Hello Friends,

Is it common to be diagnosed with Crohn's two decades after J-Pouch surgery? The last year or so I've had an odd pattern of what felt like constipation -which turns out were actually small bowel obstructions. I suppose the good news is that my Pouch "looks great!" according to the GI team. I'm currently on a very familiar Prednisone taper then long term options will be discussed. A few questions. Will my Pouch be at risk with Crohn's at the terminal Ileum near the top of the pouch? What drug options will I have to consider after Prednisone?

Thanks!
Original Post
I would not say it is common, but certainly not unheard of. It is getting more common as more and more folks live with the j-pouch for longer and longer periods. It seems to me that you've had a lot of problems post op (if I am remembering correctly), so it sort of makes sense that eventually, somewhere down the line, enough evidence would pile up to point more definitely toward a Crohn's diagnosis. It really could happen to any of us.

Your pouch is in no more danger than it was before the diagnosis change. You might even be in better shape, treatment-wise. That is because there are more treatments approved for Crohn's than UC. Yes, you definitely want to seek something that will replace prednisone, since that should never be considered the long term maintenance drug. You can consider all the UC drugs that you have not tried yet, methotrexate, and then biologics (Remicade, Humira, Cimzia). There are more in the pipeline too.

A number of folks here really got their IBD under control once they were diagnosed with Crohn's and on the right treatment. Humira seems to be the treatment du jour these days. But, sadly, yes, some do wind up having to have an end ileostomy. You'll just have to see how it goes.

Good luck!

Jan Smiler
I had my pouch out the end of June. I always had chronic pouchitis and was scoped every years by my gasto and it always showed UC. Last year the scope showed stricture in the middle of the piuch and showed it was enlarged. That is when I knew it had to go. When surgeon went in inflammation above the pouch. The biopsies showed chrons in pouch and a little above the pouch. My guess is having the chronic pouchitis does something to change to chrons? Doesn't Dr Shen have some kind of theory that chronic pouchitis can turn in to another kind of IBD. I was floored. I am dealing with lots of issues post removal that I never dreamed I would be dealing with. At some point I will start the biologics.

Good luck, I know you are dealing with alot of issues. In the end you just have to pick a treatmen and pray. At lest you at CC so you have doctors that know the most about IBD.
I have not officially been diagnosed with Crohn's but inflammation was spotted in my ileum 30 cm above my J Pouch for the 1st time in 2008, 16 years after I got the J Pouch. It is still only "suspected" Crohn's because the pattern does not seem to fit typical Crohn's, and there is a suspicion that "backwash" stool and fecal stasis due to my narrowed bowel just above the J Pouch could be causing the pattern of inflammation in my ileum above the pouch.

In effect, my pouchitis has spread to my ileum.
Hi,
I'm a case in question: Pouch for 30 years before being re-diagnosed as Chrohn's. nevertheless, it would appear that this is new class of inflammation, some are calling it back-wash ileitis. In short, I had a lot of pouch trouble for a while and ultimately a fistula developed putting me onto antibiotics for almost two years and hope to be able to control things by rotating for at least the next few years (or decades Wink... It's a new ballgame whose rules we are making up as we go along with DJBHusky leading the way for long-term antibiotic use. I rotate Augmentine and Cipro because allergic to Flagyl and the one that is supposed to stay only within the GI tract isn't available yet where I live. Is it worth my going to the trouble of having it sent over to me?
I also am coming to terms with possible Crohns one biopsy showed a granuloma another showed idiopathic IBD all taken from within the pouch and at the inlet. My pouch was constructed in 1987. Have had issues over the years with obstructions and finally quit eating any fibre. Had a limited diet until last Aug. 2011 could not eat at all only fluids would go through. Any how what was suppose to be UC now is something else. Tried methotexate with no help also tried dilation no joy there either am now on prednisone started at 20 a day which has helped a great deal can only get down to 15mg then the issues are back. After reading about the possible side effects from biologics I think prednisone may be the lessor of two evils. Am to see a surgeon in To to see what he has to say but hope to stay on the pred as long as I can. Am having a lot of issues with indigestion 4 zantac, 2 nexium and sulcrate times 4 a day still does not stop the discomfort. Am going to ask my GI next Fri to have a look to make sure I still have an esophagus(sp?)Life is just a bowl of cherries too bad about the pits!!!!
My daughter just had her J pouch surgery a year and a half ago. Before the surgeon would do the surgery he had her biosopy and tissue results, as well as colonoscopy photos reviewed by different pathologists to get a secure diagnosis of colitis because he said that many people were mis-diagnosed to begin with and after awhile the inflammation just moved to other intestinal areas because it was crohn's. He would not have done the surgery if he felt there was any indication that it was Crohn's. So, I think it is more common than people may realize.
I think it is quite common but maybe because you have one auto-immune disease the odds are not in your favor for another problem cropping up. Also the tests they do are not all 100 percent. My GI said he went himself to the lab after the colectomy to check out the bowel as he would only recommend the j pouch if it was UC. I think it maybe like someone here mentioned the small bowel was never ment to act as the large bowel. Hence the problems.
Yeah, but no matter how sure you are you hace UC at the time of surgery, it could still be Crohn's that just has not manifested outside of the colon....yet! It can show up decades later. Just like my arthritis did!

