Blueflame,
How is that she thinks backwash is not possible? Did your J Pouch come with a backwash valve? Or does she think that it's not what is causing the ulcerated areas inside the pouch? Which would make sense because backwash only creates problems above the pouch.
Also, how far above the J Pouch inlet are/was the ulcerated and granulated areas?
CT,
I’m not clear why she says SIBO isn’t possible and she did not say I have a valve. I need to understand that better when I see her. The affected area was right above the pouch last year and this year. Inside the pouch is new this year and she says she’s certain the small bowel series will show more inflammation further up.
What you are describing is indicative of inflammation from backwash stool. If they find no inflammation further up, just right above the J Pouch inlet, there is pretty much no other explanation for it.
What you have described sounds exactly like what I have, with one difference: the inflammation inside the J Pouch has disappeared since I started taking Remicade.
Are you the only J Pouch patient of your doctor?
CT, no she’s quite experienced from what I can tell. She’s exceptionally resolute in her diagnoses and communications which is a bit of a challenge.
It sounds like the treatment she’s suggesting is the same as you are taking. She’s very brief so I don’t yet know if she would intend to include antibiotics with the biologic. I just know she’s saying this needs more than just antibiotics.
I’m to meet with her IBD team next week to discuss options. I’ve gone from not wanting meds because this just can’t be, to being willing to start with the Imuran route. I’d like to see how that and diet goes before biologics.
Imuran is a very different drug and my body rejected it almost immediately. It made my liver chemistries go haywire. I was tried on it back in the 1990s.
BlueFlame, good luck in the meeting with your IBD team next week and hope that you are equally resolute in asking questions and advocating a course of treatment for yourself. Hopefully this discussion armed you with some questions to ask.
Yes, very helpful CT. Thank you.
I am doing great with Imuran, including liver functions, and I even have fatty liver disease. Actually, I was on a variety of biologics for my arthritis until pouchitis became chronic. My GI suggested the combo of Imuran and Remicade as the one with the most data for pouchitis treatment. Of note, Imuran used with Remicade is a lower dose than when used alone. It helps prevent antibody formation against the Remicade.
Jan 
Interesting, Jan. Thank you. So complex. I’m glad you’ve found what works for you.
The status is clear as mud. Small bowel series results are now in and say chronic pouchitis. Does not say crohns, which is the new concern. I’ve left a message asking the doctor to clarify as her notes say to follow up as planned for IBD treatment. It’s not clear if Crohns is ruled out or not.
Received a reply. Crohns isn’t evident in bowel, but is in pouch. They’ll explain more when I go in Monday. That’s a big difference from chronic pouchitis in her first message. Really frustrated.
Well, you can either make yourself crazy trying prove or disprove a diagnosis and never get a clear answer, or you can accept chronic pouchitis as a diagnosis and just take it from there. Go with what works. Treatment is essentially the same based on signs and symptoms, regardless.
I know it does not seem very scientific, but sometimes there simply is no clear cut answer. Remember, you cannot completely rule out Crohn’s, as diagnostic certainties are often not present, at least not with today’s diagnostics. This is where the skill and knowledge base of your doctor comes into play. There is such a thing as Crohn's of the pouch, without other involvement.
Personally, I’d be pleased that my disease is confined to this small area (for now). Perhaps with effective treatment, it can stay that way.
Jan
Jan, are you saying chronic pouchitis may also be treated with biologics? I understand what you’re saying, but wouldn’t it make sense to take this in steps? I have had no treatment in years. Not even antibiotics. Why not start there, then go to imuran, then biologics if needed?
I’m not looking to take risks or be in denial. But I feel well, especially after getting back on my diet. Why not start with antibiotics, recheck and see how things are looking?
I agree in the take one step at a time approach. However, you need to be aggressive in treating chronic inflammation, and not dawdle if you are stagnating or regressing with any one treatment. If the antibiotics are not achieving success (and the proof will come in your scopes), you should go to the next step sooner rather than later.
I also agree with Jan on not getting caught up in diagnostic slowdowns. The diagnosis, as between pouchitis and Crohn's, does not matter for reasons that have already been stated. It's chronic inflammation, whatever you have is whatever you have, and it needs to be treated regardless of what it is called.
Blueflame, as I already mentioned, Remicade is a treatment for chronic pouchitis whether it's diagnosed as Chrohn's or not. It is a proven treatment of pouch inflammation. It eviscerated my pouch inflammation but not my neoterminal ileum inflammation. You gotta forget the words "pouchitis" and "Chrohn's" and instead use the words "chronic inflammation." What you call it beyond that simply does not matter.
