Pouchitis with Pre Pouch Ileitis

Derrick,

It's very common and we basically on this board have a thread like yours posted on an almost weekly basis. It's likely backsplash stool that is causing this pre pouch ileitis issue for you, me and many others. It's a mechanical issue with the J Pouch- no backsplash valve like the colon so stool backsplashes into the neoterminal ileum. It's physics and gravity at work. I have been treating pre pouch ileitis for 15 years, I would suggest you visit this thread for the timeline I posted on my treatment.

https://www.j-pouch.org/topic/...ouchitis-and-chron-s

The only concerning difference is that in your case the pre pouchitis ileitis appeared 2 years after you got your pouch, whereas in mine it was 15. Most of the frequent and I do mean frequent threads posted on this issue are with older pouches (15 years plus), but I wouldn't be discouraged that you have the issue so soon. I have been dealing with it for 15 years plus with some of the same treatments you are having. Mostly successfully but I did have to have the J Pouch inlet dilated end of 2021. The diagnosis really doesn't matter and do not spend money chasing one. Keep treating as you have been. I would consider taking rotating antibiotics chronically to supplement the Entyvio. Go with what works. Also watch the sugar and carb intake.

Thank you for your reply.  I have seen your reply’s on other threads.  

I went for a checkup the year before and had slight inflammation at the cuff, that was it. I got sick (Covid) in that February and I started to notice a change in bowels but I was still going in the “normal pouch range” that everyone says so I didn’t think anything of it. I noticed more yellow but my doctor said that can happen normally with a pouch.  I think my pouchitis went unchecked/treated from about 6-8 months.  

To your point about backwash, I was thinking the same thing because of no history of that being an issue/year prior showed nothing and wasn’t until the pouchitis came about that this happened.  Also, the length that my pouchitis ran unchecked made me think backwash was highly probable without there being a valve.

not sure if the longer the pouchitis goes on for, the hard it is/more time it takes for medication to get rid of it entirely?

Derrick,

Unfortunately not treating the pouchitis for 6-8 months likely led to your current situation. I don't fault you for this. The natural tendency of those who have gotten J Pouches is to feel better and feel that they no longer have to take any meds at all. Pouchitis is a trap because it can sneak up on you and if not treated aggressively, get very bad very fast. You have to adopt the mindset of aggressive treatment and getting scoped annually to check whether the inflammation is being held in check and regressing. A few years ago I was doing well on Remicade, relaxed and went off antibiotics for 2 years. This was a mistake. I ended up getting a stricture at the Pouch inlet. The Pouch inlet and neoterminal ileum is where I have my most treatment resistant inflammation. Remicade cleared up my pouch. But the key thing is do not let that inlet get strictured due to inflammation. Strictures can be treated with dilation but it's a risky procedure and you would prefer to avoid it. Trust me on this. This is why I aggressively caution people not to spin their wheels with diagnostic testing or worry about whether it's Crohn's or Pouchitis. Just worry about treating it and staying on top of it. You are on the right track. Just keep hitting it with Entyvio, and don't be bashful about throwing antibiotics and/or budesonide at it if you are feeling runny. Good luck.

Thank you. I appreciate your insight on this!

It can sometimes be a challenge to get things under control when you have more than one thing going on. Have you ever tried rectal mesalamine (e.g. Canasa suppositories) to get the cuffitis under control? Mesalamine probably won’t help with the pouchitis, but you’ll feel best if you find ways to manage all of the inflammation down there. The budesonide would normally help with cuffitis, but everyone is different. Mesalamine can take a while to work.

I have not. My doctor only put me on entyvio at first and it took me 4 months of pushing to even get cipro. In his mind entyvio should solve all the issues but it takes forever to work. I really do want a combination approach.

@CTBarrister posted:

Derrick,

Unfortunately not treating the pouchitis for 6-8 months likely led to your current situation. I don't fault you for this. The natural tendency of those who have gotten J Pouches is to feel better and feel that they no longer have to take any meds at all. Pouchitis is a trap because it can sneak up on you and if not treated aggressively, get very bad very fast. You have to adopt the mindset of aggressive treatment and getting scoped annually to check whether the inflammation is being held in check and regressing. A few years ago I was doing well on Remicade, relaxed and went off antibiotics for 2 years. This was a mistake. I ended up getting a stricture at the Pouch inlet. The Pouch inlet and neoterminal ileum is where I have my most treatment resistant inflammation. Remicade cleared up my pouch. But the key thing is do not let that inlet get strictured due to inflammation. Strictures can be treated with dilation but it's a risky procedure and you would prefer to avoid it. Trust me on this. This is why I aggressively caution people not to spin their wheels with diagnostic testing or worry about whether it's Crohn's or Pouchitis. Just worry about treating it and staying on top of it. You are on the right track. Just keep hitting it with Entyvio, and don't be bashful about throwing antibiotics and/or budesonide at it if you are feeling runny. Good luck.

I know you said watch carb and sugar intake, what do you eat? I am already a skinny guy so I don’t want to cut out too much. It seems either way I go isn’t good. One I lose weight which I can’t afford and the other I prolong inflammation.

