For all those who initialy thought they had Ulcerative Colitis before the J-pouch Surgery and later discovered they had Chron's after the surgery, do you think that you somehow developed Chron's after the J-pouch surgery? Do you think that the surgery somehow cause Ulcerative Colitis to develop into Chron's? Or do you think you always had Chron's but were somehow misdiagnosed?
Replies sorted oldest to newest
Maybe someone will correct me if I am wrong but I do not believe UC can turn into CD. They are two separate forms if IBD. If the CD diagnosis comes after surgery, it was probably a misdiagnosed UC diagnosis.
This happened to me six months ago after 8 years of being a UC'er, I became a Crohnnie too. I had my pouch for 5 years.
I don't believe I was misdiagnosed because the symptoms that led to my CD diagnosis (fistulas, abscesses, severe joint, muscle and eye pain) are all hallmarks of Crohn's.
Are you struggling with this now, Pkitty?
I had a very hard time with the new diagnosis, both physically and mentally. No matter what anyone says about treatment being the same, it still was a blow.
I am now on Humira.
I don't believe I was misdiagnosed because the symptoms that led to my CD diagnosis (fistulas, abscesses, severe joint, muscle and eye pain) are all hallmarks of Crohn's.
Are you struggling with this now, Pkitty?
I had a very hard time with the new diagnosis, both physically and mentally. No matter what anyone says about treatment being the same, it still was a blow.
I am now on Humira.
My understanding is also that UC does not usually turn into CD.
Tammykathleen - did you have a promtheus test done before your surgery to differentiate whether you had UC or CD? Usually with UC the rectum is invoved, it is continous through colon and CD is more patch with no rectum inflammated - was that the case for you before surgery?
Tammykathleen - did you have a promtheus test done before your surgery to differentiate whether you had UC or CD? Usually with UC the rectum is invoved, it is continous through colon and CD is more patch with no rectum inflammated - was that the case for you before surgery?
The distinctions you mention are true, but not consistent. That is part of the reason there is difficulty in distinguishing UC from Crohn's, there is much overlap in symptoms. Prometheus and other IBD serologies are far from infallible, and no medical authority recommends using them as the primary tool of diagnosis. Plus, features associated with Crohn's can occur in UC, and vice versa. About a third of Crohn's cases are confined to the colon with no small bowel involvement. Sometimes it is only time that is the difference between a presumed diagnosis and a later discovery of Crohn's; not truely a conversion. But, there is evidence that surgery can stimulate Crohn's activity. They used to say also, that Crohn's tended to recur "upstream" from the site of resection, but I don't know if that is the current belief.
Bottom line, both UC and Crohn's are in the same family of diseases, and anyone with a UC diagnosis could possibly actually have Crohn's that just has not fully manifested yet. You just do the best you can with what you know at the present.
Jan
Bottom line, both UC and Crohn's are in the same family of diseases, and anyone with a UC diagnosis could possibly actually have Crohn's that just has not fully manifested yet. You just do the best you can with what you know at the present.
Jan
Thanks Jan - do you have any link or anything you can point me to where I can read the evidence that surgery can stimulate Chron's? That is very scary! Then maybe surgery is not worth it?
Jan when you say upstream do you mean anywhere higher in the Gi tract or do you mean just above where the anastamosis was?
My son was rediagnosed crohns after his ileorectal anastamosis and it was upstream but far upstream and not right at the connection site. His surgeon did think the stress of the surgery brought it out so to speak.
And for the record he had at least 3 IBD prometheus panels done and all said UC as did his colectomy specimen. We did everything we possibly could do insure a UC diagnosis prior to surgery and it still turned out to be CD in the end. Colon still needed to come out regardless.
And yes, it was a huge blow mentally. How could it not be? The treatment may be the same but had it been UC he would have been cured with the colectomy. That went out the window.
My son was rediagnosed crohns after his ileorectal anastamosis and it was upstream but far upstream and not right at the connection site. His surgeon did think the stress of the surgery brought it out so to speak.
And for the record he had at least 3 IBD prometheus panels done and all said UC as did his colectomy specimen. We did everything we possibly could do insure a UC diagnosis prior to surgery and it still turned out to be CD in the end. Colon still needed to come out regardless.
And yes, it was a huge blow mentally. How could it not be? The treatment may be the same but had it been UC he would have been cured with the colectomy. That went out the window.
I mean immediately adjacent to wherever the resection would be, so that would be the j-pouch and/or the diverting ileostomy. But I think that notion has mostly been discarded. But the stress of surgery in general can be a trigger for a flare, I think.
Here is a link to an abstract explaining, but it mostly states that the disease type remains regardless of the surgery. You can follow the links to related articles to learn more.
http://www.ncbi.nlm.nih.gov/pubmed/21115545
The thing with IBD, is that it is highlighted by relapse and remission, and a random course. I think they used to think they were pretty good at diagnosing, but the more they learn, the more they realize how complex IBD is.