I also do not understand when you say Crohn's in the pouch is a "big difference" from chronic pouchitis. It isn't. Both are treated the same. Both are species of chronic inflammation and cannot be allowed to go untreated. If you think chronic pouchitis left untreated cannot lead to something bad happening, you would be badly mistaken. The Cleveland Clinic study on rectal cuff cancer patients showed that many had severe pouchitis, some cases of which had not been properly treated.
I agree, it makes sense to opt for antibiotic treatment as a first option. But, if you are not symptomatic while having chronic inflammation, it is a little more tricky. Also, if your doctor is quite convinced this is more likely to be Crohn’s of the pouch, and not the ordinary run-of-the-mill pouchitis, a more aggressive approach may be considered. Hopefully, when you are at your next appointment, you will get the full details about your doctor’s plans. Make sure to ask all the questions you asked us. Protocols are changing all the time.
And yes, I am on biologics for chronic pouchitis. But, I did try antibiotics first. I became antibiotic dependant and was rotating three different antibiotics. Bottom line, my GI felt that the long term risks of chronic antibiotic use were worse than the risks of biologics. Plus, understand, I had already been on biologics for years for enteropathic arthritis. The main change was to Remicade and adding Imuran.
Jan
My doc explained and I am of the belief that there are different "causes" of "pouchitis" or inflammation of the pouch, and there are no easy diagnostic test to determine what the "cause" is. This is why docs will often cycle through the treatments in the pouchitis article I posted earlier in this thread first (and then biologics, which came along after the article was written), to see if you can get a good response. If chronic rotating antibiotics stop symptoms and clear up inflammation on scope, great-and probably not "IBD of the pouch or Crohns of the pouch" If it takes immuran and/or biologics to successfully treat, it is probably some ityoe of IBD-related root cause.
I was adamant when I started hearing "it may be crohns" because I was mainly worried that it might mean I was now susaceptibke to disease throughout my digestive system, and in 30 years there had never been signs of that. Any inflamation i have now is restricted to the pouch.i like to think of it as "IBD of the pouch". If someone asks, I say I have an inflammatory bowel disease. I don't say UC, and I don't say Crohns, and frankly, if you don't have a pouch "pouchitis" just prompts more questions. But ultimately what I call it doesn't matter because I have found a treatment that works (immuran plus rotating antibiotics) and if/when that stops working, I will start on one of the biologics.
If it is not clear cut crohns diagnosis, I see no reason why you couldn't start with rotating antibiotic treatment (maybe with budesonide-a designer, non-systemic steroid to jump start healing of inflammation), then if it doesn't work try something else or or if you start to feel uncomfortable with long term antibiotics and more comfortable with another treatment, go that route. BIOLOGICS as a first line treatment is not an unreasonable choice if it is what YOU want, but if you'd rather wait on that treatment and try other things first, there is no reason not to.
Thank you everyone, as always.
Met with the IBD team today and definitely taking steps back to sort this out more. More tests, etc.
One interesting thing is the doctor has been telling me there’s more inflammation this year compared to last. Today the IBD tesm told me less was seen this year and the inflammation leading into the pouch last year was not present this year.
Update and wondering thoughts before my next appointment:
Blood work shows folate and B12 in low normal range. CRP elevated. Prometheus result: pattern not consistent with IBD. Small bowel series indicates chronic pouchitis, less inflammation than last year and no inflammation just above the pouch this year (had some last year). Endoscopy showed a crohns like cobblestone patch with ulcer. Biopsy showed no granuloma or abnormal cells.
Original diagnosis of UC 32 years ago. J pouch for 27 years. Treated a few times for pouchitis.
With this possible crohns scare two months ago, I went hard core on bowel rest, followed by all organic and Whole Foods, alternative supplements, lots of water, no caffeine/alcohol/sugar/carbs and switched to some alternative foods to get rid of possible triggers. I’ve just added in B12 and folate by supplement and veggies; I had completely excluded this from my diet so I’m not inclined to think it’s an absorption issue.
I feel so much better physically. The symptoms I could “feel” before dietary changes felt like pouchitis. I don’t feel symptoms now. The fatigue is lifting and I think will continue to improve when I get back to exercise and the B12 and folate build up.
Sooooo, I’m wondering thoughts before this appointment as I think about questions to ask.
My thought is to continue my current course and ask to repeat tests in 6 months or so.
I’m also aware of the issues with the promethius test and find the results curious.....though I’m grateful for the overall picture.
