j pouch and crohn's

Yeah, typically, j-pouch is not appropriate with a Crohn's diagnosis, but for a few select cases some surgeons will do it. Mostly it is for those with Crohn's colitis, no evidence of any small bowel disease, and no perianal disease.

But, you are correct that Crohn's colitis with rectal sparing is an indication for an ileorectal anastomosis (IRA). There is no pouch creation, but the functional outcome is very similar to an ileal pouch. This is because the ileal pouch takes the place of the rectum. But, there is a 30% risk of reoperation or failure. Here is a link to an outcome study.
http://www.ncbi.nlm.nih.gov/pubmed/21979177

Can't help you with the surgeons though. Good luck sorting it out.

Jan

I bet we see more people asking this question, and more doctors doing j-pouches in these cases. Generally it's not recommended if Crohns is the diagnosis. BUT there are some doctors who will give it a try if the Crohns is isolated to the large bowel and have completely healthy small bowel. The thinking is that if the Crohns reappears later on the drugs can beat it back and a pouch removal won't be necessary. I was diagnosed in 1986 and their are so many more good drugs now than back then, and more and more are on the way so I it seems reasonable to assume the j-pouch may be more common in the years to come. Right now, it's not generally done but it is a very interesting topic of conversation. Mostly because there have been people with Crohns Colitis that were originally diagnosed with UC (like me) and had a j-pouch made. Some of these people are able to keep their j-pouch because the disease is in remission. I had 25 years of remission and no meds before finding out I have Crohns and not UC. So anything is possible. For now though, my feeling is if you have Crohns Colitis and the doctor is offering you the j-pouch I would stay away. It's just more stuff that can go wrong. But that's me saying this at 45 years old. Not at all what I would have said back when I was 19 and had the j-pouch. That's the problem and source of debate that's going on right now. I guess the moral is, do what you feel is best for you- there is no wrong answer to that and either way, it's better than having a sick colon that needs to come out.

Hi Bluebird,

I was originally diagnosed with UC and had my colon removed with J-pouch in 1992. Some years later I was diagnosed with Crohns and had further oeprations to remove more small intestines. I did have to have my J-pouch repaired but I am doing well now. My surgeon said there are quite a few individuals like me that were orginally diagnosed with UC but now have Crohns.

I can't speak for the other people like me who have Crohns and a J-pouch but I am glad I got the J-pouch. I felt so much better after I got my colon removed.

KanagaRoe

I forgot about my surgeons. I was originally operated on by Dr. Gelernt at Mount Sinai who was the best. Dr. Gelernt was a great man and surgeon but he has since passed away.

My surgeon is now Dr. Gorfine of the same practice of Manhattan Surgical Associates. In my opinion he has become just as good as Dr. Gelernt. He also operates at Mount Sinai.

Please feel free to PM me.

KangaRoe

Hi Bluebird, I have inactive UC but very similar history of low grade dysplasia. Most recent colonoscopy has the drs recommending the same procedure as my rectum looks so healthy. They are actually amazed at how good my whole colon looks, just on cellular level it is a different story. I am in decision mode as well. But I am in CA. I wish you well on your decision. I will be taking a copy of the study Jan provided to my dr to have them comment. If you don't mind let me know what you decide. Thanks.

Hi PH and BlueBird

I am in a similiar situation (UC, low grade dysplasia), surprisingly I have also been offered the same procedure (rectum looks healthy).

Did your dysplasia show up on random biopsies?? Did they follow up with Chromoendoscopy??

I actually had a adenomatous polyp (totally removed) which prompted chromo-endoscopy. Then they found an area of low grade dysplasia using the chromo.

So far no random biopsies have turned up with dysplasia. Just the polyp, and one targeted biopsy.

Hi Durk! Wow, I thought my situation was so unusual that I would find people who could comment on it. 2011 I had the adenomatpusnflat poly removed that had
Ow grade dysplasia, 2012 clean colonosocpy, 2013 low grade dysplasia in the lining this time...so that it making a big difference. I did not have a chromoendocopy nor was it even offered.

What is that and why did they us it on you?

Are you considering the surgery? And if you don't mind me asking where are you treating?

Hi PH

Chromoendoscopy is where they put a dye into the colon to better visualize it. They are thinking now that most dysplasia in UC is visible. The dye makes the edges of the lesion show up so they can find it and perhaps remove it by an endoscopic resection. Do a google search on it and you will find lots of information. It should be available in many places in the U.S.

So my situation is that after I had the first polyp they wanted to get a better look in case there were more so they did chromoendoscopy, which was clean. Then they did it again 6 months later. This time they found a visible lesion with low grade dysplasia.

I am considering the surgery of course. But I am going to get another colonoscopy to get more information.

This is a rapidly developing field. They are getting much better at finding dysplasia (through chromoendoscopy, confocal endoscopy) and removing flat lesions with endoscopy (endoscopic mucosal resection, EMR).