Even with a certainty of UC, colectomy maynot bethe end of the story, as I am one who wound up with a diagnosis of enteropathic arthritis a decade post op, and am on medications I thought I never would have to consider.
Jan
Here is a link to an abstract explaining, but it mostly states that the disease type remains regardless of the surgery. You can follow the links to related articles to learn more.
http://www.ncbi.nlm.nih.gov/pubmed/21115545
The thing with IBD, is that it is highlighted by relapse and remission, and a random course. I think they used to think they were pretty good at diagnosing, but the more they learn, the more they realize how complex IBD is.
Even with a certainty of UC, colectomy maynot bethe end of the story, as I am one who wound up with a diagnosis of enteropathic arthritis a decade post op, and am on medications I thought I never would have to consider.
Jan
My first guess is it was misdiagnosed, since that seems to be quite common to begin with.
Thanks for the link Jan but I was hoping for something that more explains how UC could change or transform into Chron's directly as a result of the Jpouch surgery. If that was possible or likely, it would cause signficant reason for concern.
quote:do you think that you somehow developed Chron's after the J-pouch surgery?
I am a candidate to be called someone who developed Crohn's Disease after surgery since in the last 5 years inflammation has been increasing in my neoterminal ileum after none existed for 15 years after surgery. Whether that might be due to chronic antibiotic use for 17 years to treat pouchitis is unknown. What I can tell you is that the disease is different than Ulcerative Colitis so I do not believe I was misdiagnosed. I never had any inflammation in the neoterminal ileum until about 5 years ago. It was fine for many years after J Pouch surgery. In my mind it is another manifestation of autoimmune disorder just as UC was. Note that many people on this board developed other autoimmune disorders like AS. The basic issue is that we all have messed up immune systems and how that defect manifests over the course of time is what is confusing.
I think the misdiagnosis theory is dangerous because it may assume, incorrectly, the existence of one manifestation of autoimmune disorder when there may be more than one. I am very certain that I have possibly had as many as 3, the ulcerative colitis, the pouchitis, and now the inflammation in the ileum. And the symptoms were definitely different between the pouchitis and the UC so I believe that they are different diseases.
My understanding is that these cases are indeed a misdiagnosis. Yes, there are definitely different forms of IBD, with UC and Crohn's being the primary types. Within those types, there are subtypes that they are beginning to figure out. The belief is that the various subtypes have a "built-in" response, or lack of one, to the various treatments, explaining why there is so much variability in the response to treatment.
There is a trend in the belief that at least some types of pouchitis may be a novel type of IBD, but Crohn's of the pouch is still Crohn's disease. The idea of the novel IBD subtype of pouchitis comes from the theory that altering the ileum to be a fecal reservoir invites a new inflammatory target, because as the pouch adapts, the mucosa changes on a cellular level to resemble rectal mucosa. But, chronic pouchitis does not occur in everyone with IBD. It is most common in those with an indeterminate diagnosis and Crohn's colitis. Pouchitis is very uncommon in FAP or other non-IBD diagnoses leading to colectomy.
But, back to the initial misdiagnosis idea. Just because you never had any evidence of small bowel inflammation, it does not mean that an original diagnosis of UC was correct. Once there is good evidence of Crohn's, that actually was the real diagnosis all along. The difference is that it just had not fully manifested previously. Crohn's colitis is still Crohn's, and not cured by colectomy. There are theories that colectomy in Crohn's colitis just removes the target du jour, and the disease then moves on to something else.
So, to summarize, the diagnosis may change, but your genetic make-up has been the same since your birth (or maybe even conception, assuming no mutations during fetal growth). IBD is a disease that takes years, decades, or more to develop, and how, and if, it manifests depends on your particular environmental triggers.
Jan
There is a trend in the belief that at least some types of pouchitis may be a novel type of IBD, but Crohn's of the pouch is still Crohn's disease. The idea of the novel IBD subtype of pouchitis comes from the theory that altering the ileum to be a fecal reservoir invites a new inflammatory target, because as the pouch adapts, the mucosa changes on a cellular level to resemble rectal mucosa. But, chronic pouchitis does not occur in everyone with IBD. It is most common in those with an indeterminate diagnosis and Crohn's colitis. Pouchitis is very uncommon in FAP or other non-IBD diagnoses leading to colectomy.
But, back to the initial misdiagnosis idea. Just because you never had any evidence of small bowel inflammation, it does not mean that an original diagnosis of UC was correct. Once there is good evidence of Crohn's, that actually was the real diagnosis all along. The difference is that it just had not fully manifested previously. Crohn's colitis is still Crohn's, and not cured by colectomy. There are theories that colectomy in Crohn's colitis just removes the target du jour, and the disease then moves on to something else.
