I had good results with cipro and pouch function but after about ten years on and off it, my dr decided I had ulcers in the pouch.  I've been on remicade for four years and it is much more effective than cipro.  So  I don't know what I was treating all those years.  I frankly cannot tell the difference from the symptoms.

Jerry

Semi Colon,

 

Your post makes no sense to me.  You say that remicade is much more effective than Cipro and then two sentences later you say you can tell no difference from the symptoms. Which is it?????????

 

I have been told that remicade is a "last line of treatment" for pouchitis, if antibiotics, entocort and pentasa all fail.

 

My experience with Cipro is limited to this past August and this week.  Both times the drug was prescribed at the same ER (different MD's) for the same condition diagnosed as ProctitIs. These doctors aren't GI's but my symptoms are those of Pouchitis (which I suspect). I might add, my current gastroenterologist refused to prescribe the drug.  In any event, the symptoms have improved greatly during the two days I've been taking Cipro.  While I understand the need to be wary of over prescribing any antibiotic,  from my limited lay experience this is a wonder drug if used properly.

Gentle Now,

 

In your post you create a distinction that I have never heard of and as far as I am aware does not exist.  Pouchitis is inflammatory bowel disease.  All IBD is caused by an autoimmune disorder.  There can be no confusion over something that doesn't exist - the supposed distinction between pouchitis and autoimmune disorders.  I still do not understand the post of SC and it is not really explained by a fictional distinction.

I don't mean to be fictional... Maybe I'm just good old fashioned wrong!  :-)

i thought pouchitis is a bacterial overgrowth condition - treated by avoiding carbs that feed bad bacteria, taking probiotics, and antibiotics. I didn't think it's an autoimmune disfunction like Crohns or UC. Is it?

 

(and Lou, I agree. Cipro sure seems to work wonders. Makes me wonder what would have happened if I had cycled on it back before surgery if it would have helped the UC)

The inflammatory response that is caused by pouchitis is due to the same underlying autoimmune disorder that caused your UC.  It's just a different manifestation of it. Colectomy doesn't cure autoimmune disorder.  And some people have SIBO but don't have an inflammatory response. Remicade would never work on pouchitis if this supposed distinction was correct, but the fact that Remicade IS used shows that tamping down the immune system treats pouchitis.  Killing the excess bacteria causing the immune response with antibiotics also treats pouchitis.  It's just two different ways of attacking what is causing the symptoms.

 

Remicade is a last resort or last line of treatment because suppressing your immune system opens you up to other infections and therefore it is a potentially more risky treatment than antibiotics, which are just killing off bacteria and not suppressing your immune system.

Oh man. Now I have to rethink everything. So, does this mean that everyone who has had  pouchitis actually has Crohns (since UC would have been limited to the colon)?

Pouchitis is a different manifestation of IBD than Crohn's or UC.  The notion that all IBD is either UC or Crohn's is wrong, ignorant, scientifically disproven for many years, and essentially is the equivalent of saying that the Earth is flat based on current science circa 2015.  The insurance and medical industry perpetuate the 2 disease classification because to do otherwise is not convenient.  There are hundreds of subsets of IBD and one of my pet peeves is that people continue to believe this pigeonholing nonsense.

 

It doesn't matter what you call what you have, you have what you have - whether you call it Crohn's or Pouchitis or Red Swiss Cheese, and you need to treat it.  Labels are for insurance companies- they are not meaningful to people who have educated themselves about IBD.

Hard for a person to know anything else when the two classifications is all that they have been told by all their medical experts for years. Thusly people come onto these boards to learn from the gentle wisdom of others. 

 

Thank you you for sharing. I have a lot to think about now. Not the least of which is still how to handle the dang fistula. :-/

Gentle Now,

 

A fistula is some evidence of Crohn's, but not conclusive.  I have treated pouchitis for 20 plus years and never had any fistulas, fissures, abcesses, just ulcerated areas in pouch and above the pouch, which is caused by backwash stool/SIBO.

 

Don't take anything I said personally - it just drives me bananas when people bank the 2 disease classification as a scientific fact when it has been completely disproven.  Through the years I have seen numerous "I Have Crohn's And the Sky is Falling" threads which are absolutely unnecessary and it's just a bunch of stress based on science fiction in many cases.  I was suspected to have Crohn's when there was inflammation found in my neoterminal ileum but fortunately I have been treated by top flight GIs who know exactly what is going on.  Nothing has changed, my treatment has worked, and the focus should be on treating what you have, not giving it a name.

I have had chronic pouchitis on and off for four years. I just had a scope that showed mild inflammation and a small ulcer in my pouch. I have had scopes that have showed other small ulcers in different areas of my pouch. I have had anal fissures for awhile now (also chronic and very painful at times), but no fistula to date. No one has diagnosed me with crohn's after numerous pouchoscopies over the last four years with the same results.

