If it's pouchitis then she needs treatment. I understand that the diagnosis is uncertain, but so is every antibiotic concern you raised. Every medication has a long list of real negatives, each of which needs a bit of attention (but *not* exaggeration!). Adding imaginary negatives to the list just doesn't help. In any case, antibiotics certainly won't give her UC at this point - that ship has sailed.

I have taken antibiotics, 4 or 5 in rotation, continuously for 20 years to treat pouchitis and small intestine bacterial overgrowth. Were it not for antibiotics I would have lost my pouch long ago. My gut flora is screwed up, but probably would have been screwed up anyway because there is no backwash valve at the J Pouch inlet like there was at the colon inlet.

Most of the GIs who are actually knowledgeable about pouchitis know that there is a certain subset of patients who will develop what is called antibiotic dependent pouchitis. To eschew antibiotic treatment for us based on vague concerns about long term antibiotic usage is basically simple ignorance. I admit that I am unusually tolerant of all antibiotics, and the only serious side effects I have experienced were vulnerability to yeast infections and warts (which is avoided by common sense personal hygiene in keeping certain areas of your body dry) and some photosensitivity to sunlight with cipro. Cipro is a top gun for treating pouchitis and SIBO, and is not to be dismissed based on vague concerns, because the prospect of no treatment or ineffective treatment will lead to MUCH bigger problems.

I never took antibiotics before I developed UC. Before I developed UC I had salmonella food poisoning and never recovered from it. I clearly had and have autoimmune disorder and that is what causes UC. Even if the gut flora is or was screwed up by antibiotics, it's the defect in your immune system that causes the inflammatory response.

Thanks guys for the reply.  I decided to wait on the Cipro until Lilys blood test came back. Her inflammation marker was about 24 when she got a scope about a month and a half ago which is why her GI prescribed the antibiotic. The test came back and her marker is now at 11 which is normal so I'm glad I didn't start the antibiotic. Her frequency has also slowed down a bit which I'm contributing to eating better and the pelvic floor/bio feedback therapy she has been doing.

 

CT,  Im sure you know what you're doing and you have a lot more experience than I do but I wonder if you've ever tried seeing a doctor who uses a more natural approach?  Of course your gut flora is gonna be screwed up with all the antibiotics you're on. I know you weren't on them before UC but it certainly won't ever get better if you continue the meds. There had GOT to be a way to heal your gut.  Lily now goes to a DO who specializes in immune. She has been to naturopaths as well (some I admit were quacks), but I like her new doctor because he's not afraid to use medicine if necessary but he wants to avoid them when possible.  He has a few Crohns patients which he has been successful at treating and is why I went to him (Lily had UC).  I don't want to argue but there is obviously a REASON for the defect in the immune system. So WHAT is causing the inflammatory response is what I want to know. Over use of antibiotics? Sugar/processed food? Environment? Leaky gut? Or all of the above? There IS a reason, doctors just haven't quite figured it out yet. I believe its like 80% of the immune system lives in the gut. I am willing to bet that soon the medical doctors are going to wake up to this. They now agree that VSL probiotic helps prevent pouchitis. Some say it should be called "disease care", not  "health care" and that's just how I feel. Doctors (many) want to push meds instead of digging deeper.  Don't get me wrong, there is a place for meds but also a place for the natural treatments and healing the body instead of just pumping more drugs into our bodies. Unfortunately, I think that naturopaths are on one end of the spectrum and medical doctors are on the other so it makes it all even more confusing. Thats why I'm thankful that I found this DO who's in the middle.  For example, Lilys surgeon actually prescribed her valium for sleep!  Seriously?  The new doctor made some other (natural) recommendations and she's sleeping just fine!  I know I can't compare lack of sleep to pouchitis but its an example. Just like her GI that prescribed the Cipro when she clearly doesn't need it.  Why wouldn't he at least wait til the test came back?  I mean, it wasn't like she was in pain or having symptoms other than going 10x a day.  It's so frustrating getting so many opinions for the same issues. That's why I'm always questioning. There's got to be a happy medium somewhere. So please don't take this wrong, it's just all really scary and I'm just searching for everything and anything that will help my daughter have optimal health and prevent future problems now that she has no colon. :/

 

Good luck to both of you and thanks for the response. And if at some point she really does need antibiotics I will be on board, just want it to be a last resort.

 

 

Removing your colon does not = cure from IBD.  Essentially, your genetics are your genetics. My doctor (who specializes in IBD and has many pouch patients) says the older a pouch gets, the more likely *something* is going to happen.  Not that it's Crohn's vs colitis, it's more like, well, once ago, *something* triggered your IBD, the pouch's mucosa is changing, and some people start to have IBD symptoms. Some in earlier stages, too.  Pouchitis may be a form of IBD, and likely is, seeing that IBD pouches develop it *almost* exclusively over those who have them created for cancer reasons or polyps.  Can take away the colon, can't take away the genetics for the possibility of more bowel issues. 

