I'm very confused. What's the difference between Pouchitis and Chron's? And if you have cronic pouchitis will you eventually develope Chron's?

For the past 10 years I've been dealing with what I thought to be pouchitis, given I dont have more than 3 to 4 BMs a day but they are very loose and I have gas cramps, constipation, and everytime I've been scoped the pouch has inflamation, so the doctor gives me antibiotics and it usually cures the symptoms... but they eventually return. Last couple years though I have NOT responded well to the antibiotics, in addition I had to go to the ER because my hgb was a 7 and I needed to have a blood transfusion. For some reason I've become severly anemic! Just had another transfusion the other day - my hbg was 8.1 and, to top it off, my GI now thinks that its not pouchitis, it may never have been pouchtitis, he says it may never even have been ulcerated colitis! He thinks I might have had Chron's from the very begining!

I mean, this blows me away! I can't even begin to express what I'm feeling right now... other than WTF!?

Keep in mind I did all the tests - the blood, the biopsy, the video pill you swallow, and they all came back negative for Chron's... but he believes the tests aren't accurate enough, he believes it's still Chron's and doubts it's pouchtitis... I'm confused!

I'm having a flex-sig done next week so he can take a look at the pouch and probably further up in the gut as well to see what's going on. He thinks the test will show it's Chron's. My question is - How far up the gut can pouchtitis go? And whats the difference between Chron's and pouchitis? Isn't it all part of the small intestine? Isn't the small intestine part of the pouch? If it's inflamed is that considered Chron's? ... I'm confused. Any advice or thoughts would be greatly appreciated. Thanks.

First of all, it has become apparent that the distinction between UC and Crohn's is not clear, and the disease manifests itself differently in different persons. In fact it's also true with Pouchitis as it comes in many different forms and degrees of severity, some resistant to treatment and some not.

By definition, UC only effects the colon. Therefore, pouchitis is a form of Crohn's, if you accept the old school notion that all IBD is either one disease or the other.

I think more modern schools of thought recognize that while all treatment is driven by a diagnosis, diagnosis is not always easy and all disorders are not neatly characterized as either UC or Crohn's.

I have Pouchitis for 15 years after treating UC for 20. I also have had an ulceration spotted in my ileum above the Pouch, and I also had the Prometheus test and the CT Enterography which was negative for Crohn's. But unlike you I continue to respond to antibiotics, despite a lingering question of whether my original diagnosis of UC was correct, which I still believe it was.

Pouchitis is a different disease. I base this on experiencing it for 15 years and UC for 20. I know how my body felt with these 2 diseases. They are/were different diseases with different symptoms. I WAS CURED of UC. I have not been cured of Pouchitis.

If you treat it as if it is Crohn's, it might result in you feeling better. Whether that diagnosis is actually correct is not important; what is important is how you respond to the treatment assuming the diagnosis.

BTW, did it occur to you that your Doctor needs to justify his treatment with your insurance company? It may be easier to treat you if your operative diagnosis is Crohn's whether that is accurate or not. I think you are upset for the wrong reasons. What you should be upset about is the treatment working or not, not labels that the best experts in the world cannot always say are 100% accurate, in any case.

Also, to answer your question, the area of inflammation found above my pouch was 30 cm above in the ileum. I still respond well to antibiotic treatment.

This message has been edited. Last edited by: DJBHusky,

Well, to the extent of my knowledge you can't treat either UC or Chrohn's with antibiotics, so that would suggest pouchitis is an actual infection, while the other two (presumably) are autoimmune disorders.

On the other hand, I think someone here (can't find it right now) posted a link to some research a while back that suggested that some cases of pouchitis were actually provoked by UC inflammation of the pouch cuff, while other cases were apparently brought on by having an 'irritable' pouch (I'm not sure what exactly that would cover).

In theory I'm guessing anything treatable with antibiotics can grow immune or very resistant to them, which could be what has happened?

Anyway, since there might be several factors in play it doesn't really matter what exactly it is, but it does matter that the treatment you receive is the one that makes you feel better, as DJBHusky suggests.

So, having pouchitis doesn't mean you got Chron's, but it doesn't mean you don't either. I think. Hope this is at least mildly helpful, it's gotten late again..

Brows,

I believe Pouchitis is an autoimmune disorder characterized by an abnormal response to normal bacteria in your J Pouch. Antibiotics kill the bacteria, which in turn mutes the autoimmune response.

Also, antibiotics are a treatment for Crohn's, so the fact that pouchitis responds to antibiotics does not rule out Crohn's. Even though the pouch is made of small bowel, inflammation in it does not necessarily point to Crohn's, because of its adapted use. Small bowel is not made to store stool, so more likely to become inflamed when there is fecal stasis. However, the fact that those who have a j-pouch without a history of IBD seldom get pouchitis, that would mean there is an autoimmune connection there.

IBD diagnostics are not easy.

