitis, what are your symptoms?

Watery stool, urgency, crampiness, feeling of incomplete evacuation.

Regarding cipro: I have taken it for 17 years. There is no immunity/resistance because I rotate it with other antibiotics every few weeks. As long as you cycle antibiotics every few weeks and no more than a month, you can take them and no immunity or resistance will build up. If you take cipro chronically for more than a month without rotation, you will not only develop a resistance, you will also expose yourself to the mother of all yeast infections once all the bacteria in your skin are killed.

The best rotation advice is to take xifaxin after a regimen of cipro and/or flagyl. Xifaxin is not really absorbed and stays in your gut. Thus, your skin bacteria has a chance to regenerate after being genocided by cipro and flagyl.

Makes perfect sense

Jan, with all your knowledge, would you recommend I take cipro periodically, and if so, how often?
Sally

I really don't know Sally. With only five feet of small bowel left, you need to be careful. You don't want to risk a superinfection, as you have no wiggle room if something goes haywire. I wouldn't take more than 5-7 days out of 4-6 weeks at a time if I were you, unless there was diagnosed pouchitis. I presume you take all the slowers you can. Have you tried experimenting with probiotics?

Jan

any NEW treatments besides Flagyl and prednisone for pouchitis sick of getting Candida along with the pouchitis I have increased my probiotics to 50 Billion NOW brand, and eating Greek yogurt and drinking a gallon of water daily?

Alvis, you could substantially increase your probiotics. VSL #3 DS has 900 billion CFUs/packet, and you can take 4 packets/day for active pouchitis. I think that's well over 50x your current dose.

Folks are also getting good results from various diets that are very low in carbohydrates (sugars and starches).

I will look into that + been under tremendous stress lately BUT that is improving I take 1000 mg of flagyl a day since about 2002 before it was only 500mgs and take dexilant for acid reflux alsohad wrap surgery for reflux in 2000 as of last year it hs only loosened 10% according to my GI but this constant foul smelling stool and off an on IBD I just want to feel better I only have 1 cup of coffee a day and try and avoid chocolete that seems along with processed sugar are # 1 no-no's and drink very little Alcohol any diet ideas would be great i am on the road a lot is subway a good food option?

Also for short term 7-10 days Prednisone is a good option JUST to get things under control 20 mg for a few days then 10 mgs for a few days then 5mgs for a few days then I stop

One last bit of info Scott, my doc (primary) put my on carafate for my reflux along with the dexilant it made me so constipated my hemmoroids are just going nuts I can feel stool going into my pouch I have really been straining to have a movement and I think this fired up my hemms BUT I am not sure what it is my butt is so sore and stool sometimes oozes out a little and the pressure go away for a while if I pass gas? do any othese things sound familiar?

One other thing Scott maybe you know why? when my Pouchitis isn't bad or under control my stool smells so bad and lingers! BUT when I get an attack like now the odor is almost gone? any idea about that + I am taking 3 of 50 billion probiotics now and see if that makes a change?

That's a lot of information. Although I haven't yet tackled the low-carb diet myself, and others can surely tell you more, you asked about Subway. The stuff inside the sandwich is probably fine, more or less. The bread though, is high in carbs. It's very difficult to follow a specialized diet while on the road.

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when my Pouchitis isn't bad or under control my stool smells so bad and lingers! BUT when I get an attack like now the odor is almost gone?

My theory on this is that when you have pouchitis, everything moves through very quickly and doesn't get the chance to hang out in the pouch and build up odor. When your pouchitis is treated and you are only going say 4 times a day, the stool is sitting in there much longer. This applies to gas as well for me. I don't have gas issues when I have active pouchitis as everything is constantly moving through. The gas only gets a chance to build up when my pouchtis is treated and I'm not going as often. However, there isn't a whole lot of gas anyway when the bacteria is under control.

Well folks was in the ER this morning with terrible abdominal pains and found out No Bowel Obs. NO Pouchits, Hemorrhoids yes AND my stool is hanging in the small intestine the have me on 4-5 muralax a day then in 2 days follow up with my GI the ER was in the same building as my GI so they were in contact with him through out the exams, I have no fever white blood count was perfect no dizziness and no loss of appetite classic pouchitis for me just mass constipation, does anyone have a theory on this?

Well, constipation is one of the more common side effects of Carafate, as you've found. Chronic constipation is what it sounds like you have.

Perhaps it is time to to discontinue that, if you have not already.

Jan

You are correct that is what they said at the ER I am following up with my GI and the ER said there was a LOT of stuff in there I can feel small amounts pass into my pouch that area where the intestine meets the pouch is so sore as stool passes through and then the pouch hurts simultaneously then it subsides for a while this may have been some of my problems for 6+ months only now got REALLY bad they have me taking Muralax 4-5 a day starting today and they gave me a suppository the carafate only made things worse I haven't taken since Sat. only 1mg BUT ER said it didn't matter 1 mg is all it takes to constipate I don't have any Pouchitis symptoms nausea, loss of appetite, dizzy spells BUT do have urgency, and pain in the puch BUT again probably caused by constipation

Another question WHY would I always have constipation problems besides meds OR a obstruction?

Some people just have slower peristalsis. Could be aging, early diabetes, any number of things. Perhaps it is just plain old IPS (irritable pouch syndrome), which is the same as IBS, a functional disorder.

