Crohns Diagnosis after J-Pouch surgery

The diagnosis is irrelevant. It’s inflammation of the bowel that needs to be treated. That’s all that matters. All the treatments for bowel inflammation are the same or similar so what you choose to call the inflammation doesn’t particularly matter any more. What does matter is how you will respond to the treatment whether it’s antibiotics or, as in our cases, biological drugs like Stelara or Remicade.

Both of my last two GI doctors essentially gave up using labels like “colitis”, “pouchitis” or “Crohn’s”. Labels like these meant something 50 years ago when medical science didn’t know much about inflammatory bowel disease. Now we just call it inflammation. Inflammation is not good, and it needs to be treated. So worry about the right treatment which will keep it in check and don’t worry about the label for it because it’s meaningless. My technical diagnosis is Crohn’s, but it’s well treated. Would you rather have well treated “Crohn’s”, or “pouchitis” that can’t effectively be treated and results in loss of J Pouch? This is why worrying about labels is so utterly pointless. We all respond to treatment for inflammation differently so the labels used for the inflammation being treated don’t in any way become predictive or suggestive of an outcome.

You are a young guy and apparently in good shape, so I would say your chances of treating it are pretty good.

That's a good way to look at.  I am hopeful it will respond to the meds.  Remicade is a no go.  I tried it and got syrum sickness which was rough.  Stelara is supposed to be a superior treatment.  

I guess my initial post was reaction to thinking you are "cured" from the disease that caused so much havoc in your life only to find out that isn't the case.  I am fairly young and try to stay in good shape.  I hate taking the meds,  that is the hard part for me.  I don't like the idea of relying on a medication the rest of my life to maintain health.  I have however come to terms with it.  Like you said,  the most important thing is getting rid of the inflammation.

Thanks for the perspective.

Bloke,

I got my J Pouch in 1992- probably before you were born- and I have been treating inflammation in it since around 1994. From 1994 to 2015 that treatment was antibiotics and mostly worked, although I had to also change my diet. I started Remicade in 2015 and in the 4 years since the inflammation has been cleared up in the J Pouch. I have very mild inflammation in the rectal cuff and J Pouch inlet areas. The J Pouch inlet area was traditionally the area where I (and many other J Pouch patients) see the trickiest inflammation.

From 1992 to 2019- 27 years- I have had a good quality of life. I worked full time the last 27 years as a trial attorney.  And I will probably continue to do so until I die. What I can tell you is that you can have a good life while taking meds for chronic inflammation. Many many people are on biologicals now whether Remicade, Stelara, Humira, Entyvio. When I go to the infusion room it’s always full. So I wouldn’t be too caught up in letting being on meds deter your mental outlook. I have had a very good life for 27 years and have no complaints or regrets. Obviously I would prefer not to have IBD, but it is being controlled. And it can be controlled in your case as well. Good luck.

I'm agree with CT, what we call inflammation doesn't matter so much as treating it.  I am so thankful for the new medicine that is available to give most of us a good quality of life - much better than before surgery. 

If the inflammation can be controlled with medicine and they provide me with, not just functioning life, but a chance to live it to the fullest, then I say go for the medicine.  For me they have a life saver in more ways than one.

Just throwing my two sense in

That happened to me. In 1994. And after my first bout of Crohns it never reappeared. I have never had to take medication for it. I get pouchitis once in a blue moon, but the immune disorder hasn't been the cause, it's the bacteria out of balance. Keep positive!

• I was just about to post on my thread about my second Remicade treatment today when I saw your topic about being diagnosed with Crohn's after j-pouch surgery.  Welcome to the club!  I had my j-pouch installed in 2000 and in 2016 my GI diagnosed me with Crohn's.  I had a different GI in a difference province also recently confirm that diagnosis.  Hence, I am now on Remicade.  I will go to my Remicade thread now for a quick update.  All the best.

Again, whether the diagnosis is confirmed or not doesn’t matter and it really isn’t changing anything. It’s inflammation, and inflammation needs to be treated. Remicade is also given to patients with ulcerative colitis and pouchitis, and one of my coworkers who has UC was just started on it. Be patient with the Remicade- it could take months to work. That’s why they do 0-2-6 weeks to start.

What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis?

The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this.

Sometimes you just have to drink beer and forget about our health issues...

capper posted:

Sometimes you just have to drink beer and forget about our health issues...

I hope it goes well! Enjoy! 

Bloke,

That was always my fear when I decided to do the jpouch surgery as Crohns runs in my family.  So far no Crohns BUT I have had issues since my takedown.  It seemed like a complete waster of time since I was barely feeling even a little bit better.  Remicade didn't do anything before surgery but was effective for 10 years.  They just switched me to Stellara (as of 1/3/23) since I developed psoriasis from it.  I ended up with a bowel "obstruction" that turned out to just be really bad inflammation in my jpouch.  I was upped from an 8wk to 6wk frequency and it was about a year after that everything else started.   I am hopeful but it has been 3 days and I am already having mild issues (tired, brain fog, vertigo) but I am hoping those subside soon.  Best of luck to you, this sucks but we are all in this together right?

I have found following a low FODMAP diet, limiting dairy, and gluten helps me a lot. I met with a nutritionist, when I was discouraged about getting pouchitis quite a bit, who deals with digestive issues. She was incredibly helpful. Eating smaller amounts of food also helps.  I also take an antibiotic once a week. Whenever I cheat my gut quickly reminds me what I can and can’t eat. I hope this helps. It is tiring  at times to constantly have to think about gut issues.

My story similar to others here:longterm UC followed by JPouch 2001 with pouchitis pretty much whole time after. Diagnosed in past couple yrs with Chron’s.  I tried Remicade and had adverse reaction (severe psoriasis) and now on Stelara.  Only moderate control though - fecal calprotectin levels still >400 and I am taking Stelara every 30 days (double the typical dose).  So yes, inflammation still there….   I am told the drug Skyrizi (link below) may be better suited - will hopefully make this transition soon.  At age 57, I may eventually go for reversal and live with ostomy in “old age” (whatever that is!).  My GI suggests that IBD systems ‘should’ go away up reversal.  Would be curious to know the data on this phenomenon.

My good wishes are here for anybody commenting on this topic - we all fight to make the best decisions based on available info and it doesn’t always work as planned.

https://pharmanewsintel.com/ne...nt-of-crohns-disease

I have been on Entyvio for 7 years for inflammation but due to a new recent diagnosis I might not need it so this is the new problem, to continue or not?
And yes in the beginning I was extremely nervous about taking it and now I’m extremely nervous to possible stop.

Starting Skyrizi next week.  Fingers crossed. Remicade didn’t work.