My question, followed by my history.....

Is some pouch inflammation and/or ulceration to be expected?

Today was my annual pouch endoscopy. I was told it looks the same, some inflammation and ulceration. Follow up pending biopsy results; endoscopy in one year; continue what I am doing currently.

I've been on Xifaxan 200mg/2x day as this is the dose approved by insurance; I was never on the maximum dose due to insurance restrictions. I'm also on  Florastor. BM's are 3-5/day. No cramping, bleeding, no night time BM's. Frequency and bloating are well managed along with strict diet.

Right now it's being called pouchitis. As we've been monitoring this the last few years with all possible tests, the idea has been thrown around of indeterminate IBD (possible change from UC to Crohns).

Biologics were first recommended when the pouch appeared to show cobblestoning, but that resolved with much needed diet change before any meds were started. I was told cobblestoning doesn't just disappear like that it if it was indeed Crohns. No sign of inflammation further up the tract. Cipro and flagyl were then used for months with some improvement, but not as much as the GI would have liked and I struggled with Cipro side effects as a long term treatment.

I've been asking to take this one small step at a time, trying all options before biologics. The GI has been willing to work with me on it. A comment from the team before we started Xifaxan and when the GI was leaning toward biologics was, are we looking for a perfect pouch? I understand why the GI would want to treat the pouch aggressively, but I also sensed that some irregularity is to be expected. The fact is, if there are med side effects, I get them in spades and it greatly affects functioning, so it's like choosing which bullet to take. If any med changes are proposed, I definitely will want to discuss continuing to experiment with other options before biologics.

So, my question....is some pouch inflammation and/or ulceration to be expected? 

 

Original Post

To answer your question, not necessarily, but once inflammation is seen and is determined to be chronic, it needs to be watched and should be treated aggressively. Treatment with antibiotics, and biological drugs, doesn’t necessarily eliminate chronic inflammation but can ameliorate it to the point where it is “simmering” and not interfering with quality of life. Not treating it all, however, can lead to deteriorating pouchitis and a bad situation and also could severely impact on your quality of life.

I have had chronic inflammation for almost the entire 27 years I have had a J Pouch and we have in fact succeeded in keeping it in a “simmering” state, first with rotating antibiotics, and in the last 4 years with Remicade and low dosages of antibiotics and methotrexate.

What label you choose to slap on the inflammation - Crohn’s or pouchitis or indeterminate IBD - is irrelevant. Regardless of what you call it, it has to be treated and respond well to treatment. If anyone here would rather be a pouchitis patient who doesn’t respond to treatment than a Crohn’s patient who does, then we probably need to add a psychiatrist to the battery of medical providers. 

I understand the concern with meds and side effects. I have largely been lucky on that front. I tolerate everything we have thrown at my chronic inflammation pretty well. The alternative is to not take meds and try to eat a copacetic diet. You can try that approach but if you notice a worsening of the Pouch function you should abandon immediately. You should also be scoped annually once chronic inflammation is observed (as oppose to a one off bout with pouchitis).

The perfect pouch comment makes sense to me (and my doctor did with me as well) because everyone has a baseline where things are “as good as they are going to get.” I am at mine. You may not be at yours. My Pouch isn’t perfect. Life isn’t perfect. But mine is very good. I am very thankful we have been able to treat it, and that I have had my J Pouch 27 years.

Good luck-

Thank you, CT. Yes, I understand. I've been at this rodeo for decades and working at treatment of whatever it is that's going on for a few years now. I believe I had untreated pouchitis for decades until I found this board and then my GI who validated it. I guess, more specifically, is the presence of ANY ulceration cause for alarm and indication that antibiotics aren't cutting it?

The answer to the question in your last post is not a simple yes or no. There is a certain level of inflammation that is objectively concerning. In 2012, after a 2 year stretch of poor eating and my weight ballooning to over 200 pounds, my then GI told me he didn’t like what he saw on scope and recommended biological drugs. I decided to clean up my diet and lose weight and the next couple of scopes looked good. He shared the pics with me and you could see it clear as day. In the 2012 scope, My J Pouch and the inlet looked like a horror show and was seriously strictured.

In 2015 I regressed, my new GI again recommended biological drugs and I agreed.

My J Pouch is now mostly inflammation free except for the cuff and the Pouch inlet- historically my 2 worst areas. There is also some inflammation in the neoterminal ileum, mostly from backwash stool.

Do you ask your Doctor for the scope pics? I have seen them for the last 10 years. They don’t lie. You can see inflammation and how severe or scarce it is. My last scope showed scattered ulcerations but nothing of real concern as compared to the past scopes. The only issue was a large inflammatory polyp (benign) which will likely be removed next scope.

Scopes show a pattern and progression from year to year. I would strongly suggest you review your scope pics and reports with your Doctors. If you have just discovered it on the last scope, treat and wait to the next one and re-assess. I can tell you that you will see a story on the scopes pics and reports. It’s clear when you look at them whether you are going in the wrong direction, getting better or staying at baseline. I am at my base line now for 3 years.