Jan

Thanks Jan the pain is almost unbearable at times really got bad Monday and today like every 10-15 min the pain comes from stool trying to pass then when i go only a few drops??? hopefully the muralax will get things flowing

Sounds like you are really backed up. All that time on antibiotics and bowel slowers probably did not help. I like to keep things on the runny side. Thickening things up does not really reduce my trips to the bathroom that much. Plus, I believe that having the stool move through too slowly just promotes bacterial overgrowth.

Anyway, constipation in the small bowel is much more painful than in the colon because the small bowel is not as stretchy as the colon or rectum. So, when it is over-full with gas or stool, it triggers stretch receptors that are perceived as pain.

I am unsure why, but some people after colectomy have motility issues where they struggle with constipation, while most of us struggle with watery diarrhea. Frequency does not mean diarrhea, but many assumes it does and keep taking bowel slowers, when they really need to clear things out.

Jan

Jan, after all this time I am still not sure if I am dealing with pouchitis, or hemorrhoids right now off and on at the bottom of my pouch I get a sharp stabbing pain that comes and goes and urgency? BUT have no lost appetite or dizzy spells or fever any blood is on the end of the tissue NOT in the stool? or is this cuff?? whatever it's called I had a sigmoi.... a few years back and Doc said opening was great and didn't need dilation? any thoughts would help I have to say I am very worried about this BECAUSE as a entertainer it is hard to sing and entertain when you have this problem I also deal with TMJ/TMD I have a dislocated Jaw on the left side and I KNOW this is also causing havoc with my voice going next week to get treatment on that I had it under control for over 15 years now it is back with a vengeance P.S. as you may have guessed by my screen name I am an Elvis Impersonator

Almost forgot I don't feel nauseated either which accompanies pouchitis usually.

Everyone seems to have their own version of pouchitis. But one thing that is hallmark and consistent for all pouchitis patients is frequent, loose stools. Frequency alone is not pouchitis, as you can have frequency because you are not emptying enough, either from anal stricture, constipation, or other obstructive issues. Bleeding can be from cuffitis, anal fissure, anal irritation, hemorrhoids, etc. Bleeding is not usually associated with pouchitis, but can occur if you have ulcers.

Some people get nausea with pouchitis, but it is not typical for most. But, if you always have nausea with pouchitis, then that is typical for you. Still, you say that now you are not sure that you had pouchitis each time you were treated for it. So, I am not sure that your nausea was pouchitis related. Chronic constipation can cause nausea too.

Jan

Jan ,

here is another question what have you noticed from others are the long term effects of being on flagyl? I have been on it since 1997 started as 500 mgs a day now 1000 mgs a day last 10 years. If i don't take within 2 days i get cramps gas stinging in the pouch dizzyness, urgency ex.

Turns out I had the Cufftis? problem Doc. dilated inside and I feel much better constipation was caused by combo the cufftis and carafate

Glad the dilation was helpful. Anal stricture can lead to both cuffitis and pouchitis, due to fecal stasis from incomplete emptying. I am a bit surprised that you went so long without anyone discovering the stricture! You'd think someone would have done a simple digital exam somewhere along the line...

The primary pitfall from chronic use of Flagyl is peripheral neuropathy. It is not a given that it will occur, but your risk increases with the length of time it is taken and also the dose. Once you develop the symptoms of tingling and/or numbness in your hands or feet, you have to stop taking the drug. If you stop it in time, the neuropathy is temporary. If you continue with the drug, the neuropathy becomes permanent.

My cuffitis was quickly suspected once there were a few courses of Flagyl that only temporarily improved my pouchitis symptoms. Once my GI did a rectal exam, followed by a scope, cuffitis was confirmed and I was placed on Canasa suppositories. After a couple of months, I switched to oral sulfasalazine for maintenance. I never had any stricture, so my treatment was more straight forward.

Jan

I do feel better for sure been on Flagyl since 1997 no numbness in hands or feet much and none that stays maybe if I bend over for to long or something but other then that I am OK if i stop taking within a few days i get pouchitis wish they could figure out how to stop this??

Jan one other question since I have been on a high dose of Flaygl since 97' do you think that this is the source of all my yeast infections and all the excess mucus I experience?

I would suspect that is the case, as antibiotic use is associated with yeast infections, even without chronic or high dose exposure.

Jan

Thanks Jan it has really got bad the last year and a half i would say don't sleep right I am sure that is part of the cause taking more probiotic, Coconut oil ext anti-yeast stuff AND I was also suggested iodine drops Dr. Lugols? trying that only 4 drops a day don't want to over do it homeopath said 22 drops a day! hopefully that will help I bet that is why i have all the mucus and drainage?

Anyone been on Flagyl for years as I have and anyone have side effects? and what are they? I am doing better the Iodine I don't think helped but increased my probiotics and Greek yogurt and that has helped I think

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Anyone been on Flagyl for years

For 20 years I have rotated cipro and flagyl, augmentin, xifaxin and other antibiotics (but those 4 primarily) to treat chronic pouchitis. The only side effects I experienced were the occasional breakout of yeast infections/warts in my legpits and armpits (which is counteracted by keeping those areas dried and anti-fungal powdered) and some sensitivity to sunlight with cipro.

My told GI specialist told me flagyl will destroy C Diff and I suspect that is why I never had C Diff.