My Prometheus test produced the exact same result. My GI didn’t believe it and told me he didn’t think the test was reliable at all. What would be more reliable is an MRI Enterography. As I mentioned my diagnosis is likely Crohn’s notwithstanding the above. But the correct diagnosis is actually irrelevant because it all boils down to whether you have a condition that needs to be treated. If so then the only important question is your response to the treatment.
I am with CT on this. You have plenty of info to point toward chronic pouchitis. The chronic inflammation likely led to the deficiencies. Prometheus results are a red herring and essentially meaningless. Diet may well keep you on track, but don’t rule out treatment in the future, or beat yourself up if diet does not work long term.
My B12 was also low and I responded very well to supllements. I only take it twice a week now and my numbers are quite high. My folate was always within range, though. My B1 and Vitamin D were also low. I always have eaten wide variety of foods.
Jan
Jan Dollar posted:I am doing great with Imuran, including liver functions, and I even have fatty liver disease. Actually, I was on a variety of biologics for my arthritis until pouchitis became chronic. My GI suggested the combo of Imuran and Remicade as the one with the most data for pouchitis treatment. Of note, Imuran used with Remicade is a lower dose than when used alone. It helps prevent antibody formation against the Remicade.
Jan
Hi Jan, I have been on Remicade with Imuran for 14 months and my Gİ says it's time to stop Imuran now. Just as you, I started Imuran along with Remicade to prevent antibody formation. My Imuran dose is 2 x 2 a day (50 mg each). I am a bit concerned about going off of Imuran because I have been doing great lately. Humira never worked for me. And I don't want my Remicade treatment fail.
I suggested tapering off Imuran gradually but my GI thinks otherwise. He wants to end the treatment all at once at the end of this month and go on with Remicade only.
BTW, my blood work has always been good throughout the treatment, no side effects from Imuran or Remicade. And I also have hepatomegalia and fatty liver ( grade I-II).
I wonder why he is so determined to end the Imuran treatment, and why not to stop it gradually. any ideas? Thanks.
Thank you CT and Jan. I like the idea of an MR Enterography. Wonder why it’s not been considered, but I’ll surely ask.
CT, you mentioned you eat yogurt. What type? Do you take VSL and how much?
I’ve switched to all goats milk for dairy, and goats milk kefir. VSL made me miserable and I felt I was wasting money between that and the lack of definitive guidance on how much to take. I now understand it takes time to adjust to the probiotic and went thru that misery with another brand I’m happy with. But the scope will be more telling so I’m not ruling out VSL.
I felt like VSL III was a waste of money as well. I was tried on it a few times, cold turkey off antibiotics, and it was a dramatic fail.
I eat all kinds of yogurts, but I like the Yoplait lowfat probiotics yogurts, Noosa, and Chobani. I eat a yogurt for breakfast and another one as an afternoon snack but with the snack yogurts I stick to 100 calorie or less with low sugar and fat.
As far as the MRI Enterography, it's much better for diagnostic purposes than the Prometheus test because it also isolates the location of the inflammation especially up the pipeline so to speak. It's an almost 3 hour test and I posted a thread about mine here:
https://www.j-pouch.org/topic/m...study-of-small-bowel
I posted that thread over 5 years ago and I am glad I did because I don't remember the details so well and that thread served as a journal of my experiences with the MRE. Right when that test was done I was at my worst point in the 25 years of managing the pouch issues and things have been much better since then with vastly improved diet and Remicade starting in 2015.
CT, thanks for the MRE thread. Very informative. I suppose if there’s no apparent thickening, it could also indicate lack of disease progression at this time. Such a crap shoot.....pun intended.
Linguist, it appears that the jury is still out regarding whether combination therapy with a biologic and immunosuppressant should continue long term. There is a concern regarding lymphoma with long term therapy with azathiopurine. But, the key is if you are in full remission before considering stopping one or another treatment. The immunosuppressant makes it possible to sustain lower doses of Remicade over time, by suppressing anti-Remicade antibodies.
I was able to find this article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5479343/
Your azathioprine dose is higher than mine. I only take 50mg daily, and have since the beginning of my treatment. Perhaps because I am also on treatment for my arthritis in addition to IBD, there has been no discussion of stopping any treatment. It has been 18 months for my combination therapy.
Jan
Two months into this journey and they don’t know what to make of my mixed results. Really annoyed at the communication confusion. Now I’m told the cobblestoning appeared in the small bowel series last year, but not this year. If all the flip flops are straight, this year it’s inflammation and ulcer in pouch only. But, once again I see the doctor in two weeks.