So, to summarize, the diagnosis may change, but your genetic make-up has been the same since your birth (or maybe even conception, assuming no mutations during fetal growth). IBD is a disease that takes years, decades, or more to develop, and how, and if, it manifests depends on your particular environmental triggers.
Jan
I finally found the link to the Cleveland Clinic article about Crohn's of the ileal pouch. It explains what I was trying to describe about the various types of IBD very well.
http://onlinelibrary.wiley.com...0.1002/ibd.20661/pdf
Jan
http://onlinelibrary.wiley.com...0.1002/ibd.20661/pdf
Jan
I am having issues now with my pouch the last biopsy i had showed ideopathic IBD the inflamation was around the inlet and mid-line of the pouch, around the anus was just chronic inflamation. Two months ago the biopsy at mid-line showed a small granuloma and as I have a fistula I was told it is probably now crohns we are trying a course of prednesone to see if this will determine the cause of a stricture at the inlet is scar tissue or inflamation. We tryed methotrexate with no help there. One surgeon has said he recommends to divert the pouch with an ostomy leaving the pouch intact I don't like the idea at all at this point and if it comes to that the idea of leaving a source of infection for the future does not set well with me. I am having a great deal of indigestion and take sulcrate,nexium and zantac I wonder if there is inflamation in my stomach as well. I believe that Jan is correct in that there are other IBD's out there that they are just finding as well the fact that your small bowel was never ment to funtion as a rectum. Shawne
The finding of the granuloma is pretty much the one thing that occurs only in Crohn's and not in UC. I think an upper endoscopy is probably in order, not so much for diagnostics, but to make sure you are on the right treatment for your stomach.
Hopefully, if you get on the right treatment for Crohn's, your upper GI symptoms will abate. Since the methotrexate was not useful, and you have a fistula, the next step seems to be biologics for you. You can't stay on prednisone indefinitely. Even if you decide to defunction or remove your pouch, you should consider maintenance treatment.
Jan
P.S. I had a dead link above before, but I fixed that, so you should be able to view the PDF article now.
Hopefully, if you get on the right treatment for Crohn's, your upper GI symptoms will abate. Since the methotrexate was not useful, and you have a fistula, the next step seems to be biologics for you. You can't stay on prednisone indefinitely. Even if you decide to defunction or remove your pouch, you should consider maintenance treatment.
Jan
P.S. I had a dead link above before, but I fixed that, so you should be able to view the PDF article now.
I am now a Crohnnie after first being diagnosed with UC. In my case, I had a feeling I had Crohn's all along as my UC never was "traditional". My UC was worst in the end closest to the ileum. I also had stricturing in the colon. I did have conituous inflammation, no granulomas, no fistulas, etc. I had the prometheous test, 2 camera capsule endoscopies, traditional endoscopy. Basically, you name it I had the test before surgery.
Since surgery I've had chronic pouchitis, recurrent flares of cuffitis, 3-4 abscesses, and a fistula. I've always had the extraintestinal manifestations too.
My opinion on the matter is that IBD runs on a continium, and many of us fall somewhere in between. There is still much we need to learn.
Since surgery I've had chronic pouchitis, recurrent flares of cuffitis, 3-4 abscesses, and a fistula. I've always had the extraintestinal manifestations too.
My opinion on the matter is that IBD runs on a continium, and many of us fall somewhere in between. There is still much we need to learn.
I went through the whole Crohns/UC dilemma here recently myself. Initially diagnosed with
UC then changed to Crohns Colitis then changed to Indeterminate Colitis and now back again
to UC. My surgeon has flat out said it looks like UC but that is really no guarantee. I'm
going to give the J Pouch a try and we'll see how this works out. Personally I'd rather
try this than having a permanent ileostomy and never really knowing for sure if a J Pouch
could have been an option.
UC then changed to Crohns Colitis then changed to Indeterminate Colitis and now back again
to UC. My surgeon has flat out said it looks like UC but that is really no guarantee. I'm
going to give the J Pouch a try and we'll see how this works out. Personally I'd rather
try this than having a permanent ileostomy and never really knowing for sure if a J Pouch
could have been an option.