Jan

Hm, didn't know that, probably because it doesn't say anything about antibiotics and Chron's in the IBD book they gave me when I was first diagnosed. Maybe it's getting old (or was a bit lacking in the first place).
Wikipedia, for what it's worth, does mention antibiotics and in particular flagyl and cipro "to treat Crohn's that have colonic or perianal involvement, although, in the United States, this use has not been approved by the Food and Drug Administration.[103] They are also used for treatment of complications, including abscesses and other infections accompanying Crohn's disease.[8]"

So if pouchitis is a response to normal bacteria in a J pouch, does that mean that certain probiotics might actually make things worse? This is obviously making the assumption that the reaction is to something (also) found in probiotics...
Jan: Hope I didn't sound off like I thought IBD diagnostics are easy, more likely I'm more confused than anyone.

JoelSmith: Hope I'm not derailing your thread. I can't really imagine what it must be like to get a message like that, other than.. Well, 'WTF?'

Brows,

There are "good" and "bad" bacteria in your intestinal tract. The "bad" is what provokes an inflammatory immune response and causes pouchitis. The "good" is what is needed in your intestinal tract and, through competitive inhibition, is believed to crowd out the "bad" bacteria. That is how probiotics works in some cases. Antibiotics kills all of them to some extent. But note that the "bad" bacteria are just normal bacteria that don't do anything for people that do not have any autoimmune disorder or are not prone to pouchitis. We all have this bacteria, and some of us are provoked by it and some are not.

When all the bacteria get killed, the fungi take over based on the environment not being populated by their natural competitors, the bacteria. That is how the dreaded yeast infections and fungal rashes get started. In some cases, it's antibiotics related.

This message has been edited. Last edited by: DJBHusky,

Thank you for your responses. I had the flex-sig done on Friday morning - the pouch as it turns out is VERY inflamed and there are yellowish ulcers all over. The day before I had to do a prep with HalfLytely and Bisacodyl tablets - VERY unpleasent to say the least. I'm actually wondering if that did not exasperate my condition - I was feeling okay the day before the prep but the liquid diet and that solution I think (pretty sure) contributed to my already fragile condition.

My doctor did this same procedure a year ago when I had to go to the hospital for an emergency blood transfusion. Then he prescibed Flagyl (side note - that was the first time I had a GI doctor look at me, before then my surgeon and his group of doctors were the only ones that had), and actually asked me what I normally take for this condition. I am without a doubt the only case my GI Dr. has with a J-pouch. That being said he is a very astute Dr. and seems to want to do all he can to help me overcome this illness. My surgeon on the other hand has pretty much left me on my own. Back in 2008 I went to see him and he basicly didn't know or didn't care what was wrong with me and sent me to a GI doctor - unfortunately they didnt take my insurance at the time and I was left to suffer.

My GI did take biopsies but the results wont be in till sometime next week. He still wants to treat this condition as Chrons but doesnt want to jump the gun before the biopsies come in. He said that he wants to tailor my condition with current medications that would normally would be precribed for Chrons. He has not told me which ones exactly but he did mention prednisone, pentasa, remicade and a few others I can't seem to remember - I was sedated at the time.

To be honest I have some mixed feelings about being treated with medications of this nature - especially PREDNISONE (before I had my colon taken out they were pumping my full of this steriod and my body - I felt - was fighting against it). I want nothing more than to get this illness in check and put it into remission and live my life! The past 12 years have been hard and filled with complications and setback. I feel everytime I try and take 1 step forward, I end up taking 10 steps back. And the last couple years with the anemia and blood transfusions - it's been hell. One thing about anemia is that it doesn't hit you like a ton of brick, more like a vampire in the night. And your body tries to adjust and slowly you become more and more apathetic to everything around you, constantly fatigued and tired and all you want to do is sleep. For the past 2 years I've been chronicly depressed on top of everything, without a doubt due to the anemia. But I decided at the begining of this year that I'm going to fight and overcome my illness. I just want to take the best course of action to achieve this with the least agressive kind of drugs that won't posion my body and make me more ill. That's my goal. And I'm sure that is all of our goals! And right now, I want nothing more than to achieve this!

side note; I stopped taking imodium for the procedure on Friday, havent had it since last Wednesday - noticed my ankles are no-longer swollen. Was also wondering if taking imodium for long peroid of time can the body begin to resist its effect? If it slows down the gut and there is (bad) bacteria in the gut can that exasperate an inflamed pouch? Not sure but I think I'm going to stop taking it for awhile.

Also I've decided to change the way I'm eating - from now on I'm going to try my best to eat 6 to 8 small meals a day, and not just inhale them into my body but chew them well and enjoy them for all they're worth. Also no more dairy, except for Fage 2% plain yogurt.