The doctors have emphasized to me that surgery is the safest option. But there are now endoscopic options you can look at first (if you can tolerate a bit more risk).

If you search google for "Peter Higgins, dysplasia power point" it comes up with a very good power point presentation that outlines recent developments in treating dysplasia.

Thanks for the info Durk! I just got back from the dr and their pathologist does NOT think it is low grade dysplasia but tubular adenomas. But it did not present itself visually as an adenoma, it looked like an adenoma on a cellular level.

They were initially on the fence about surgery at the beginning of the appt but by the end felt it should be done. But they said...this is a very gray area and that I should think about it.

I am grateful that it is not something more serious but clarity sure would be nice at this point. Thanks for the info. Still don't know which way I will go.

Let me know what you decide.

PH

Wow. That is my situation exactly. My pathology came back as a "polypoid segment/features resemble tubular adenoma"

This is such a confusing area. I've read everything I can about this. But I don't know if there is a difference between plain old low grade dysplasia. And dysplasia that resembles tubular adenoma.

The decision is very tough as I have hardly any symptoms. If I started having symptoms I'd be in there for surgery as soon as possible.

Durk,

Your situation is very similar to mine. I had a routine colonoscopy after 25 years with relatively chronic, but medication controlled UC, that came back with one area of LGD. I was recommended for surgery. I researched and found an excellent colorectal surgeon as I did not feel the surgeon my GI recommended had enough experience with jpouch surgery. The surgeon scoped me again in 6 months and no LGD findings. He offered to follow me but if LGD was found again, the agreement was surgery was in order.

I had a couple more scopes (one was a chromoendoscopy) and both came back clean. On my third and final scope (chromoendoscopy also), the surgeon took 60 biopsies. He saw nothing visible in the scope. The results came back with LGD with polypoid segment similar to your description. My surgeon told me it was time for the surgery. We sent the slide out to my surgeon's guru pathologist at the University of Michigan who agreed on the diagnosis. He said it was an incredibly small showing of LGD. Still, they both recommended surgery.

I was in a different situation that you in that my colitis was active for at least 6 months prior to surgery and I was on high doses of steriods that were not working the way they had in the past. Also, all my SSO's for the original LGD finding came up as indefinite for dysplasia so it was a very trying time for me deciding whether to have the surgery or not.

I had second opinions on the original LGD scope before moving to the colorectal surgeon to follow me. The SSO came back as indefinite for dysplasia. The original pathologist who first noted the LGD fought the other pathologists on their 'indefinite' diagnosis. She did not agree with following with more scopes as she indicated it would be virtually impossible to ever replicate the LGD finding again no matter how many more biopsies were taken. The pathologist at University of Michigan commented on what a thorough scope my surgeon did (final scope) with the 60 biopsies (32 or so in the norm).

After much thought and putting all my trust in my surgeon (as he followed me for three years and always told me you do not want to have this surgery unless you absolutely have to), I agreed to the surgery.

When the residents came in to my hospital room about four days after my first step jpouch surgery and told me my final pathology on the colectomy came back as 'indefinite' for dysplasia,I cried. I remember how rough the first week of surgery was, but nothing compared to that wait to get my biopsy results as I recall my surgeon telling me after the last LGD finding 'it is time... you could have a cancer going on now'. It was odd my surgeon made that statement because on the prior scope path finding that came back clean, he told me ' you still don't believe me do you that you have no cancer?'. I honesty believe he knew I had no cancer even on my final scope where the LGD showed again, but he was concerned about my health not improving and the possiblity of this eventually turning into cancer so that is why he made that final comment. He knew I was on high doses of steriods and was not improving and I was miserable also. He also knew I had a family history of colon cancer and 25 years of chronic universal UC. I think he made the right suggestion at the right time.

Only you can make the choice which I am sure is tough being that you are feeling well. For me, any indication of polypoid makes me nervous. I am not sure how long you are waiting between scopes and how much risk you are willing to take. As trying as my last two years have been adjusting to my jpouch (I never had as many issues with UC), I am finally turning the corner and I am still glad I had the surgery when I did.

I wish you the best with your decision. As you can see, I struggled for three years before finally agreeing to it. I feel I may have been one of the luckier ones who gambled and ended out on top.

Hi Jeane

Thank you for the detailed summary. It is very helpful to hear what others went through.

It's a complicated decision. But if I had to take steroids again (haven't used them in 8 years) I would just sign up for the surgery instead.

It's a difficult time to be going through this because with chromo they are now finding areas of dysplasia that they didn't before. But they don't yet have follow up studies to show the course of these smaller areas of dysplasia.

