I would absolutely get a second opinion. My childhood GI was with Mass General, it is a top notch facility. Some people have smooth sailing after a total colectomy but others (myself included) do not. I cannot imagine having that surgery as a precautionary measure but I may just be biased.

I did find a similar post from 2013 that mentioned a finding of a small area of indefinite displasia in a colonoscopy. I will specifically ask if any of my biopsies or removed polyps had this. It could explain why my GI is being so cautious. I will definitely be looking to Mass General for any second opinion.

The risk of colon cancer for folks with UC goes up with time (overall 8% at 20 years of disease, 18% - nearly one in five - at 30 years). Once you add dysplasia and new polyps to the mix the risk increases. Colon cancer is a pretty nasty disease, so the recommendations for colectomy get more enthusiastic as the risks increase. You get to decide, of course, and it's your doctor's job to give you a decent estimate of the risk. As you point out, it's hard to wrap your mind around a colectomy to *prevent* a problem, and it's a lot to go through when you're feeling basically fine. OTOH, most folks with J-pouches do much better than the difficult situations that lead people to seek support here. 

 

Good luck - I know it's a difficult decision.

I had moderate U.C. for about 20 years when advised to go for the surgery. Dysplasia turned up several times in my yearly colonoscopies. As I recall, the first couple of times having dysplasia, it was mild. Over the next couple of years, benign polyps appeared along with more severe dysplasia. Finally, the quality of the polyps and the degree of dysplasia indicated that down the road cancer would appear. My doctor took a course of watchful waiting until he could wait no longer and I trusted and do trust him 100%. There may actually be ratings for dysplasia indicating severity that might indicate urgency or non-urgency in your situation.

Rose

I had a TPC with j pouch construction in February of this year because of one sessile serrated adenoma at the mouth of my appendix.  Reasonably small at 1cm. It was dysplasia without clean margins. I had a chromoendoscopy that found five other hyperplasia areas, but instead of doing chromoendoscopy every 3 months to 'buy me a couple of years' I went ahead because I am 39 and otherwise healthy.  Ask who read the path and get another opinion if you want but know dysplasia for UC, is a surgery needed at this point in medicine. I had more than 50 other polyps that none of the other endoscopy saw...it was a ticking time bomb in there.  It has not been an easy road especially because my UC was quiescent and I was always well.  So, the mind set I had to get into was that this.was life preserving.  It is.  It has been hard, I won't lie, along nine months so far.  But it is getting better, I am seeing cycles of things I can and can't eat but I will watch my children grow up.  Is it restrictive for me? Food wise yes,socially some but it's improving....would i do it again?  I think so, maybe with the experience I have now. The hardest thing for me to accept was the absolute variability between people in function, and being unable to work for longer then expected.  You really do have to measure improvement in weeks and months, and that was a hard pill for me to swallow. But I think doing it before it becomes Frank cancer, requiring chem, radiation, AND STILL getting a pouch made more sense for me.

Hello,

I truly understand you dilemma. I have been there. I had a total colectomy with take down in 2013. The thing to remember is that you will never be as normal as you are when you have remission, but you will, also, never have to worry about colon cancer. If you like read on for my story. 

I was first diagnosed with UC in 1972. I went over 40 years with mild to severe UC flares. My longest remission was a 9 year stint, though looking back I believe that I had some mild flares during that time.

From 2009 to 2013 I was had active UC with no help from any medications. The only thing that moderately helped was prednisone. My dosage varied from 30 mg a day to 10mg a day. The second I went below 10mg I was in a very active state. My colonoscopies were unremarkable, except for the dysplasia from years of UC. But I knew that one day those results could change my life in ways that I didn't want to imagine.

I simply became sick of being sick. I, also, didn't want to go through the surgery a few years down the road because of cancer and then have to deal with that complication, as well.  I wasn't getting any younger either. I did a lot of online research about the surgery. I found a doc in Philly that consulted with me, suggested my options, and I decided to go for it. My family was my biggest support group. (mucho important). I work in the healthcare which also helped me with my decision, because I understand the language, and knew which questions to ask. 