Karbear,
So sorry to hear that! That is one of my worst fears right now. I too have had a couple things with my UC that are untraditional. An RV fistula and stricturing in the sigmoid colon. But the gastro and surgeon are pretty confident that it is UC. It did start as Ulcerative proctitis and then seemed to spread up the left side of the colon, and I only had a pancolitis flare once. Now when I did have the RV fistula, it was a very bad flare, and I was doing a gym program and the trainer had us on lots of supplements and lots of "green" foods to "cleanse" our bodies. I think it was a big mistake for me. I informed them of my UC and said that I don't usually tolerate a "lot" of high fiber foods, but one of the trainers that helped him run the program has Crohn's though and had done great since being on the supplements/program...in fact he swore by the diet/supplement and said he'd done better than ever so I tried it. Well every girl I talked to on the program all had burning diarrhea and with UC, I got into a horrible flare quickly and within 3 weeks ended up with it coming out where it shouldn't have!!! That freaked me out, and was so painful...the burning....ouch! So I ended up back on prednisone. So I think that the fistula was caused by that and maybe not the possibility of Crohn's. And the stricture, well that was in the part of my colon that always got damaged the worst during my many flares. Once I started remicade and got into remission I noticed a narrowing of the stool that kept getting more significant to the point where it was painful when stuff was going through there and then the inflammation started again. They dilated twice and it wouldn't stay open. So I just had step 1 of 2 of the J pouch surgeries on June 8th. Doing great, but I am so worried about having pouchitis or other pouch problems and finding out later that I did have Crohn's... So what are they going to do - treat you with meds for Crohn's or are you going to reverse to a permanant end ileostomy? What are the symptoms of pouchitis/cuffitis? These are things I worry about. I am a worrier! Good luck to you and keep us posted on your progress. Stay strong!
So sorry to hear that! That is one of my worst fears right now. I too have had a couple things with my UC that are untraditional. An RV fistula and stricturing in the sigmoid colon. But the gastro and surgeon are pretty confident that it is UC. It did start as Ulcerative proctitis and then seemed to spread up the left side of the colon, and I only had a pancolitis flare once. Now when I did have the RV fistula, it was a very bad flare, and I was doing a gym program and the trainer had us on lots of supplements and lots of "green" foods to "cleanse" our bodies. I think it was a big mistake for me. I informed them of my UC and said that I don't usually tolerate a "lot" of high fiber foods, but one of the trainers that helped him run the program has Crohn's though and had done great since being on the supplements/program...in fact he swore by the diet/supplement and said he'd done better than ever so I tried it. Well every girl I talked to on the program all had burning diarrhea and with UC, I got into a horrible flare quickly and within 3 weeks ended up with it coming out where it shouldn't have!!! That freaked me out, and was so painful...the burning....ouch! So I ended up back on prednisone. So I think that the fistula was caused by that and maybe not the possibility of Crohn's. And the stricture, well that was in the part of my colon that always got damaged the worst during my many flares. Once I started remicade and got into remission I noticed a narrowing of the stool that kept getting more significant to the point where it was painful when stuff was going through there and then the inflammation started again. They dilated twice and it wouldn't stay open. So I just had step 1 of 2 of the J pouch surgeries on June 8th. Doing great, but I am so worried about having pouchitis or other pouch problems and finding out later that I did have Crohn's... So what are they going to do - treat you with meds for Crohn's or are you going to reverse to a permanant end ileostomy? What are the symptoms of pouchitis/cuffitis? These are things I worry about. I am a worrier! Good luck to you and keep us posted on your progress. Stay strong!
I too Have the diadnosis of chrohns/colitis they are not sure. I had my stoma for 8yrs after deciding tigo through with the jpouch. I was trying to concieve using help with an infertility specialist. After I used My last embryo and It failed too, my heart was crushed. Truly I think if the pegnancy did occur I would have never thought about the jpouch surgery.It sure has kicked me in the butt, this surgery! The healing has been really tough. I recently had a pouchoscopy and she said everything loooked great. She also did several biopsys on the rectal cuff because it has been burning like crazy inside and out. Well my biopsy showed no disease at all She did however see some redness and swelling in the area and put me on Flagyl and Cipro. The Cipro did not agree with me at all I am now on Xifaxan only. I started it yesterday 12/7. I was reading up on it and it said after 24 hrs of taking it and there is no difference to stop it. Well I am not seeing any difference at all! What could it be now? This surgery started back in June and I still feel like crap! What the heck is going on any suggestions! I thought by having this done I would have my life back and be happy, but thats not the case!!
She did however see some redness and swelling in the area and put me on Flagyl and Cipro. The Cipro did not agree with me at all I am now on Xifaxan only. I started it yesterday 12/7. I was reading up on it and it said after 24 hrs of taking it and there is no difference to stop it. Well I am not seeing any difference at all! What could it be now? This surgery started back in June and I still feel like crap! What the heck is going on any suggestions! I thought by having this done I would have my life back and be happy, but thats not the case!!
The instruction to stop Xifaxan if you don't get a response in 24 hours is almost certainly for its use in traveler's diarrhea. I don't believe it applies to you. I'd give it a few days to a week, and talk to your doctor before stopping it (assuming your only problem is that is doesn't seem to be working).