There’s a risk/benefit calculation with this kind of invisible problem. The conversation with your doctor should include the risks of inaction and their likelihood. For example, how likely is it that you’ll develop a pouch inlet stricture, given the degree of inflammation actually observed? How do you feel about stricture dilation vs. ongoing medication? That sort of thing.

Thanks Scott! So yes I have a tiny inlet structure that I’ve had for more than 10 years. I get it balloon dilated -it’s totally fine! This is why I’m at odds with starting such a drug. I had UC since I’m 16 , j ouch since 2003 and I’m now 55

Is your doctor seeing a worrisome change, or are things actually stable? It’s hard to have reliable instincts about problems we can’t perceive directly.

So for perspective I see dr Shen as I have had for many years but my insurance requires me now to have pouchoscopies locally ( I work for a large famous teaching hospital) they will not pay for out of area procedures anymore !

the local dr is a big fan of the entivio as the  inflammation remains consistent since she’s been scoping me. (Three years) She sees no downsides only positives. Shen sees no real changes in the inflammation-as he gets photos and reports.

Im not new to pouch complications just very concerned about dumping in more medications here with little promise of “healing” I’m not sure what the risks of leaving it alone really are. Perhaps that is where I am stuck

I also left chronic pouchitis with pre-pouch ilieitis mostly untreated (except for alternative treatments) for many years. Then at some point, after a fissure op, I decided to fight that inflammation with the recommended meds no matter what.

Over several years I was treated with Remicade, Entyvio, azathioprine, Stelara, Xelianz and a Humira derivate. None of them really helped me, but I had only little side effects. So I wouldn't worry too much about side effects, those of a long term treatment with (systemic) cortisone for example are a lot bigger.

A lot of people find help in one of those meds, that's individual. If you can reduce inflammation significantly for some years and feel more healthy, why not.

I was never happy with meds that mess around with my immune system, as such a treatment is not really causal in my eyes. But I also wanted to see, if the positive effects wouldn't overweigh.

In the end I found that chronic antibiotics use (those that helped me from the very beginning with pouchitis, though I didn't recognize how much for many years) was the best solution for me.

Another thing that helps with inflammation in the (pre-) pouch area is budesonide, a locally effective cortisone. I'm taking a little dose for 10 years now.

@katenet posted:

I’m not sure what the risks of leaving it alone really are. Perhaps that is where I am stuck

Kate, I have been through over 16 years of treating pre-pouch ileitis, as well as strictures at the J Pouch inlet, and my feeling is that the answers to these questions may be different for you and Steve and me, because of (1) the individual nature and extent of our respective pre-pouch inflammation and how aggressive and symptomatic it is and (2) individual-variant responses to treatment.

The answer to your own question, though, seems to be a bit dismissive of the general concern one should have about developing strictures. Strictures are a sign that the pre-pouch ileitis is being poorly controlled- and are not a good thing. For many years, I would say from 2012-2021, I was warned year after year by my GI: "you are tightening up at the J Pouch inlet. If I can't get the scope through your inlet, you are getting dilated."

Finally in July 2021, he couldn't easily get the scope through, and he later told me "you are strictured at the inlet and you are getting dilated." At that point I was 7 mm. They sent me to a great advanced endoscopist at Yale and in 3 dilations over the course of 4 months (every 6 weeks), I was dilated from 7 mm to 18 mm.

These procedures should not be viewed by you or anyone else as not a big deal. They are a big deal. First, it's a sign that your treatment, whatever it is, isn't cutting it. The fastball isn't striking anyone out. Being strictured isn't a healthy and normal anatomical process. Second, balloon dilations carry a few risks, like perforation, sepsis, and death. These are risks that nobody should want to take on in the interests of doing nothing.

I do appreciate your concern about being on meds. I share and have those same concerns. In my case, I rely on what my doctors tell me and they believe my treatment (Remicade, and antibiotics as needed) is and has been keeping me at a good baseline, and that I need to continue doing what I am doing.

There are no right or wrong answers to your question. It could be that if you do nothing you will be fine and maybe only need very occasional dilations. Or, they could become more frequent. There is no way for us to know. But you should scope every year, and if you and your doctors see a change that is not positive, make adjustments as needed. Good luck.

These responses are just so well written and clear gosh feel grateful to have you all

thank you for this-I know none of us have a crystal ball and the truth is I’m very scared. The doctors minimize the effects of the biologics but I’ve worked in health care for 28 years myself and am very skeptical. This has perhaps made me overly cautious.
I trust these doctors very much however I am the one who has to live with the consequences. Is it true you can’t stop them once you start?

@katenet posted:

Is it true you can’t stop them once you start?

With Remicade, it's not true that you can't stop once you start. What is true is that once you stop, you can't start up again. The ship will have sailed on it. Of course, if you develop antibodies, it will come to an end as well.

Good morning pouchers!

So biopsies show widespread inflammation-dr ordered fecal calprotectin test -came back normal showing no inflammation ? Anyone else having these results?

The biopsies are much more reliable than the calprotectin test.

Thanks Scott ! Yes I now wonder the point of the test ? This is a new doctor

If the calprotectin level turned out to properly reflect inflammation in your gut then it could be used to monitor your inflammation less invasively.