End result, I do pretty well with the j-pouch, but I did equally well with the ileostomy. I sometimes wonder if I should have just kept the ileostomy, there are pluses and minuses to both, but here I am, no going back. I, also, wonder at times if I should have waited to have the surgery. But really that was not an option for me. All in all, I am happy with the results. I lead a pretty normal life, again normal being a relative term. I travel a lot for work by car and plane, which has its challenges at times, but I manage.

Some one in the forum said that many people do well with the surgery and others not so much, at 2.5 years post op, I guess I fall into the "do well" group, but I have had my days. I have had my tears and fears. I have had my complications, too.

Many people here make some very valid points, but the bottom line is the decision is yours. Talk to your family, talk to your doctor. Find a good colorectal surgeon to consult with. I wish you only well, no matter what way you decide to go.

 

then you have people who never go into remission even with all the drugs given.  Sometimes, the drugs make a person feel worse.  This is what happened to my husband, that and knowing cancer was a big risk drove him to make that decision regarding the surgery.  21 years later, he is healthier and it is wonderful to see.

If you decide to have this surgery, the best time to do so is when you are feeling well.  So, don't wait until you are in a crisis situation.  Your recovery should be much easier.

Head to Mass, General...I am a new patient there in GI and Colorectal and PSC.  I have had a jpouch since 2012 with lots of complications. I received it in Rhode Island.  They did a fantastic job in RI but you just do not know how body is going to react and I think Mass. General's drs. have just seen more and worked with a lot of different cases such as mine.  Since the j pouch (which I always felt like I still had disease UC), gallbladder removed 2015 and found out I have PSC (primary sclerosing cholangitis which is strictures in the bile ducts). The disease just keeps on giving to me.  Do second opinion!

 

All the best and keep us posted -

Roberta

 

 

I am in a similar situation.  I am 43 years old and have had UC for 26 years now, the last 6 of which my symptoms have been well controlled with Remicade and Lialda.  Last year a colonoscopy found a large rectal polyp with high grade dysplasia.  I have had a sigmoidoscopy every 3 months since to monitor the dysplasia but am now scheduled for surgery on November 5th.

I was upset at first but now that I have made the decision to have the surgery it is actually kind of a relief.  My cancer risk will be gone and I will finally be able to get off of the medications.

 

Anyway, I hope things work out well for you whatever you decide to do.

 

Adam

I had the GI consult last week and as expected, he is recommending a total colectomy. I have no dysplasia in my recent biopsies, but he is concerned with the polyps: first that the one from six months ago was rather large (1.5cm) and second that 4 more small ones showed up in six months time. The polyps are all adenomous, but not cancerous. I have a consult with a colorectal surgeon the day before (U.S.) Thanksgiving. I am also having my records sent to the Crohn's and Colitis Center at Mass General Hospital for a second opinion consult, just to help remove my indecision. My GI (at the Lahey Hospital in Burlington, MA) didn't recommend getting the surgery at MGH, but I can't see not taking advantage of one of the top 3 hospitals being local for my 2nd opinion.

 

A coworker got me in touch with a friend of his who had the surgery due to lots of family history with colon cancer (without ever having UC) and he mentioned having his surgery without even getting the J-pouch, just a straight connection of his small intestine to his cuff. He did this to allow for a 1-stage surgery. I assumed that would mean he would have to go to the bathroom even more, but he said he goes 4-5 times/day. Does his story make sense? I was going to ask the surgeon about the 1-stage options anyway, and now I am thinking the 1-stage option is to not get the J-pouch.

Bostonian, I had a one-stage J-pouch surgery about 13 years ago, and it saved me a lot of trouble since I was having it far from home. The initial recovery tends to be tough, and it *doesn't* reduce overall expected hospital days. They are out of fashion now because the complication rate is higher, so I suspect some (many?) surgeons will refuse to do a one-stage procedure without a very good reason.

 

Direct connections tend to work poorly, and are rarely done. Some of them must have worked out okay, and perhaps your coworker is such a case.

Pancreatitis is a side effect of Lialda.  I took Lialda for about 6 months and ended up with Pancreatitis.  All the meds to treat UC have bad side effects.  Best to get a J-pouch when you are healthy. I was not and it was done on an emergency basis (no choice of surgeon at that point).