There is one thing that you may be able use: if smoking tended to be protective when you had a colon, more likely it was UC. If not, or worsened your disease, more likely to be Crohn's. But even that is not consistent. They just cannot rule out Crohn's with any certainty.

Jan Smiler
Actually I did smoke for a number of years quit in Jan. 1985 started symptoms of UC in June of that year and down hill from there. My GI at that time mentioned that smoking appears to offer some protection re: UC. It appears the pred. I am on has stopped being helpful the symptoms of obstruction are now back even though I have gone back to the full dose I started on. I had been trying to cut back as my GI requested. I wonder if my system does not like this fooling around. It is back to ensure and yogurt I had to take a couple of immodium to quiet down the cramping it appears once the cramping starts it just will not stop even though there is nothing left in there... not a great day to have to go for a mammogram.
Jan is correct, they can do a million tests and have them all negative for Crohn's and you could still be found to have Crohn's after J Pouch surgery. No matter how certain they can try and be, there is no pure or absolute certainty.

Keep in mind I have been negative on a CT Enterography and on a Prometheus Blood Test for both Crohn's and UC. Yet I have chronic inflammation in my pouch and in my ileum above the pouch since 2008.

Basically the doctors do their best to try to confirm a UC diagnosis and then you roll the dice and hope they are correct. But if the entire colon is inflamed and has to come out, the diagnosis is irrelevant in terms of the decision to have a colectomy as you are just waiting for a cancer diagnosis or a perforation. I had dysplasia in my colon and it was dissolving in my surgeon's hands when he removed it so the possibility of me having been a Crohn's candidate at that time, and using that to deny the surgery, likely would have caused my death some time in the 1990s. However both my GI and my surgeon were quite certain of a UC diagnosis and there was no evidence at that time of any inflammation in my ileum or other sign of Crohn's Disease.
Hello Friends,

Thanks to all of you for the input. My current Dx was made after Hospital admission, an Ab/Pelvis CT and a visual scoping with tissue biopsy and lab work. My GI Doc seemed very pleased with how the pouch is holding up and ever so less concerned with the Crohn's findings which he felt were much more treatable in a practical sense.... This is my 3rd week on Prednisone and I feel fine in the GI department except for the common flu-like side effects of Prednisone. I have been a light smoker for many years and that issue has come up as a must stop activity..... Argghh, I just love smoking, crap! Obviously if my pouch was at risk I would absolutely have to quit, for now I'm going to taper down and try to be happy with fewer cigs....

Like many of you -it has been a very long road, me and my pouch. Overall I applaud my pouch for functioning so well for so many years, truly a marvel of medical invention. I always hesitate slightly when I'm considering responding to a new pouchers questions about when they will feel 'normal' or be 'over' the hard part, or out of the woods etc... You never get over it , you're never out of the woods and it's impossible to predict how miserable or ecstatic you may be in the future. It's a highly variable and complex process and it's a very long process that needs to be considered in years or decades and not in months or days. A single day can swing wildly from feeling great in the morning to considering an ER visit in the evening.