The main concern about these flat low grade dysplastic lesions is that cancer associated with UC does not necessarily progress from low grade to high grade to cancer. You can have low grade dysplasia in one spot and a few months later cancer crops up in a completely different spot, no warning. So, once they see dysplasia, especially high grade, they get very nervous. Maybe with the chromo they will be better at spotting stuff earlier, but I doubt it will mean less colectomies. It will just mean less guesswork.
http://www.uptodate.com/conten...matory-bowel-disease

Jan

Hey Bluebird, I actually just had surgery by Dr. Efron 3 weeks ago yesterday. He removed my J pouch and gave me the "Barbie butt", I already had the ostomy for the last couple years. I loved him, very nice and the staff was great too. His associate Dr. Mayo is very nice too. I was in the hospital about 5 days and came home, no post op complications. I went back to work last week b/c I was going stir crazy--my job is not a physically demanding job. My hospital stay was uneventful and Hopkins pain management was top notch. I had my follow with Dr. Efron today and he was pleased. He and his staff are very easy to talk to and ask questions--he doesn't make you feel like he's in a hurry or you are wasting his time. Can't say enough good things about my experience with him or Hopkins. Just my 2 cents worth.
PS: He didn't do my original J pouch, that was another doc at Hopkins but unfortunately I was diagnosed w/UC originally and it later manifested as Crohns, thats why I ended up w/ostomy.

Hi Bluebird!
I had my colon removed and jpouch created in Dec. 2011 due to UC for 18yrs and colonoscopy findings of low grade dysplasia. After a recent pouchoscopy I've now been dx'd with Crohn's disease...not what I wanted to hear for sure! However, my gastroenterologist is starting me on Humira and feels that I will do fine with the jpouch. No guarantees, but I will take what I can get for as long as I can get it! Good luck!

First thanks to all of you who have replied to my original post. I learned a lot and all the information has helped me get closer to a decision about surgery. I want to try to answer a few of the questions that were asked in the replies. All of my scopes were with the chromo dye except the first one where the dysplasia was found. My understanding is that the dye gives them a better idea where to take samplse. The dysplasia in both cases were it was found was found with random biopsies.

Here is an update on where I am now. I actually had another colonoscopy with dye since my first post. I did this to make sure nothing horrible was going on as I am waiting until early summer to have surgery since I don’t work in the summer, teacher. Well wouldn’t you know it all the biopsies were negative, no dysplasia just mild Crohn’s. At first I thought well I’ll just keep having scope every 6 months but I think I’ve played with fire long enough. I have a 10 year daughter so I need to be around as long as I can.

I also met with the first surgeon I mentioned Dr Vincent Obias at George Washington hospital. He suggested the IRA procedure over the bag. He thought the 30 % rate of failure was high and seemed confident I was good candidate for it. He said typically you have 3-5 BM per day. On April 24 I will see Jonathon Efron at Johns Hopkins and the perhaps a third surgeon before making a final call. I’m pretty committed to surgery at this point, probably in mid June, I guess now it is a matter of deciding between the IRA and the bag. Part of what I’m considering is my age and not wanting to end of with multiple surgeries to get things right.

Hi Bluebird, thank you for your update as I am in almost the same boat as you. I do not have Crohn, but inactive UC. findings of low grade dysplasia. Nor have any of my drs done this chromendoscopy. My Dr. Beart and Dr. Ng both recommended the IR. Dr. B did not feel the fail rate as 30%. I am trying to decide as well. And I may ask them to do the chromendoscopy first. Thanks for keeping us updated. Best of luck to you! I admire your courage!

Pam
How did your doctor definitively diagnose you with Crohn's? I am wondering as I have a scope next week for chronic pouchitis. I have difficulty functioning off antibiotics.

quote:

How did your doctor definitively diagnose you with Crohn's?

I am also wondering how Crohn's was definitively diagnosed on a scope. My GI told me, back in 2008, that there are 3 diagnostic methods used to confirm a Crohn's diagnosis. These are his words:

1. Camera Endoscopy - "Gold Standard"
2. CT/MRI Enterography - "Silver Standard"
3. Prometheus Blood Test reviewed by competent pathologist - "Bronze Standard"

The typical pouchoscopy which peeks up into the neoterminal ileum does not make the medal stand. It just raises a suspicion leading to the further testing noted above, 3 of which I have had (all but the Camera Endoscopy which I rejected). And I still have no confirmation. I question whether "confirmation" is even possible in some cases. In my case, it has been rejected for many reasons despite some inflammation in the ileum above my pouch.

Jeane and CTBarrister,
My doctor made the Crohn's determination via pouchoscopy with biopsy and MRI/MRE.I have talked at length with her about the possibility of the inflammation being pouchitis and UC in the cuff. She is confident in the Crohn's dx. In her opinion the presence of inflammation into the ileum is clear evidence of Crohn's. She comes highly recommended by my surgeon and other excellent medical professionals I know, and has a high volume of jpouch patients so I'm inclined to trust her judgment. It's so hard to know what to do in a situation like this when the diseases look pathologically so similar. It's my impression that the determination of Crohn's is based largely on the behavior of the disease and where the inflammation is found.