Very good question! Sure, it definitely could be a possibility. However, it would be difficult to determine if there was a cause and effect type scenario, or if those people were sort of "predestined" for that outcome. They hope to get closer to unraveling those mysteries through genetic research. One thing they hope to learn is who would best respond to specific medications, rather than using the trial and error methods we now use. They also could learn who should opt for colectomy at an earlier stage, which may improve outcomes.

Remember, only about a third of those with UC wind up with a colectomy, so there is something different about that subset of UC patients to begin with.

Jan

Hello...funny that I just read this.  I have an appt. with CCF Tuesday, and have been really struggling for awhile.  My j pouch is going on 26 yrs. this April and the past 6 yrs. have been a struggle.  Pathology report ? crohns.  Can't  get Dr. to confirm it 100%.  But symptoms are right on .  Have been taking cipro off and on now but this past treatment was for 90 days.  Still no improvement.  Insurance co. denied prescription for another antibiotic (I forgot name already) U.C. and cuffitis still present in cuff area and 2 ulcers in j pouch and now anal fissure.  (major ouch!!!) (had botox no success) Going to agressively ask Dr. Shen to please treat for crohns with hopes that symptoms improve.  But I too wonder if crohns will attack j pouch or if I had crohns all along?

They say you don't truly "convert" to Crohn's later on. It is just a change in the working diagnosis and you had the same disease all along. I suppose you can look at it as if UC was a misdiagnosis, but it was the best conclusion based on the available evidence at the time of colectomy. It is an imperfect process. 

I agree, if the current course is not effective and there is a high suspicion of Crohn's, you may as well assume that it is and treat accordingly. Antibiotics are a treatment for Crohn's, but far from the only thing.

if it walks like a duck, quacks like a duck, and looks like a duck, it probably is a duck.

Will it attack your j-pouch? Who knows? Just like UC Crohn's tends to have a random course of relapse and remission.

Jan

Good Evening Jan...thank you for response.  I agree...a duck is a duck!  I was diagnosed with U.C. in 1979 at 19.  I'm sure with my father's medical history and my symptoms dr.s did their best at what they had to say it was u.c.  I wasn't at all familiar at the time of Crohn's just U.C. because of my dad.  So I went with what was said.  I did have 8  months of remission while I was pregnant. (funny how the body works) but it reared it's ugly head 6wks after delivery.  Finally had surgery in '89.  Doing good up to 6 years ago.  Never had any problems..was blessed that way.  Now though ups and downs but the past 3 years have been a struggle. Hoping Tuesday's appt. will go well and I can start some treatments.  Thank you again.

Yeah, the digestive system is one of the most complex in the body. the same is true of autoimmune diseases, and IBD in particular. It seems that the more they discover, the more they find that there is left to know. At least I think they are asking the right questions. But targeted treatment is just not available yet, at least not at the level that is needed. 

My life certainly has been improved since starting biologics about a decade ago. Not perfect, but improved. I never did try Remicade though.

Jan

Jan, I just don't buy the "misdiagnosed" idea. I'm sure that this is true of some patients, but I hear too often about people getting their diagnosis changed with UC positive pathology on biopsies and colectomy specimen. I have also seen literature by Dr. Shen using the term "de novo Crohn's" which sounds wholly appropriate.

There especially seems to be a group of patients who have had their pouch for at least a decade with excellent results... and then develop chronic pouchitis/Crohn's.

I have been searching so hard for a study comparing rate of Crohn's rediagnosis in permanent ileostomates versus j-pouchers. Do you have any information on this?

I think the most important thing is disease progression. Losing my colon was bad, but my small bowel is what is truly precious. I will rip out my pouch in a heartbeat if I think it is endangering the rest of my bowel. Does de-Novo Crohn's tend to remain in the pouch?

Fight, how did they diagnose your Crohn's? Was it just in your pouch? I'm so sorry to hear that.

Yes, you are right, that there is new evidence emerging that new small bowel Crohn's after proctocolectomy is a unique disease entity. However, this study does not indicate a j-pouch as being a risk factor for it, but having a secondary ileostomy for pouch failure is. 

Jan

My GI isn't convinced these changes are best called "Crohn's," thinking more along the lines that our genetic predisposition and our mucosal changes in the pouch to more "colonic" tissue is somehow acting as a trigger to kick start some new IBD type symptoms.

I mean, even "Crohn's" itself presents in a zillion different ways.

I doubt very, very much IBD is as simple as two sides of a coin (UC vs Crohn's), seeing as complex as we are finding the gut to be. 

rachelraven's post reflects what I have been told. This is what the scientific realities are, and tend to show why the frequent "I was diagnosed with Crohn's, and the sky is falling!!!" posts we see on this board border on being irrational, if one sits down and looks at what the research actually shows about subsets of IBD.  The traditional  two disease classification of IBD as falling under the UC or Crohn's rubrics appears to be completely outdated based on scientific research as of 2015, but it's convenient for the medical insurance industry to try to shoehorn every disease into one of the two categories rather than create new categories and change all their forms and billing classifications.

Bottom line, the actual diagnosis of what the symptoms are is not really relevant any more.  What is important is how effectively they can be treated.

Hello...what does de nuvo crohns mean?  I have had many scopes and biopsies done in the past 3 years and shows changes with "possible crohns identification" per Dr. Shen.  But here again, possible.  But with just being treated with antibiotics with no improvements...wouldn't you think I should be more aggressive with Dr. Shen and ask to at least try meds that target crohns and just not pouchitis, cuffitis, ulcers, c-diff, fissures????  And yes...the sky is falling when I hear the words ... crohns.  I have struggled with u.c. and now j pouch issues for more than 36 years!!! and now to think maybe..that crohns is in my pouch?  I definetly k now it could be worse...believe me I've seen worse in my own family with health issues..so I'm not about to throw myself a pity party...as you can tell...I'm a fighter...but I do believe as a patient going to a top notch dr. that I have the right to be aggressive in knowledge of disease and treatments.  

De novo simply means new, as in not previously seen. Does it mean you have a new disease? Maybe, maybe not. The doctors are intentionally vague, because they just are not sure. But, like CT said, it does not really matter what they call it. You have whatever it is. Often, a diagnosis change is more about accessing more treatment options, as insurance coverage often follows FDA approved protocols. 

So, yeah, it makes sense to be more proactive about discussions regarding treatment with Dr. Shen. But, I would not go so far as being aggressive (if that is what you really meant). Dr. Shen is an expert in pouch disorders, so I think he knows what he is doing. But, if you are not responding to treatment as you think you should, talking about alternatives and the possibility that this is not pouchitis, but an expression of IBD of some sort is appropriate. At the very least, you deserve to understand his plan and goals, and what the next step is. 

Jan

Good Evening Jan...yes that is what I meant being aggressive with starting some form of treatment not just antibiotics.  I really feel I need to get this under some form of control.  Can't sleep at night because of the pain and urgency to go and wearing pads now because of accidents.  Bottom is so raw and the fissure just won't heal.  So much pain!  Dr. Shen gave me B&O suppositories awhile back to use but I couldn't even get one in without doubling over in pain and then when I finally did insert one...I needed to have a bowel movement so that did no good!  It seems I go and then it feels like 20 min or so later I need to go again.  I just wish I knew why this all is happening now after 20 years of no problems.  (not complaining ... just wondering why?)  thank you again though for your support and knowledge.