MK

I recently had a scope done of my pouch.  I have never really felt great since my J-pouch procedure in 2004.  I would have better days then others, but never felt like I could not know where the nearest bathroom was....always felt some discomfort, gassy and tired. I had really bad days and was diagnosed with pouchitis, put on antibiotics and felt better until I stopped...then went back to baseline.  My symptoms started worsening the last few months and so I scheduled a scope.  I was told after the procedure that there was inflammation in the pouch and ileum along with some lesions that were consistent with Crohn's. There were two strictures, one on either end of the pouch as well..... when the test results came back the diagnosis was Ileitis.  There was inflammation and ulcerations.  My surgeon referred me to a GI doctor.  I am making an appointment... but from everything I have read, it sounds like I am on the road to  a Crohn's diagnosis.... and I can't even wrap my head around that.

Wendy, if you feel well on antibiotics and deteriorate when you stop them you may just have chronic (antibiotic dependent) pouchitis. Have you ever tried staying on antibiotics? Plenty of us do that. Ideally you can rotate between several different antibiotics, if you can find a few that work for you.

I have had Crohn's for about 5 years now , has progressed to my J pouch ( installed1985 at CC , UC since age 20 in 1965) started treatment with Canasa, then Remicade infusions for 3yrs now, which slowed down the diarrhea but is not helping much with inflammation,  about to start on Entyvio with hopes of mitigation. Still on Canasa, unknown if it is helping unless I stop. I buy it "cheap" from Canada out- of- pocket. Been lucky symptom wise from these reads, I just have annoying urgency issues, some diarrhea, gas. Imodium helps if I time it right. Concerned about eventually loosing my pouch, age 74 , staying active as much as possible, paying more attention to diet, little red meat, grease. Not familiar with a lot of medical terms mentioned, just an average IQ here, should have paid more attention, just retired maybe now I will.

Wendy,

Your scope findings make your situation virtually identical to mine, including the stricture at the J Pouch inlet. There is nothing to wrap your head around. It’s pretty simple. We have inflammation in the same areas. What you call that inflammation doesn’t matter. What does matter is how it responds to treatment. In my case it responds well to Remicade and low dosages of antibiotics. I have had my J Pouch 27 years and the last 12 or so with this same situation.  Chronic dependent antibiotics but lowered dosages with Remicade. Don’t worry about the diagnosis. Worry about treating that inflammation. My stricture at the J Pouch inlet has vacillated in narrowness over time. If they can’t get a scope through the inlet they will balloon dilate you. Doesn’t sound like they needed to. As long as a scope can be poked through, no dilation for you. Focus on your treatment so things do not get worse and you need a dilation. 

You sound like a Remicade candidate to me. Maybe Entyvio.  If you haven’t tried chronic rotating antibiotics as per Scott’s suggestion that absolutely should be attempted before biological drugs. I rotated antibiotics for 20 years but started Remicade in 2015. Due to slippage and stricturing.

My situation is similar.  My Crohn’s dx (15 years after J-pouch) came from a Prometheus test, which i believe i got because i had developed persistent joint aches.  Still not sure how accurate that is.  But as someone else mentioned, that diagnosis may open up more treatment options.  

I had not thought of the possibility that Crohn’s diagnosis opens up additional treatment options but it could expand the scope of insurance coverage for treatment.

That being said, the treatments are exactly the same for both UC and Crohn’s when inflammation is difficult to control. One of my colleagues who has his colon is on Remicade for resistant inflammation in his colon after Asacol proved ineffective after some years. Patients who have pouchitis and Crohn’s that do not respond to antibiotics are also given Remicade or other biological drugs.  Therefore what you call the inflammation or its precise location in the bowel may not make a difference in the ultimate treatment if it proves resistant to first line treatments. The only conceivable relevance of a Crohn’s diagnosis is to expand insurance coverage for these identical treatments - and that’s what you want. For that reason, you want your doctor to label the inflammation even if the label is meaningless in terms of the ultimate treatment and the medical science behind the treatment. There is no other relevance to these labels, however. It’s bowel inflammation caused by immune disorder, in different locations.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×