CT, you’ve summarized the trade-offs and risks pretty clearly. My only (very limited) contribution is that it might be worth thinking hard about whether your current level of inflammation is acceptable enough to hang onto. I know it isn’t great, since the inlet is stricturing, but one (positive) way to characterize that mostly negative situation is “treatable.” So as you tackle the decision about whether to permanently abandon the current treatment I’m suggesting fully considering the positives as well as the negatives.

I may well face a similar situation in the future, and for now I’m squeezing as much time out of the antibiotics as I can. I think I’d choose to live with asymptomatic inflammation rather than make the leap, but the decision would be harder with stricturing as you are dealing with. I hope whatever you choose to do works out well.

Humira's a common one too CT, ( I'm probs stating the obvious, sorry 😂).. I was on bio's for Fistulas, but Humira worked for me for a while after Remicade didn't ..

Ultimately, I ended up having bad reactions to both of them, but Humira definitely worked for a couple of years.. until my body got pissed at no longer being the centre of my attention and decided to bring me and my new found Quality of Life  back down with a crash🤦😂...

I think the reaction I had to Humira is pretty rare tho so don't let me worry you if you're considering it ...

Good luck anyway 😊

CTBarrister, there are several options if your GI is free to choose between Crohn's and colitis treatment. It is not important how you call it, as you already said.

Entyvio is said to have few side effects and take effect in the bowel only. Adalimumab (e.g. Humira) has a similar mechanism to Remicade / infliximab, so it would be a logical continuation. But the chances to lose efficiency due to antibiodies are higher.

I've tried several of the modern meds in the past years, also Xeljanz and Stelara, but unfortunately none of them helped me.

Have you thought about leaving some space to the next therapy and trying antibiotics (again) in the meantime? You've been off antibiotics for several years now and there might be a good effect again, also with respect to your stricture.

Scott-

As to whether the level of inflammation I have is acceptable to hang on to, the answer is yes, so long as I am not going to re-stricture and then need endoscopic balloon dilations every 6 months.  I do not have any symptoms. It is what you would call "friendly inflammation", in that it is not really affecting my quality of life.  But if the J Pouch inlet, which is now dilated to 18 mm, closes back up, and I am once again a blockage waiting to happen, that will start to effect the quality of my life.  I think my GI's goal is to control the inflammation in that area a little better than we have, although he has cautioned that I may be as good as I am going to get and I may need to get dilated from time to time.  I was pleased that the 3 EBDs I had worked out with no complications, but I am mindful that if we are doing this every year or every 2 years, the law of averages is going to catch up with me as far as a perforation.

FF and SteveG-

Thanks for your input as well.  Humira, and a return to antibiotics, are both certainly on the table.  In fact, it is possible that the deterioration at the J Pouch inlet may have started when I went off antibiotics a few years ago.  I went off antibiotics because I felt good and it seemed like I was taking too much stuff.  A biologic like Entyvio or Humira, coupled with a low level of rotating antibiotics, might be a logical change, but we will discuss it and see where it goes.

Just from my experiences in the Infusion Center I go to, it seems like Entyvio is the most commonly used biologic after Remicade.  I know my GI is enamored with it, but mainly because its mechanism of action is different than Remicade's. For that reason he thinks Entyvio to be a logical successor treatment when Remicade has not worked out.

I had a long televisit with my Doctor today, this because I was exposed to a coworker who is Covid positive and they didn't want me coming to the actual appointment. We just converted it to a televisit via the PMD App. Anyway one of the things my doctor told me is that there is emerging opinion that these post J Pouch cases of chronic inflammation developing at the J Pouch inlet, afferent loop and neoterminal ileum are no longer being viewed as Crohn's Disease. They are either a Pouchitis variant, or a new form of IBD. In any event they don't know, and we then advanced to the more important discussion of treatment.

He told me he considered taking me off Remicade and putting me on Stelara, but he thinks the downside risk is greater than the upside which is likely the Stelara working no better than the Remicade.