 

My daughter has indeterminate colitis, and her docs (in a top 5 US children's hospital) try to exhaust medical treatment before sending them off to remove the colon, because of the immune system link to the bowel. So yes, VERY important to keep it, if it isn't killing you. My GI no longer says J pouches are a cure, nor has he for years. He now seriously counsels patients. Whether it's his view or true statistics, I don't know, but he tells everyone now going for surgery that ~50% of pouch patients or more will have some complication down the line. I had a rock star pouch and GI tract without my colon for 20 years, so I can tell you, things CAN be great. never thought I'd ever have an issue, but here I am. 

 

"Healing" guts:  it'd be GREAT to have that ONE cure, wouldn't it?  But the honest truth is that no two guts are alike. We eat differently, live in different places (which affects the bacteria loads in our GI tract)... So my gut bacteria and your gut bacteria are very likely not the same, which means what works for you may not for me, even among probiotics.  I've rarely had pouchitis symptoms as people here describe it, and I do nothing special. In fact, I ate everything and anything for years. But where I'm going with this is yes, trying better diets and/or homeopathic things are great... But some people just don't have those guts that respond. I myself shy away from antibiotics if I can (my first flare was likely related to indiscriminate antibiotic use; my pediatrician, because I did get strep at times, at the sign of ANY sore throat, went to ampicillan... My peds GI feel it was a likely catalyst to trigger my issues.), but the few times I needed Cipro, I NEEDED it. Nothing else was cutting it that I was doing, and overall I'm a fairly decent eater, and do a lot of the things you've mentioned. 

 

I do put a lot of worth into doing wellness things to maintain homeostasis, but just as IBD can be more aggressive in some, so can pouchitis or SIBO. SIBO can act like pouchitis, but does not affect inflammation markers.  I'm glad your daughter is doing better, though, and wish her some rock star pouch years like I had. 

One thing that hasn't been mentioned here is the use of a probiotic.  There are many brands on the market and I suppose each of us is affected differently by the various ones out there. It took me a while to find one that I feel helps me.  That said, I believe that a probiotic you are satisfied with may counteract the negative effects of antibiotics. 

My GI said that there is usually a little inflammation in our j-pouches but that doesn't mean it's full blown pouchitis.  Pouchisis can be caused by different things for example I had c.diff in my pouch - that's just one form of pouchitis. 

 

At 12 weeks I think the number of times she is going could just be normal.  Has she tried Metamucil and/or lomitol/imodium yet?  Personally I would first go that way to cut down on the number of daily BM's.  But that quit working for me I had to take antibiotics.  I can't that the big two used - Cipro and Flagyl.  Cipro caused c.diff one time I had it in my colon, so I can never take it again.  Fagyl was affecting one of my other health problems so I don't take it anymore.

 

I am pushing 60 and back when I was a kid I had constant tonsillitis and ear infections.  I had too many antibiotics/penicillin.  I'm sure my gut flora was destroyed by the time I was 10!  I became anemic from taking them at age10 - or at least that's what my doctor said.  I'd been visiting my grandparents all summer and was sick and on them all summer. I understand your unwillingness to give her Cipro.

 

I am one that is also rotating antibiotics for my pouchitis.  Thankfully I no longer have c.diff.  My GI, who is a specialist at the Mayo Clinic, said he has not had a patient that took antibiotics constantly who had a problem taking taking antibiotics for some other reason. He said we are not prescribed large doses as well.

 

I'm a mom too.  I know how helpless we can feel at times.  I think the holistic ways you are using will probably help her some. It's not a either or situation if you follow her GI's treatments and the holistic ones too.  (There might be some things she can't eat or take while on antibiotics.)

 

I tried for years and years with special diets, alternative treatments and supplements to help my UC.  Some of them worked for a while and obviously I didn't find a way to keep my colon.  Your daughter is young and hopefully is over the worst of it.  Most people don't have the complications that many of us on here do.  Before my surgeries the booklet my surgeon gave me said that 96% don't get cuffitis.  I ended up in the 4% that do - and it's chronic.  

I'm using wild oregano oil in an attempt to avoid pouchitis.  I'm only 7 weeks post take down, so I can't really say if it will work long term.  It's supposed to work in a similar fashion to cipro, but it's a natural product, so hopefully less or none of the issues associated with antibiotics.

Many drugs are simply natural products that have been purified, standardized, and well tested. Many natural products are toxic. I know people are trying their best to minimize the harm from medications, and some supplements surely provide benefits, but I think people are best served by approaching supplements with an abundance of caution, since their properties (beneficial and harmful) tend not to have been well studied. 

 

Deciding when to use antibiotics is tricky. I don't think there's any evidence that they cause IBD, nor any evidence that they cause pouchitis. We gravitate toward causes that feel more controllable (diet, antibiotic use, stress), not because they are necessarily responsible but because they are much less scary than bad luck. When we notice an effect (for example, from changing our diet) it can be exhilarating to think we now finally have control. After all, we can sure make ourselves miserable (with or without a J-pouch) simply by eating like a fool. But it rarely tells the whole story.