 

In my case, I am being recommended for a minor procedure to cut some slits in the anastomosis as I have a stricture which causes fecal stasis, hence pouchitis and the ulcers. The only difference in this last scope is the ulcer is mid pouch so that makes me curious about the fecal stasis suggestion as prior ulcers and inflammation have always been in the distal pouch above the anastomosis.

 

I am just as confused as others on this board regarding the cause of my pouchitis as I am leaning towards believing it is more auto immune related as the pouch tissue does tend to become more like colon tissue over time and adaptation.  My surgeon did not recommend remicade due to the side effects, but I also have been on cipro more than off it over the last four years and it does work to thicken the stool, slow things down and calm the pouch.  I wish my pouch scopes were clean, but they never are.

 

Sometimes I think GI's get a bit alarmed at ulcers in the pouch and that may be why they tend to diagnose crohn's versus chronic pouchitis and I believe anytime they see a fistula it is a slam dunk crohn's diagnosis.   

Thanks CTBarrister. I appreciate you willingness to contribute to these questions and share what you know - whatever the flavor your passion adds.

 

What you're saying makes sense and does take the edge off the sky falling aspect. Just treat it. So far, it seems that abx would be the smarter first option... Though if Remi can actually cure the fistula, then that choice makes sense.  Of course, now I question whether it really can, so if anyone has information there, I'd sure appreciate hearing those experiences. 

I also have a stricture causing fecal stasis, but mine is located at the J Pouch inlet, which is why the backwash is causing ulcers upstream in the neoterminal ileum.  I was able to reduce the stricture through diet.  As time has marched on I have become convinced that diet has become more and more critical in managing my pouchitis.

Let me explain.  I could not tell if my discomfort was from ulcers in the pouch or an inflamed rectal cuff from pouchitis.  Both felt the same to me.  However since i have been taking remicade, I have no ulcers in the pouch nor inflamed rectal cuff.  It has been more effective against the pain regardless of the root cause.

Jerry

So here's my two cents, if worth anything, again.

I was the poster child for J pouch surgery for 20 years. I had, at the time, a clear cut case of UC pancolitis that eventually, at age 19, did not respond to the modalities of the day (ie. high dose IV steroids, bowel rest, and TPN). That was why surgery became a necessity.

Flash forward to 2012. I began to feel poorly in some weird "UC light" way. Hard to explain, but I just in a GI sense began to feel "off."  Then 12/12/12 (the day of infamy) I found a lump right near my anus. Long story short, I developed a perianal fistula after an abscess. I continued to feel blah and poorly.

My CRS recommended, after my seton placement, a GI who specializes only in IBD and who has a lot of J pouch patients. He has told me that "old" pouches are coming to him with "new" IBD type issues. Our pouch's mucosa slowly changes over time to more "colonic" tissue, and he said if he doesn't say biopsies are from J pouches, the pathologist will even read them as "colon."  Cellular mutations happen in there; it's all very weird. BUT. This conversion HE thinks is triggering our immune systems to refire, like you can take the colon out of the girl, you can't take away her genetics. Hence: new IBD issues are cropping up.

Is it Crohn's?  Not necessarily. IBD is a HUGE umbrella of diseases, and as CT said, the "Crohn's vs UC" argument exists mainly only for the ease of insurance purposes these days.  Think about Crohn's, anyway. There is perianal Crohn's, ileal Crohn's, Crohn's colitis, Crohn's affecting other places: Crohn's patients rarely present the same way!  Yet we call it all "Crohn's disease."  Not necessarily the best way to classify such a varying type of illness, but we still do.

Does he think *I* have Crohn's?  He's non-committal on that, but for what was necessary to get me approved for Humira. I did get + inflammation markers, and Humira has stopped the worst of the overall blahs, overall GI "discomfort," and low-grade fevers I was getting (didn't heal the fistula), so I'm on it til he scopes me in October, then we will make another plan...my pouch, apart from a few apthous ulcers scattered around it and in the neo-ileum has always looked pretty good. I did start to have some stricturing/narrowing issues at my outlet (another "Crohn's" thing, but also an issue of our surgery (though I never had that issue in two decades/until the fistula popped up). I now self dilate and use Canasa suppositories 3x/week. I've also had to resort to some steroid tapers, too, and things are great on them (except that they're steroids, and simply systemically terrible for you!)

All this from a girl who ate anything she wanted, and took zero meds, for over 20 years!  I'm now on Humira, periodic steroids and Cipro, Canasa suppositories, vitamin D, B12 injections, plus I've developed dry eyes (another IBD issue), and take meds for that. Argh!

My daughter also developed IBD. She presented as I did, we really were set to call it UC, but her scope showed "skip lesions" which = a more indeterminate dx, so her docs call her Indeterminate colitis. No other GI involvement but in her colon. She also has entropathic arthritis that started when she was five, six years before her first flare. She is on Humira, methotrexate, vitamin D, and folic acid.