@Derrick posted:

I know you said watch carb and sugar intake, what do you eat? I am already a skinny guy so I don’t want to cut out too much.

Derrick,

I am the opposite body type of you. I am a stocky build - 5'5" and 200 pounds, and keeping my weight down has been a lifelong struggle. I kind of have a body type like George Costanzo of Seinfeld or Lou Costello of Abbott and Costelllo (I am often compared to Costanzo by coworkers). Generally, I avoid pasta and breads and try to eat so called whole natural foods- meats, seafood and vegetables. My diet is heavy on protein, low on carbs and sugars. Just as an example my typical breakfast is a Jimmy Dean Eggwich (250 calories) plus fruit (I buy the Trader Joe's frozen pineapples, strawberries, bananas and mangoes mix and thaw out as needed), or a Chobani low sugar yogurt with fruit. For lunch, I have a salad with chicken or chopped meat. For dinner, a meat and a vegetable. Tonight I am going to have steak tips on the grill, grilled corn on the cob and a half of a baked potato. I drink lots of herbal teas, everything from peppermint to roasted dandelion root to passion fruit to cinnamon.

In your case, I think large portions of proteins will prevent any weight loss. While you get to eat an 8 to 10 ounce steak, I have to limit myself to 5 ounces. I have to exercise portion control because of my weight issues. You get to have twin lobster tails- I only get one. Etc etc. I also recommend talking to a registered dietician about developing a diet or diet strategy along these lines and suitable for your age and body type and weight.

@Derrick posted:

I have not. My doctor only put me on entyvio at first and it took me 4 months of pushing to even get cipro. In his mind entyvio should solve all the issues but it takes forever to work. I really do want a combination approach.

All of the biologics take time to work, but I agree with you that your several different issues plus having deteriorated due to the pouchitis not being treated for a prolonged period, this all requires an aggressive combination approach. Mesalamine as suggested by Scott for the cuffitis, and a combo of Entyvio and one or both of budesonide and antibiotics for the pouchitis and pre pouch ileitis. At least for a few months. Your next scope, whenever that is, will determine your next treatment steps. Regular scoping is essential with chronic inflammation, otherwise the efficacy of your treatment in terms of clear results isn't known. After I went on Remicade it was at least 6 months before I had significant progress and in around 8 months scope showed huge areas of inflammation in the Pouch were gone. You have to be persistent, and patient.

I think your doctor's one size fits all approach to Entyvio may or may not work, and you need to have a heart to heart with him on stepping up the short term aggression of the treatment regimen.

I appreciate the insight on both items, your advice, and sharing your experiences!

Derrick, my situation was similar to yours, except that chronic pouchitis and ileitis started right from the beginning after takedown in 2004. I wonder why you were put on Entyvio first, usually pouchitis is treated with antibiotics as a first step.

I was given antibiotics (usually Cipro & Flagyl as a combination) only occasionally for many years, when my health was so bad that I had to go to hospital. Those antibiotics always helped me significantly within 2 days. But I was never recommended to take them long term or even on myself when things turn bad.

For the rest of the time inflammation was mainly untreated for about 15 years, besides alternative treatments, probiotics, a lecithin study and a microbiome transfer study. All of that without success.

9 years ago I started several treatments including Entyvio (about 6 months), Remicade (= Infliximab), Adalimumab, Stelara, Xeljanz, azathioprine. None of them really helped.

4 years ago I started taking antibiotics regularly, at first only once a month for about 5 days, then chronically a year later. I got a c. diff infection after 4 weeks of Cipro & Flagyl, obviously a resistant stem. It was treated with another antibiotic called vancomycine.

Some time later I started again with Cipro & Flagyl, now lowering the normal dose after about 5 days when digestive issues had settled. I think it is important to find a sufficiently low dose of antibiotics to keep a good gut health on the one side and relieve your body (esp. the liver) of stress from the meds on the other.

In your situation you need to find a medicine that helps you, either antibiotics or a biologic or Entyvio or likewise. Entyvio should not take much more than half a year to show effect, otherwise you may try another med. In the meantime adding antibiotics to keep inflammation low is advisible. Rotating antibiotics (as CTBarrister suggested) or staying off them for some weeks can help to keep them effective.

I had an episode where antibiotics failed after some days or weeks of treatment two times in the past. But they worked again some time later. The microbioma of ileum and pouch is much less stable than that of a colon, so chances are good to get rid of resistant bacteria again.

Unfortunately I cannot help you with (under-) weight issues, because that's what I'm dealing with myself. But keeping inflammation in check is important to have a stable health and weight in my experience.

In terms of diet I eat only little red meat and hardly any pork. Experimenting with (non-) agreeable foods is a long term engagement. You may want to look up foods and ingredients that are known to be inflammation drivers.

@SteveG posted:

Derrick, my situation was similar to yours, except that chronic pouchitis and ileitis started right from the beginning after takedown in 2004. I wonder why you were put on Entyvio first, usually pouchitis is treated with antibiotics as a first step.