I agree with Scott.  I wasn't saying the antibiotic use caused my UC.  I was trying to say that as a mother I knew why she didn't want her daughter on antibiotics.

 

There's been a lot of chatter on here about oil or oregano.  I haven't tried it.  I've used probiotics as there are published test results about VSL#3 and those of us with UC and IPPA's. I take s.boulardii too as it fights off c.diff.  It has been tested to.  

 

I've had my DNA analyzed and do have some mutant genes that have some correlation to people having IBD.  Since I could find no one in my family tree that had IBD those genes are the only thing remotely related to me having IBD.  The chances are something like 0.10% chance that the the mutated genes had a small bit to do with me having UC. I don't remember where I even have those results so please don't ask me about them.  You would need to pay to have your DNA analyzed to even be able to find them.  It really was a waste of my time.  

 

I am currently in a study group of IBD patients' DNA for Pfizer through 23AndMe.  If you would like to be included in their study look them up on line.  I initially got into 23AndMe with spit tests of DNA for my dad, husband and myself.  I was looking for ancestor results and uncovered some interesting cousins.  I'm related to around 1,000 other people on there.  They will not tell you what your DNA results point to as far as health issues.  

 

There are other places I've uploaded the results there to.  That is where I found out about the "tendancy" towards many illnesses and diseases is just that, a "tendancy".  I know there are specific genetic tests for example breast and uterine cancers. I hope someday scientists will discover if there is or is not the genetic link but more importantly develop medications for IBD sufferers. 

 

I'm in a DNA study about migraine headaches through the Mayo Clinic too. All I needed to do was allow for some DNA testing that cost me nothing.  Since I am finally on a medication that is keeping my daily migraines away it may help to determine what medications to give to people who have similar DNA.  Knowing something like that would have saved me from years of headaches.  My neurologist there told me during my first appointment that migraines are inherited. My mother had them so in my case he is right.  It would be nice to know what's caused our illnesses.  I've looked for the reason in a lot of different places and so have other's in this site.

 

I don't think I am ready to be in a medication test group.  With my bad luck I would end up in worse shape.  I would either take the placebo and get worse or I'd take the new drug and get worse.  I use to be a glass half full person.....

P.S.  

FYI  The following link relates to Crohn's disease and genetic testing.

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1409853/

 

 

My surgeon suggested taking Citrucel once a day instead of Metamucil because the latter tends to add to the formation of gas.  So far, so good, although I really liked Metamucil, as well.....gas or not!

Thanks all for the feedback. My daughter has been on Imodium (max dose), Lomotil, citrucel, Fibercon and Metamucil. I feel the Metamucil helps most, maybe the Imodium but I think it stopped working.

 

I have tried to start her on VSL but it gave her horrible diarrhea and she went 30 times that day. Her GI said he had never heard of that but another doctor (intern) had warned me that that may happen. Go figure. I tried other brands with lower number of bacteria but that did the same thing.  I just read on a holistic website that people with SIBO can be intolerant to probiotics.  Has anyone else had a problem with this?  She was treated for candida and my bet is she has SIBO. She's been staying away from sugar and Im incorporating things like Kefir into her diet.  Its all so overwhelming!  One good thing, she is going into medicine, starting college this fall, and wants to specialize in GI. I will feel better knowing she will be educating herself on the subject and hopefully she will help others.

 

LouJr, what kind of probiotic do you take? 

 

SwollenColon, I have heard a bit of oil of oregano and I'd like to give it a try, thanks.

 

Blessings and good health to all of you!

Marybeth, re: probiotics:  I've tried many but the one that seems to work best for me is,  Puritan's Pride, Probiotic 10, item #31643.  I believe it's a personal thing and what works best for me may not be right for your daughter but give it a try.  Greek  yogurt is also part of my daily diet.  Also I eat as few foods containing gluten as possible but when I travel, this is difficult.  Best of luck. 

Also, nothing wrong with homeopathic products but as a believer in science, I feel a combination of both is a good idea rather than one over the other.

If she HAS SIBO, you might need that *one* course of antibiotics to knock it out, THEN get on board with all the holistic things to keep stuff at bay. Often once it's there, food changes alone just can't cut it; the overgrowth has happened.  If it was my daughter, and I was thinking that, I'd probably try a course of Cipro (10 days), and see if it helps. If it does, you may have your answer.

My PCP has some patients that take antibiotics regularly use "Align".  Please look over any Greek or other yogurt you buy.  Many have different kinds of sugar in them.

Very good/ important to know.  What kind of sugar would be appropriate & which should be avoided?

Thanks again all, I will use your suggestions!  Lily is pretty good about staying away from sugar of all kinds except fruit which she doesn't over do. This is a big change since she was a sugar junkie before. She knows she needs to stay away from it to be as healthy as possible. Heck, even us with colons should stay away from the crap!   Kefir is another suggestion that the dietician gave us, it has more good bacteria than yogurt so I'm starting to add it to her protein smoothies. 

Thanks again and take care!

Lou, consider investigating the FODMAP diet for sugar triggers.