Biospy

It’s common for the terminal ileum to be inflamed. This is usually attributed to “backwash” stool that drifts out of the J-pouch. If you don’t have any other symptoms or signs of Crohn’s then it probably isn’t that. It is worth trying to manage the inflammation in any case - a chronically inflamed terminal ileum can lead to strictures, which are no fun. You don’t say if you’re currently on any medication, but some tinkering may be advisable to help prevent future trouble.

“Normal” is probably a poor term to use for any j-pouch biopsy result. But, I get your meaning. Like Scott said, inflammation is common. However, severe active inflammation with ulceration is a concern, and should be treated.

Is it Crohn’s? The biopsy is only one measure. It is the gastroenterologist’s job to piece together all the evidence from your history, current signs and symptoms, and response to treatments to determine what the current diagnosis is. For me, it does not really matter what it is called. What matters is finding a treatment regimen that is effective and you are willing to be on.

That is what led me to eventually being on Remicade infusions with oral Imuran. I had chronic severe inflammation with ulcers that was treated with long term antibiotics. Symptoms improved, but it was Remicade that actually put me in long term remission for years (going on about a decade now). I was never formally diagnosed with Crohn’s.

Jan

I'm on no meds.....been avoiding it. I have a call with my gi doctor next Thurs and she already mentioned entyvio. They took this biopsy bc they were fixing a stricture, that turned out to be 2 strictures in the terminal ileum.  I have avoided meds like the plague.....but I feel like it's inevitable.  I'm pretty bummed. They did 2 rounds of dialations....the 1st dialtion they saw "some ulcers". The dialtion doctor said "if I had chrons, it looked like mild crohns". Then I got the 2nd dialation and this biopsy and it appears ti be more complicated.  Ugh. Thank u for your feedback.

Jan....is your inflammation in the terminal iliem? And did u have ulcers? Any similarity ti what I have going on? I had my colon removed to avoid remicade so it's so disappointing to take meds....I feel like u had KY colon removed to be med free. I'm just bummed, super bummed

My inflammation had been in the pouch and the rectal cuff. I had some mild inflammation in the ileum outside the pouch.

Unlike you, I did not have my colectomy to avoid medical treatment. At the time, Remicade was experimental for UC and not a covered option for me. So colectomy was to get off prednisone and not bleed to death. I did OK for some years and gradually developed chronic pouchitis. Then I developed enteropathic arthritis and I started a biologics, starting with Enbrel, then Humira, Simponi and Cimzia. They were OK for the arthritis, but did not control the pouchitis. Eventually, the decision was made that Remicade was a better choice than long term antibiotics for the pouchitis.

So, no, I do not think your case is the same as mine.

Personally, I am thrilled that these medications exist to provide me with a quality of life I could not have otherwise. They allow me to enjoy my family, travel, camp, eat out, and just enjoy basic things people take for granted. Maybe being a nurse I am more willing to accept the risks of medical treatment. But, I also understand that there is also an inherent risk of not treating. Not treating makes for chronic inflammation that can lead to dysplasia and/or cancer, strictures, perforations, etc.. There is no “free lunch.”

To me, quality of life is more important than a perfect life. I wasn’t getting that anyway! But, there is no right or wrong in this regard. You just have to decide what risks you can live with. One thing for certain is that you do not have the option of going back in time before you had IBD. My husband and both my sons also have UC and we all accept life as it is, not what we wish it was.

Jan

Yeah, the strictures are a problem. I understand a blockage in 2009 and was awful so I'd do meds over that, for sure.

Thank u for sharing your story 🩷

Almost forgot, chronic inflammation can also cause strictures. Food for thought…

Jan

So, if I have chronic inflammation in the terminal ileum,  how can they tell if I have more issues farther up? My gi doctor, who is new for me and also new in her practice, had a lot of blood tests done and stool sample.....and all were pretty good...2 were just over normal.....stool was 56 and normal was up to 50....so I was sure that my biopsies would be okay.

@Jan Dollar posted:

My inflammation had been in the pouch and the rectal cuff. I had some mild inflammation in the ileum outside the pouch.

Unlike you, I did not have my colectomy to avoid medical treatment. At the time, Remicade was experimental for UC and not a covered option for me. So colectomy was to get off prednisone and not bleed to death. I did OK for some years and gradually developed chronic pouchitis. Then I developed enteropathic arthritis and I started a biologics, starting with Enbrel, then Humira, Simponi and Cimzia. They were OK for the arthritis, but did not control the pouchitis. Eventually, the decision was made that Remicade was a better choice than long term antibiotics for the pouchitis.

So, no, I do not think your case is the same as mine.

Personally, I am thrilled that these medications exist to provide me with a quality of life I could not have otherwise. They allow me to enjoy my family, travel, camp, eat out, and just enjoy basic things people take for granted. Maybe being a nurse I am more willing to accept the risks of medical treatment. But, I also understand that there is also an inherent risk of not treating. Not treating makes for chronic inflammation that can lead to dysplasia and/or cancer, strictures, perforations, etc.. There is no “free lunch.”

To me, quality of life is more important than a perfect life. I wasn’t getting that anyway! But, there is no right or wrong in this regard. You just have to decide what risks you can live with. One thing for certain is that you do not have the option of going back in time before you had IBD. My husband and both my sons also have UC and we all accept life as it is, not what we wish it was.

Jan

Hi Jan,

May I ask how long you’ve been on remicade? My doctor gave me choice between remicade & Skyrizi. I’ve seen a few posts stating remicade is working very well for inflammation & pouchitis. I chose skyrizi because it seems to have less side effects, but maybe I shouldn’t be looking at that and look for something that actually might work better for me.

Thanks,

Yvonne

I have been on Remicade since 2016 (on biosimilar Inflectra since 2018). I would not second guess your choices. Skyrizi was not even available when I started Remicade and I had failed other biologics. There just is more data with Remicade because it has been around so long. So, I may wind up on Skyrizi at some point.

I just started with a new GI and we talked about the newer biologics. But, he’s of the notion of sticking with what works. He even said he is not inclined to mess with my meds due to my being over 65. He has learned that it is easier to deal with side effects IF they occur than stop meds out of side effect concerns.

Jan