Therefore he has concluded as did SteveG above that we need to bring back an antibiotic into the mix, but a new one. And that new antibiotic he wants to try is Vancomyocin. Although normally used to treat c-difficile, he said he has had great results using it on his Pouch patients for their pouchitis. So I am going on Vancomyocin immediately, weaning off Entocort, and staying on Remicade. We will scope in 6 months. He said I need at least 6 to 12 months on Vancomyocin because it has both antibiotic and immunologic properties. So that seems like a long time but if I will be scoped in 6 months we will either see results or not.

He also thinks I may need to be dilated again in the future, but time will tell on that.

I’m glad there’s a plan, CT. I hope it works very well.

Hi CT Barrister. Sorry to hear of the troubles.

The new thinking about what had been called Crohn's in the pouch/pouchitis  was discussed among leading experts in the first Columbia webinar in Sept., which is on-line and link posted a few places here. Have you watched it?  Discussion was towards the end I think. They  suggested that study of this Crohn's-like disease of the pouch may help identify the causes of IBD generally. As your doctor noted, they are not calling it Crohn's, and now the surgeons are specifically including risk of recurrence of IBD like disease of the pouch  in their informed consent for UC patients (who never had any disease in the small bowel.) I think it was Dr. Hull  who said removal of the colon and creation of J pouch doesn't mean UC "cured," because us lucky ones are probably pre-disposed and as the mucosa of the pouch changes, we'll - you know.

I hope things ease up for you.

AMB, thanks. I did not see that Columbia webinar but I suspect my GI doctor did, because he did use the exact terminology you mentioned. He told me the medical field is now moving away from calling it Crohn's and instead are viewing it more as a new form of IBD whose precise origins and processes are still unknown. He did say that it is believed that the new, as yet unnamed form of IBD is a distinct disease from Crohn's and UC and somehow arises from the bacteria in the small intestine.  I kind of always believed that I had a new disease- it was hinted at by multiple extremely experienced J Pouch specialists I saw who were reluctant to call it Crohn's, and who did diagnostic tests on me including Prometheus tests that were negative for known IBD even after being viewed by pathologists on both coasts.

On another note I started the Vancomycin and it's very similar to Xifaxin in that it stays in the gut and is not systemically absorbed. I am taking 4 125 mg capsules daily. One weird thing is my directions that came with the medicine which say, "take 4 capsules daily while awake." I didn't really understand this- how exactly would I take the capsules when I am not awake?

I should tell everyone that despite the apparent poor control over my J pouch inlet inflammation, I feel pretty good.  I had my best income year in 30 years as an attorney last year so my energy, effort and ability to work is obviously there and nobody should feel sorry for me. I am a bit concerned about the future, but then again all of us are, even if it's not on this specific issue. I am optimistic about the Vancomycin. We will see how it works. We will know in July when I get scoped.

What you say about energy resonates. Can't do the brain work well if you are anemic and exhausted and fighting a steady state of inflammation that is life with IBD.   I'd also observe that positive thinking and some antibiotics sound like an excellent combination!

CT, regarding taking 4 vancomycin pills while awake: This means don't wake yourself overnight to take the pills.

I hope this gives you stellar results. That would be the ultimate!! -- Rose

This is a useful article that shows a lot of options: https://journals.sagepub.com/d...77/17562848211023376

Alsothis one (“Clinical guidelines for the management of pouchitis”), see the diagram on page 6.

btw, have you tried doxycycline antibiotic?  It works for me.

Reading through this thread and thinking I might bookmark it for talking points for my next GI appointment. My Dr thinks I have Chron’s due to inflammation above the pouch but I am loathe to go back on immunosuppressants. I have never been inflammation-free but have felt quite well overall. If my pouch seems to get too upset I feel I can usually bring it back under control with diet and rest. So it seems I have that ongoing “friendly inflammation” that was mentioned? My previous GI would note the inflammation at my scopes but not be overly eager to treat if I felt fine. This new guy is very concerned about it being Chron’s and the long-term implications of chronic inflammation. I don’t know what to think about it 😐

Also does anyone have the link to the aforementioned Columbia webinar?