One last thing - does VSL #3 work for people? I've tried the tablets but say very little results if any. I've been taking Culturelle after I ran out of the VSL #3 and havent noticed any difference with it either. Was thinking of mybe getting the VSL in just poweder form but I dont know. Any thoughts on probiotics and if they really work? Are we just throwing money away?

Would greatly appreciate any more responses or words of wisdom. Thanks.

There is nothing wrong with treating it as if it was Crohn's Disease, even if the diagnosis is uncertain. I am actually taking Pentasa in addition to antibiotics and I believe it helps. Remicade has been suggested to me by both of the pouch specialists I have seen, but I view it as a last resort drug to be used when the other treatments, which are working, fail. My specialist seems to agree with me that we should not change the rotating antibiotics, but my scope is scheduled for this Friday July 23 and he wants to withhold final judgment until then.

I tried probiotics - VSL 3, Align, and Culturelle - and they did not work on me, but that does not mean they should not be tried as everyone seems to respond differently.

By the ways, I think the prep may exacerbate the condition. I am being told to take Fleet enemas and in the past they irritated my pouch tremendously, but all of these prep meds are designed to flush you out and all of that induced diarrhea does not help you feel good.

Joel, just wanted to add a side statement/question. As you said you believe you are the only J-pouch patient in your GI's office, are you sure they gave you the proper prep? That seemed extrememly harsh considering you do not have a colon! I was just in for a flex sig last week and did no prep whatsoever. The scheduler originally told me to do a prep and then I had them ask the doctor to double check. He said absolutely not necessary with a pouch. Just thought I'd mention that in case you have another scope coming up in a few months.

Thanks for starting this thread. They were checking me for Crohn's last week too (but determined it was pouchitis) so I got some answers here.

I also never do a prep, just no food after midnight and there have been times when I would go in for an appoitment and it would be-let's do a scope while you are here-no nothing. I also am never put out either.

I can also relate to what you are going thru. I have chronic pouchitis since day 1. I have been on old UC drugs and anitbiotics. This last attack was so bad that I was told remicade or pouch out. The remi worked but I had a horrible reaction to it so I do not know what is in my future. My GI was so certain I had Crohns. Made me nuts about it. She ran every test under the book and guess what-no Crohns-not one sign-finally had to admit defeat, but still does not solve my problem of chronic pouchitis not responding to treatments.

Last time I had the flex-sig they gave me an enema to take - because it was the first time I was every given a prep to clean out the pouch, I called my surgeon's office and the doctor on call told me to empty the bottle of the enema solution and fill it with warm water (didn't really flush me out but didn't really exacerbate my condition either). This time I didn't really question the prep cause I did a search on the J-Pouch group database and found that a couple others had done the same prep. Looking back I probably should've questioned it more.

6 days after stopping imodium - BMs are moving much better but very loose. Good news is I dont feel as constipated. Does anyone know if imodium can cause inflamation to get worse. I've been taking it off and on for little over a year (read on here that it worked for some people) and at first it did form the stool but made me very constipated, was having maybe 2 to 3 BMs a day. Then slowly over time it really didn't do anything for me, other than constipate, but I still took it off and on, no more than 4 a day. Could imodium have exacerbated my condition?

Thanks, for the replies. DJBHusky good luck Friday. Let us know how it goes. Also noticed you're located in CT - I'm in the Hartford area. Do you have any suggestions on Doctors or specialists I might be able to get a second opinion from? Would greatly appreciate it.

Again, thanks for the replies and please feel free to add more comments or words of wisdom.

Joel,

I definitely believe that in the past when I took too much imodium it exacerbated or caused pouchitis because the stool was too thick and I was having trouble evacuating cleanly and efficiently. For thickening purposes, natural agents like metamucil are better. I use imodium at bedtime and occasionally when I am taking a long trip and know I will not be near a bathroom. Otherwise I really don't need it too much. I don't seem to need to take much imodium for it to really thicken me up. I seem more sensitive to it than some others on this board - could be because the antibiotics I take chronically also thicken me up. If I take more than 2 in an 8 hour period it will be Constipation City for me.

I sent you a PM on your question on doctors.

This message has been edited. Last edited by: DJBHusky,

I just got off the phone with my GI - no signs of Chron's. Still, after speaking with my surgeon, wants to treat this as IBD. Wants me to take Rowasa for a 3 week period and Asacol (2pills 3x day). This was the same med I was taking with UC. they took the colon out - except for the 1%. Any thoughts on this? This really feels like pouchitis and I haven't really heard anything anywhere about treating it with these kind of meds, Rowasa -yes, Asacol - no.

JoelSmith

In the past, I was tried on both and they did not work alone. Maybe they will work in your case. But it does sound like they are trying to treat it as if it were Crohn's. Not sure why antibiotics are not being used if they work. It may be that you will end up back on antibiotics, chronically like some of us.

Good luck, hope that the rowasa and asacol work. If not, I would insist on antibiotics and/or seek a second opinion if they cannot come up with a treatment plan that works.