I was given antibiotics (usually Cipro & Flagyl as a combination) only occasionally for many years, when my health was so bad that I had to go to hospital. Those antibiotics always helped me significantly within 2 days. But I was never recommended to take them long term or even on myself when things turn bad.

For the rest of the time inflammation was mainly untreated for about 15 years, besides alternative treatments, probiotics, a lecithin study and a microbiome transfer study. All of that without success.

9 years ago I started several treatments including Entyvio (about 6 months), Remicade (= Infliximab), Adalimumab, Stelara, Xeljanz, azathioprine. None of them really helped.

4 years ago I started taking antibiotics regularly, at first only once a month for about 5 days, then chronically a year later. I got a c. diff infection after 4 weeks of Cipro & Flagyl, obviously a resistant stem. It was treated with another antibiotic called vancomycine.

Some time later I started again with Cipro & Flagyl, now lowering the normal dose after about 5 days when digestive issues had settled. I think it is important to find a sufficiently low dose of antibiotics to keep a good gut health on the one side and relieve your body (esp. the liver) of stress from the meds on the other.

In your situation you need to find a medicine that helps you, either antibiotics or a biologic or Entyvio or likewise. Entyvio should not take much more than half a year to show effect, otherwise you may try another med. In the meantime adding antibiotics to keep inflammation low is advisible. Rotating antibiotics (as CTBarrister suggested) or staying off them for some weeks can help to keep them effective.

I had an episode where antibiotics failed after some days or weeks of treatment two times in the past. But they worked again some time later. The microbioma of ileum and pouch is much less stable than that of a colon, so chances are good to get rid of resistant bacteria again.

Unfortunately I cannot help you with (under-) weight issues, because that's what I'm dealing with myself. But keeping inflammation in check is important to have a stable health and weight in my experience.

In terms of diet I eat only little red meat and hardly any pork. Experimenting with (non-) agreeable foods is a long term engagement. You may want to look up foods and ingredients that are known to be inflammation drivers.

It’s interesting you mentioned cdiff. I was on cipro recently and it did great for me. Was down to 5 times a day and awesome. Then I flipped from one day to the next.  My frequency doubled in a day, feel more dehydrated, even I ate I’d still go, definitely more watery, I notice green mucus. All of this happened basically overnight. I am getting checked for cdiff now.

To answer your question about why go straight to entyvio and not antibiotics first, well, that was my problem with it also. I had that same very question. He told me it could treat both of them so he did that. My problem was I had no bridge and entyvio takes forever to work. It’s been working a lot better and actually before everything flipped I was still feeling great a week and a half later after having my first maintenance infusion so I am hopeful for that.

I pushed to be put on antibiotics to have more relief and I definitely was getting it until this massive shakeup last week. I was at the point I didn’t think about it or notice anything really and my fifth time going for the day was at 9:30pm-11:30pm. Sometimes I didn’t even go 5 times and was 4 but more consistently it was 5.  The whole time on cipro I didn’t go any more than 5.

It's good that your stool is being checked for pathogens. Continuing with Cipro makes no sense in this situation. Perhaps another antibiotic can help, if it is a bacterial infection.

My new normal is also 5 to 6 BM a day since inflammation is treated effectively. Before it was 7 to 10.

Your situation sounds very much like mine as 7-10 was mine before starting cipro and cipro got it down to 5 in 24 hours. I was doing great for a week and a half and then all the sudden from one day to the next, it was like it stopped working and everything shot up. Urgency, frequency, everything and then started with night sweats and not feeling great because of it all. Seemed odd it was working so well the would do a 180 to the point it’s worse than I felt prior.

I was in such a situation the first time that antibiotics got ineffective, many years ago. It was about one week after starting a 12-day antibiotics treatment. I noticed that my output began to smell again, while it was almost odourless before when on antibiotics. Also urgency returned and BM frequency went up in no time. But symptoms were not worse for me than before the treatment, so I finished it although it was ineffective then.

In my opinion this was caused by resistant bacteria stems. For those there are ideal circumstances when most other bacteria are killed by antibiotics. So the only appropriate measure is to stop current antibiotics, check for pathogens in the stool and try another antibiotic if appropriate.

Steve,

Thats the plan for right now. We shall see what it comes back as but I agree with the bacteria part. I wouldn’t have felt under the weather and slight chills/sweats all day if it wasn’t something like that.  The sweats are similar to if a fever broke. Only way I could describe it but I don’t have a fever and feel off and not great but not really sick. So it’s just different.

No cdiff I guess is good but that means something really bothered me and my pouch became very very angry. Any suggestions on how to do this would be great!

Did your doctor also check for other pathogens (Norovirus...)?

Could it "just" be an additional stomach flu, which can also come along with fever?

I believe he only put in for cdiff. I am feeling better today and consistency had been improving, still have yellow but I have since my pouchitis started. The sweating has improved. Things seem to be calming down but I still don’t know if it is something pathogen wise or if it was like a flare because I ate something that did not settle well.