Remicade does indeed have a track record of closing IBD fistulas. We tried Cipro to see if the fistula would do better on a low-dose abx (I'm strongly intolerant of Flagyl), but it really didn't (though my GI often puts patients who respond/feel better with an abx on Flagyl or Cipro low-dose. The abx won't heal the fistula, but some find their drainage and pain decreases on it. However Remicade and Humira some of the time actually heal the fistula. That's partly why I tried Humira. I'm not even opposed to Remicade "down the line," but we aren't there yet. I'd say it's kind of your choice here. If the fistula is tolerable on the abx, and you're ok with things, that might be enough. But if you want the chance to try to cure the fistula, Remicade may be more tolerable to you. It's kind of just that: what you find acceptable in your life. And you can likely also take both meds, with monitoring, at first, then taper off the Flagyl and see what happens. It's kind of a crap shoot, I suppose.

Hope this helps!

I think if I had a fistula on top of chronic pouchitis I'd try a biologic. Any treatment can have serious side effects: the lists for Cipro and Remicade are both quite ugly. The worst side effects tend to be rare for drugs used to treat all but life-threatening conditions, since they wouldn't get FDA approval otherwise. Sometimes you just have to roll the dice.

I am on the same page as Rachel. Long term pouch with more recent chronic pouchitis issues. I was already on biologics for enteropathic arthritis, so maybe that helped keep it at bay this long. I am all for what keeps me functional. 

 

A fistula does not mean Crohn's, but it can lean the diagnosis in that direction. The medical literature says that if the fistula arises from the suture line, it is not likely to be Crohn's related.

 

In my mind, if Cipro works, go with that until it doesn't or you get side effects. Biologics are not the big, bad beast that some fear them to be. All treatments have potential downsides.

 

Jan

Jeff,

Glad to hear you and others are getting relief with remicade. I have suffered so terribly with my pouchitis and cuffitis/anal fissures with the level of pain that I broke down and was sobbing in my GI's office last week.  First time I have ever done that. I am surprised I have not had any infections with how bad my anal fissures have been and everything I have thrown a them (lidocaine, rectiv, nifedipine, vitamin e, coconut oil, calmoseptine and all kinds of other barriers and ointments).   I have not been offered biologics after numerous scopes and will discuss at my next meeting with GI next week.  I am so torn about this as both my new GI and prior one have been pushing surgery for the stricture and possibly biologics could help with the inflammation that may be aggravating or causing my stricture. I also have awful muscle and joint pain that may be IBD (or cipro) related. I would be open to trying a biologic rather than resorting to more surgery.

 

At my last scope my cuff looked good and I have been emptying better since dilation but we all know that only lasts so long. Once the inflammation acts up again, the opening will close. I am not fully convinced my stricture is caused by scar tissue alone that surgery will correct and could possibly just make things worse. I am hopeful though that I have a plan moving forward.  At any rate, you have to trust the experts and I bet a lot of my issues will be resolved, once I have the procedure to open up and release the anastomosis a bit.     

 

For anyone from NE or CT looking for a good surgeon, Dr.Reddy at Yale comes highly regarded. He is on the young side, but is exceptionally well versed with jpouches and surgeries related to them and he accepts insurance!!!!!. He has done a number of the procedures similar to what BO Shen does (I am sure not as many as him though) with the needle knife cutting procedure and actually  does a somewhat new procedure where he actually cuts out the scar tissue and drops one side of the pouch down and re-staples. He advocates this procedure versus mucosectomy and pouch advancement due to the leakage risk. 

  

Jeane,

 

Based on what you have reported about your symptoms, I think you might be a good candidate for improvement from Remicade.  I certainly think it should be attempted before surgery.  From what I heard it may take a while before you observe improvement with Remicade - so the question becomes will you get any worse and deteriorate further and/or will the stricture get worse in the intervening period before the Remicade kicks in.  The level of pain you have described doesn't sound good.  Also, the joint pain, if autoimmune related and not cipro related, will improve with Remicade. Good luck and let us know what happens.

I sure appreciate you all giving input. (And I know I I've asked you about fistulas before, Rachel, I learn something new each time you share). 

I meet with my docs next week... I'll update with what we decide. 

Thanks again!

Just an update in case anyone is followong... I went with Remicade. A chance to get rid of the fistula is worth it.  A three hour nap at the hospital. :-)

i did refuse the accompanying iv steroid. I am, however taking imuran at least for a few months. 

hope all are well!

Was the IV steroid intended to make the Remicade safer (by reducing an immune response to it)? I had IV Benadryl with Remicade for that purpose.

Yes, that was why. I just took a benedryl pill and did fine. Of course, I had been on remicade before, so we knew it should be good. 

My diagnosis is still listed as UC in my medical records - that goes along with what CTB said. They biopsy reports sometimes includes UC because of my cuffitis - that really is UC because it is the part of my rectum that wasn't removed.

 

Pouchitis can be caused by many things.  C.diff infections are a type of pouchitis.  

 

We got rid of our colons but still have the IBD disease. IMO IBD goes out and searches other parts of our bodies to torture. 

Absolutely correct.