Blue Flame, I am posting this link for you and everyone else’s benefit. Go to the below link and to my post which is 4th in the thread. I posted pics of my J Pouch as it looked in 2012. You will see what a horror show it looked like. It’s a lot better now!!!!!!!

https://www.j-pouch.org/topic/...does-scope-look-like

You see some large ulcerated areas in my J Pouch. That inflammation is gone now. There is a mild inflammation of my rectal cuff and the inlet. It’s manageable inflammation.

If you get your pics and they look like the pic I posted above with large, punched out ulcerations, that would be a concern. And if you see it in 2 straight scopes and it’s not looking better, the writing is on the wall to change treatment or take it up a notch. If you can get your scope pics emailed and can post them like I did mine, I will take a look and tell you what I think. I have seen tons of scope pics and know what acceptable level of inflammation looks like. But in the end it’s also quality of your life and response to treatment that matters most.

Pretty much none. My quality of life is very good. Very occasionally at the end of a cycle before my next Remicade infusion I will get a tad more frequent with the BMs, but nothing major. I am a trial attorney and I am in Court all the time. I have functioned as such for 27 years. I got my J Pouch the same year I started practicing law. My symptoms are I feel under much better control now than in the 1990s. Remicade didn’t exist in the 1990s. In fact, none of the biological drugs existed except Imuran, which is harsher on liver function than all the others. For that reason I flopped on Imuran. In the 1990s you basically either responded to antibiotics or else you lost your Pouch eventually. I managed to survive with it. But it’s much better now.

Like I said though I am very lucky and seem to tolerate antibiotics and Remicade and other meds better than some other people. 

Although some residual inflammation may persist, I’d try like heck to find a treatment that got rid of ulcerations. 200 mg of Xifaxan isn’t likely to be adequate for this indication. You might get better results with 400 (or 550) mg two or three times daily. One strategy would be to try it (out of your own shrinking wallet) and then if it works have a basis to appeal the insurance company decision.

Good luck!

Scott F posted:

Although some residual inflammation may persist, I’d try like heck to find a treatment that got rid of ulcerations. 200 mg of Xifaxan isn’t likely to be adequate for this indication. You might get better results with 400 (or 550) mg two or three times daily. One strategy would be to try it (out of your own shrinking wallet) and then if it works have a basis to appeal the insurance company decision.

Good luck!

Scott, agreed. I was thinking the same. Getting Xifaxan at all required an appeal after a trial with cipro and flagyl.

Scott F posted:

Although some residual inflammation may persist, I’d try like heck to find a treatment that got rid of ulcerations. 200 mg of Xifaxan isn’t likely to be adequate for this indication. You might get better results with 400 (or 550) mg two or three times daily. One strategy would be to try it (out of your own shrinking wallet) and then if it works have a basis to appeal the insurance company decision.

Good luck!

Scott, if I recall you were on rifaximin and it stopped working? What do you take now and did you ever develop ulcerations?

Blueflame,

I have about 4-6 BMs a day, sometimes more depending on what and how much I eat. 

I have used Xifaxan 550 mg x2 in the past. My insurance now only covers a limited annual quantity. In the past it was always the highest tier copay - $40 usually on a 30 days supply. Xifaxan was always effective for me at that dosage.

One comment on Scott’s post- I have “tried like heck” (or more) and some residual inflammation does persist. And has for 25 years. But it hasn’t killed me or deterred my quality of life.

CTBarrister posted:

Blueflame,

I have about 4-6 BMs a day, sometimes more depending on what and how much I eat. 

I have used Xifaxan 550 mg x2 in the past. My insurance now only covers a limited annual quantity. In the past it was always the highest tier copay - $40 usually on a 30 days supply. Xifaxan was always effective for me at that dosage.

One comment on Scott’s post- I have “tried like heck” (or more) and some residual inflammation does persist. And has for 25 years. But it hasn’t killed me or deterred my quality of life.

So, are you saying Xifaxan worked for you/didn't stop working....but insurance wouldn't cover the amount you needed....and instead covers Remicade?

The more I think about this, I'm really upset. A year has gone by and I have not been on the dose the GI wanted because of insurance.

BlueFlame posted:

So, are you saying Xifaxan worked for you/didn't stop working....but insurance wouldn't cover the amount you needed....and instead covers Remicade?

Yes, that is essentially correct but I will explain.  I have a group health plan with Anthem Blue Cross/Blue Shield that has a $5000 deductible and a $6500 out of pocket maximum.  Through my employer.  I chose that plan for 2 reason: (1) no payroll deduction if I chose the high deductible plan; and (2) Because Remicade has a cost savings program called Remistart, all of the $10,000 for each infusion gets paid by my insurance except for $420 towards the first infusion which was applied against my deductible.  Remistart is a Credit Card that Remicade sends you that pays for the medication.  Those payments count towards your deductible and out of pocket payments, even though you are not actually paying them.  Being on Remicade is frankly saving me money!

