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ileo rectal anastomosis crohn's low grade dysplasia

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Posted 4/27/2013 3:50 PM (GMT 0)

Hi,

 

I’m new to this forum and glad to have found it and hope I have posted in the right palce.

 

Here is the back story. Male 66 years old with 11 year old daughter.  Diagnosed with Crohn’s in 1989, a couple of rough years but docs got it under control with meds and actually went into remission for many years.  Colonoscopy in 2008 showed disease was back but mild and I had no symptoms, back on asacol.

 

Coloscopy 2/11 one area low grad dysplasia  surgery was discussed but decided on frequent surveillance. Symptom free

 

Colonoscopy 5/11 all biopsies negative, symptom free

 

Colonoscopy 10/11 all biopsies negative, symptom free

 

Colonoscopy 4/12 all biopsies negative, symptom free

 

Colonoscopy 11/12  one area low grade dysplasia in different location that first one, symptom free

 

Colonoscopy 3/13 all biopsies negative,  symptom free

 

Three Gi’s have recommended colectomy.  I have seen two colorectal surgeons for consults Dr Vincent Obias at GW hospital and Dr Jonathon Efron and Johns Hopkins.  Both have suggested ileo rectal anastomosis  as my rectum appears to be spared.  But Dr Efron said given my situation with the last colonscopy being clear I might visit the Cleveland clinic for one more opinion.  I mentioned all the studies that show low grade dysplasia will progress to cancer and there is a 20 percent chance I have cancer now.  He said he has never removed a colon that had low grade dysplasia that showed caner after removal. 

 

I guess what I’m asking is this.  Anyone continue with frequent surveillance after two indications of low grade dysplasia.  And whatever anyone can share about the outcome of the ileo rectal anastomosis  procedure would be appreciated.  It is hard to be feeling absolutely fine and walk into surgery with the results being in doubt.  I’m thinking if I have surgery it would be mid june since I teach and have the summer off to recover. Thanks in advance

 

Posted 4/28/2013 8:23 PM (GMT 0)
I don't have the same issues, but it looks like you're in the DC area? If you want another opinion without the travel to CC, try Fairfax Colorectal surgeons. They are excellent, and my surgeon trained at CC Florida. You can see the profiles of their docs on their website, and you can get an appt there much faster than at CC.
Posted 4/28/2013 8:36 PM (GMT 0)

Thanks for the reply.  It sounds like you had UC since you are having a J pouch.  I hope it goes well,  in general folks seem to have better luck with the J pouches than the ileo rectal process. I have an appointment with Lynda Dougherty on May 15.  She has CC experience as well.  Is this the surgeon you used at Fairfax CR?  I still may go to CC just to have explored all avenues for feed back before I walk my feeling absolutely fine self into a hospital to have my colon removed.

Posted 4/28/2013 9:31 PM (GMT 0)
Hello photoart,

My case history didn't involve dysplasia, although with every coloscopy - and there were 4 in the year before my colectomy - my GI reminded me he might find some, at which point he would have strongly recommended the colectomy (which I had to have anyway for other reasons).
Two things I can say regarding your feeling fine self, in case you are wondering about going through surgery when you're feeling fine:

-You are ruling out that first malignant cell that could develop in your colon. No doctor will be able to tell you accurately what the chances are that you will have cancer now or later. And you will never again have to walk around with that "I may have cancer right now" feeling.

-You have the total luxury of planning the surgery with all the summer in front of you for recovery and relaxation before the semester begins. Never underestimate the absence of stress and pressure after surgery.
I had a stenosis that was about to shut down the works, and was told I shouldn't wait longer than three weeks. I had just dreamily told my doctor it would be more convenient if I could do it in six months.

Have they ruled out the possibility of a jpouch? Some Crohns patients seem to be candidates, but I don't know what that's based on.
Posted 4/28/2013 9:40 PM (GMT 0)
I had Kim Matzie, but Dr. Dougherty saw me on rounds one day and was awesome! Good luck!
Posted 4/29/2013 4:01 AM (GMT 0)
Photoart,

Welcome! Although meeting people under some of these circumstances is not always such a pleasure :)

Well, as someone with a j-pouch.. I LOVE it!!!! I have had a couple of issues, but nothing that can't be handled fairly easily.

I had to have mine done due to a mega colon that just stopped working, basically. SOOOOO, that being said, I second what was said above about getting it done while you are off for summer..as it will make your life much better if you get to chose when/where/how all is done without the added pressure of doing it emergency style, and under chaotic conditions..

It will give you time to put all your ducks in a row, as far as care for post op, and not having to worry about your students and stuff on top of it all. My only words of caution would be this: DO IT AS EARLY IN SUMMER AS POSSIBLE.. that way if you DO have any complications, you still have all summer to recover and not have to feel rushed to go back to the classroom before you are truly ready.

Now, some things I wish I had known prior to surgery: (Don't take this the wrong way, but a heads up would be great).. After surgery, sit to urinate. I say this, because even tho the rectum isn't really involved directly in the whole thing, I leaked out the bottom when urinating and didn't even realize it until I wiped! (Isn't it amazing the things we are willing to tell complete strangers!?!?!) But seriously, I would just suggest sitting to pee for a bit after, I am lucky in being a female, but I can't imagine being a man and having something unexpected trickle out the bottom.. Even my surgeon didn't mention that it may happen.. shocked me! lol...

Anyway, I can see your reluctance to have surgery when you "feel fine".. especially if you have always been a "If it ain't broke, don't try to fix it" kind of person.. But perhaps you should think of it as preventative maintainence instead.
Either way, you will know what to do when the time comes...

~Hope all goes well, please feel free to ask any other questions :)
Posted 4/29/2013 4:36 AM (GMT 0)
I would say this is a difficult call, really it is a dice roll. No symptoms and off and on low grade dysplaysia and just on Asocol. I probably wouldn't do it excepting for the fact you have a young child, that would be a big consideration for me.

I had cancer but my children are/were grown, the treatment sucks. I am not familiar with the odds on Chrons turning to cancer but with UC it increases with the years you have it. I had UC decently controlled 25 years never any displaysia show and that is the kicker you can miss areas with biopsies, as I think they did with me. So the colonoscopy is an imperfect tool. That said I think GIs cover their asses with a recommendation of surgery at the first sign of displaysia. I dont know about the Ileo rectal I had a J pouch that didnt work out. You could always go to an end ileo if your worried about outcomes of surgery.
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