For what it's worth.... my pouch only interferes with about 5-10% of the "quality" of my life.  I didn't have UC for long, but my 5th and final flare almost killed me.

Bostonian-

I was at the 20 year mark of UC when I had surgery and got the J Pouch. I had biopsies come back positive for dysplasia. Either your polyps are benign and don't have dysplasia or you have dysplasia. The other factor which headed me in a surgical direction was the progression of the inflammation throughout my colon despite that we aggressively treated it. The writing was on the wall. In my view these are the things you should be looking at. Dysplasia or lack thereof and the inflammation now vs. year 1.

It will be 10 years in February, 2016 that I've had my j pouch.  My question then to the my colorectal surgeon was "how long will it last? Will it decrease my life's longevity, and, if so, by how much?"  Her answer: "We just don't know - not enough studies available at this time." 

 

Does anyone have any updated information as to longevity of a j pouch?  My pouch is doing really well; and I am feeling great with limited changes to my everyday life.

 

Thanks.

There is no inherent reason that age should cause a pouch to fail. Stuff can happen over time, of course, but pouches don't "die of old age."

Hi,

 

I got my J-pouch in 2000 in the Mayo clinic, Rochester MN. I was advised to have the colon go because I was using medication for too long (prednison since 1982) and because I had a 30% chance of coloncancer in the next 10 years. I had two stage surgery, with the takedown 5 months later. The first surgery is a big one. I made sure I was as healthy as I could get (including going to the gym every other day for four months, something I hate with a passion). It all worked out very well. I have about 4-5 stools a day and even get to sleep through the night every now and then.

I am quite rational, so the 30% chance of getting coloncancer in the next 10 years was enough to make the decision easy for me. Being from the Netherlands, where J-pouch surgery was still in it's infancy in 2000, I was very happy I could afford to go to the USA to have the surgery done. The second surgery is a walk in the park compared to the first one. Getting the pouch to work is the hard part after takedown. Good luck with your decision.

 

Henk

I struggled with lots of surgeries to finally get my J-pouch "right" at Cleveland Clinic.  I now have a very well-behaved pouch, 4-6 bathroom trips per day, and much more often lately, sleeping through the night. (My takedown was in August.)  I feel super, but don't overlook the "lots of surgeries" part!  If you go for it, I'd be extremely picky, if you can be, for a surgeon with many, many, many J-pouch surgeries under his/her belt!

 

I had terrible colitis from age 16, finally subsided into my 30s with steady dose of Pentasa for many years -- felt so well that I neglected colonoscopies until I turned 40 and lo and behold, nice big cancerous tumor in the colon.  (I had just gotten my Black Belt in Taekwondo -- so it really snuck up on me!)  

 

I know you do not have lots of trouble with colitis, but I can honestly say I've thought about others that suffer and surprised many don't proactively go to J-pouch without cancer, simply to be healthier!  When my colitis was engaged I had a very, very rough time with it.  

 

I wonder if "colon cancer" can be present, but not terribly noticeable, and quietly spread through the lymph nodes?  Or if regular colonoscopies can always catch colon cancer before it spreads or is dangerous -- plenty of time to act, if needed???

 

Best wishes.!

I have been doing the regular colonoscopies the entire 20+ years, so nothing is sneaking up on me.

 

I had my consult with the colorectal surgeon this week and after talking with my GI, they are now planning a subtotal colectomy, rather than a total colectomy with J-pouch. There are less chances of nerve damage since they leave the sigmoid colon, and recovery times sound a whole lot faster. I will have to get flexible sigmoidoscopies at regular intervals since I am keeping some colon, but since he surprised me with one before finalizing the switch to the subtotal, I can see they are nothing like a colonoscopy (no prep!). I am very comfortable with the surgeon, he is a professor at Tufts Medical School, senior colorectal surgeon at Lahey Hospital, and has been doing these operations for 20+ years. I am still getting the second opinion at Mass General Hospital Crohn's and Colitis Center, just to be sure there are no other treatments I need to consider, but I have surgery planned for Feb. 23 at Lahey.