With regard to Xifaxin, the problem is that it is typically prescribed in a short course as a remedy for travelers diarrhea. It is not typically prescribed chronically.  So they will cover about 3 weeks a year and then pull the plug, because it is not seen as a viable treatment for anything other than travelers diarrhea.  It's also a designer antibiotic that is not systemically absorbed, meaning that any side effects will be non-systemic and theoretically only in your gut. Remicade, on the other hand, is widely viewed as a drug that works for chronic IBD.

Rifaximin never worked for me at all, even with adequate doses. That’s mostly why I suggested that you might want to try it on your own nickel. If it doesn’t work you can save yourself the headache of arguing with the insurance company, and if it does work you can have a more persuasive argument. It’s expensive as hell, though. My initial ulcerations were well controlled by Cipro. After some years on Cipro, symptoms began to return, though I don’t know if ulcers redeveloped at that time. Adding Flagyl got the symptoms back under control, and that’s where things stand for me. I’ve left out the list of various other things that didn’t work, though they are numerous. 

Rifaximin has several on-label indications now beyond traveler’s diarrhea, including IBS. The only one that is designated for long-term use, though, is hepatic encephalopathy.

CT and Scott, do you/have you had low B12/required injections? If so, did this resolve with your current course of treatment?

Small update....the path report supports the endoscopy exam. Pouch cryptic distortion and ulcer. This is unchanged from a year ago. It does seem there's a trend in improvement in biopsies; no inflammation in the transition zone. Last year I was also told there is less inflammation in the pouch, though there is still inflammation and ulceration after antibiotic courses.

Is cryptic distortion just another word for inflammation? Prior path results use one term or the other so I am unclear if there is a difference.

I also see, after an indication last year that this may be Crohns, then indeterminate IBD (possible change from UC to Crohns), all things are back to calling it pouchitis. I know CT's argument and get it loud and clear, but I'm quite ok if it is not Crohns given how it can manifest.

I have an appointment in a few weeks to decide what's next. 

I have not had low B12 or shots. I do take Folic Acid daily but that’s prescribed to counteract the side effects of methotrexate.

“Cryptic distortion” to me sounds like a fancy pseudonym for “undetermined inflammation”, but I really don’t know what it means. Regardless of what the inflammation is, your goal here is to find a treatment that keeps it in check, ameliorates it or eliminates it. Nothing else really matters. Don’t lose sight of that goal. Your task here is not to solve medical riddles, it’s to get better and stay better.

CTBarrister posted:

I have not had low B12 or shots. I do take Folic Acid daily but that’s prescribed to counteract the side effects of methotrexate.

“Cryptic distortion” to me sounds like a fancy pseudonym for “undetermined inflammation”, but I really don’t know what it means. Regardless of what the inflammation is, your goal here is to find a treatment that keeps it in check, ameliorates it or eliminates it. Nothing else really matters. Don’t lose sight of that goal. Your task here is not to solve medical riddles, it’s to get better and stay better.

Yes, your position is clear. Losing sight? Nope. But to some of us it does matter. And going into the weekend....and waiting weeks for the appointment....I'll take it. It's far better than what my GI speculated a year ago before subsequent tests of my full GI tract.....Expected to find evidence of Crohn's further up based on a pouch Crohn's like patch that appeared in the pouch.....and then disappeared with diet change/before any treatments. It was then said cobblestoning doesn't just disappear like that. So yes, I will take the small victories and be happy with it. It does not mean I am putting my head in the sand and losing sight of the goal.

Sometimes it really is OK to be happy with things not being worse, while going after what needs to be fixed. It's gratitude and hope.

“Cryptic distortion” is disruption of microscopic structures in the gut wall called crypts. It’s less significant than cryptic atrophy. It’s not definitive evidence of Crohn’s, and I don’t know whether it might show up in pouchitis. Was the cryptic distortion in the pouch itself?

I’ve never had nor needed a B12 shot. I do get my B12 tested occasionally, since we are at increased risk of B12 deficiency. 

Scott F posted:

“Cryptic distortion” is disruption of microscopic structures in the gut wall called crypts. It’s less significant than cryptic atrophy. It’s not definitive evidence of Crohn’s, and I don’t know whether it might show up in pouchitis. Was the cryptic distortion in the pouch itself?

I’ve never had nor needed a B12 shot. I do get my B12 tested occasionally, since we are at increased risk of B12 deficiency. 

Yes, cryptic distortion and ulcer in the pouch. Last year indicated the same; ulceration was new last year. However, multiple scopes last year and prior years indicated acute and/or chronic inflammation, cryptitis and surface erosion in pouch, afferent limb, efferent limb and transition zone; the current pathology does not state any of this.

I understand the sticking point is presence of ulceration. I do not know at this point how the ulceration compares to last year.

 

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