For now it’ll be treated as chronic pouchitis, but also scheduling an MR Enterography.
And at two months of testing I’m just now being prescribed antibiotics. All I know for now is Cipro and flagyl, likely at least a month. I’ve never taken them more than two weeks, and never together. Really hoping I’m not knocked on my butt with nausea. Last time I told the doctor I had this symptom she said that doesn’t happen. I’ve since learned otherwise. Next time I mentioned it to another doc in the practice and he said he could prescribe something if I had nausea, but I didn’t need it.
The care plan is coming along but really annoyed about communication, having a doctor who multiple times is making me feel things are in my head, disregards things I say and treatment possibilities. Just been down that road a few too many times in 3 decades and not tolerant of that crap.
Grateful, but tired and annoyed.
Blueflame, I hope the Cipro and Flagyl do the trick for you. I looked up Cipro and Flagyl, and nausea is prominently listed as a possible adverse reaction for both. It’s not in your head. Perhaps taking them with a meal (non-dairy) might help.
Yes, thanks Scott. Even the Rx literature says the same. Such a basic thing.
Doctors don’t like the internet for educating ourselves and this doctor said talk to the experts in her office rather than what I read on the internet .....as though I wasn’t going to talk to them. It’s about advocating for ourselves and I’m frankly annoyed today that much hasn’t changed in decades.
I was told they haven’t seen Promethius results that indicate pattern inconsistent with IBD when there’s a clear history. Then there’s the lab that didn’t even run the test until I called directly myself and learned they had a system glitch.
Finally, I was initially told yesterday by the PA that an MR Enterography was not warranted since the small bowel series was clear. Today I get a call that the doctor wants it done. I’m quite certain it never would’ve come up had I not learned about the test on this board.
Heck, I had multiple doctors send me away with no answers for 13 years until I discovered the word pouvhitis on this board.
This seems basic stuff that specialists should be on top of without the patient internet education they are quick to shut down.
/rant
Well they didn’t see my Prometheus test which said pattern inconsistent with IBD despite that I have had IBD for 45 years documented on scopes. Like I said it’s a nonsense test and inconclusive. My GI has two pathologists on west and east coast, both of very high expert pedigree, look at the results and they couldn’t draw any conclusions.
The MRE isn’t necessarily going to give you closure on a diagnosis and as I mentioned I don’t think “proper” or correct diagnosis is or should be driving your treatment. The MRE will provide information on the location and extent of the inflammation upstream. These tests should be viewed as guides for treatment and markers for your response to treatment. Any Doctor who wants to see a Prometheus result before determining a course of treatment for his or her patient is not someone I would be a patient of for very long.
I have taken antibiotics for 22 years continuously and always take with food and was never nauseated by any.
Regardless of everything else I think you should go to a different GI specialist going forward. Find someone experienced with treating Pouch inflammation and related issues.
Good luck. If you improve with antibiotics you can stay on them but will need to rotate as previously discussed.
The story continues, as these things go. I continue to feel better. MRE on Monday.
Just a tidbit to share that I received from Prometheus:
The sensitivity of our IBD panel is 72% which is posted at the bottom of the report. This indicates that we are unable to detect IBD in ~28% of IBD positive patients. The UC marker ANCA antibody is produced in the large bowel, so with resection, this reduces our ability to detect IBD / UC.
The positive outcome of a negative IBD result, is that the initial diagnosis is more likely.
Sounds like it was a big waste of time and money...
Jan
I don’t know but, while it’s quite easy to be negative, I choose to stay positive.
The Prometheus results should be ignored, totally. IMHO this test is just a money grab by pathologists much like propofol was a few years back by anesthesiologists. Then when everyone started doing it became a craze until patients objected because it is 15 times the cost of conscious sedation which they do not tell you upfront when giving you a choice. As far as Prometheus they give something to the Docs like kickbacks for pushing these tests even though responsible and ethical doctors know they don’t really mean anything. Someone is making money it but it’s not you!
I had an intelligent and honest debate with my GI about the merits of using propofol to sedate scope patients. In the end he gave in to me because logic compelled him to do so. They mainly do it for reasons of making money for anesthesiologists and moving patients in and out of recovery rooms as quickly possible. Not because it’s actually better. MONEY GRAB for the specialist and the facility as they can scope more people and make more money. All of us should be calling a spade a spade. They will NEVER put propofol in my body.
BF, hit the ignore button on Prometheus results and move on to the MRE which will actually provide some reasonably conclusive scientific evidence. Good luck and review my thread on same. It’s not a horrible test, just long.
