Hello, MissM.  I had ulcerative colitis for decades, although in remission most of the time, and I did not take any medication for UC.  I was diagnosed with colorectal cancer.  My colon was removed, and a j pouch was formed during the same surgery. Takedown was 3 months later. My j pouch functions very well, and I'm very happy with it. Do you have cancer concerns?

The only real cancer concern with the J Pouch is the rectal cuff, which is the one piece of colonic tissue retained with the J Pouch surgery. If you have had either cancer, dysplasia (as I did), or chronic inflammation, you will be scoped annually and the rectal cuff will be biopsied annually. It’s that simple. Although I had dysplasia in my colon when it was removed in 1992, I have had 27 annual scopes and biopsies since then, and they have all been negative for anything other than inflammation.

As far as J Pouch cancers in the J Pouch itself and not the retained rectal cuff, ileal cancers are extremely rare. The Cleveland Clinic did a study on J Pouch cancers around 10 years ago. My then J Pouch specialist was made privy to the results of that study, and what he told me was that virtually all the cases of J Pouch cancers were precipitated by severe uncontrolled or untreated pouchitis, with the cancer usually starting or originating in the rectal cuff.

CTBarrister posted:

The only real cancer concern with the J Pouch is the rectal cuff, which is the one piece of colonic tissue retained with the J Pouch surgery. If you have had either cancer, dysplasia (as I did), or chronic inflammation, you will be scoped annually and the rectal cuff will be biopsied annually. It’s that simple. Although I had dysplasia in my colon when it was removed in 1992, I have had 27 annual scopes and biopsies since then, and they have all been negative for anything other than inflammation.

As far as J Pouch cancers in the J Pouch itself and not the retained rectal cuff, ileal cancers are extremely rare. The Cleveland Clinic did a study on J Pouch cancers around 10 years ago. My then J Pouch specialist was made privy to the results of that study, and what he told me was that virtually all the cases of J Pouch cancers were precipitated by severe uncontrolled or untreated pouchitis, with the cancer usually starting or originating in the rectal cuff.

You seem to know so much... want to come out to Texas to tackle this with me?  Lol. Are you still taking Remicade after your J pouch surgery?

Winterberry posted:

Hello, MissM.  I had ulcerative colitis for decades, although in remission most of the time, and I did not take any medication for UC.  I was diagnosed with colorectal cancer.  My colon was removed, and a j pouch was formed during the same surgery. Takedown was 3 months later. My j pouch functions very well, and I'm very happy with it. Do you have cancer concerns?

Yes, I do have cancer concerns.  Although it has not been verified by pathologists, last weeks colonoscopy revealed 2 polyps that "looked" adenomatous.  When I was coming out of the anesthesia, my dr was describing the J pouch to my husband.  I'm wondering if I'm still going to have to have Remicade infusions if I have the J pouch surgery?  My disease is in remission (because of Remicade) my last flare up was in 2013.  It's just the adenomatous polyps.

missm 

You seem to know so much... want to come out to Texas to tackle this with me?  Lol. Are you still taking Remicade after your J pouch surgery?”

MissM,

My J Pouch surgery was in 1992, around 9 months after dysplasia was found in my colon along with inflammatory polyps. I got the J Pouch specifically because of the cancer risk. I was also told, at the time, that after 20 years of active UC the cancer risk went up dramatically. My then very conservative GI doctor urged me to have surgery, and that is when I knew I needed surgery.

 I didn’t start taking Remicade until 2015. Remicade didn’t exist until many years after I got my J Pouch, otherwise I might not have ever needed surgery, and I certainly would have been on it had it existed when I had UC. It has cleared up most of the inflammation in my J Pouch. You can have a good quality of life and live with “smoldering” inflammation that is being controlled by meds.

The only biological drug that existed in the early 1990s was Imuran. Imuran is a drug they tried me on but it sent my liver chemistries through the sky and I had to be taken off after a month. It’s not as user friendly as some of the newer designer biological drugs now available on the market. We IBD sufferers had less options back then. But I still survived. And I also survived thyroid cancer as well.

 

I had Ulcerative Colitis for 30+ years and was on Imuran for about 8 years. I was diagnosed in 2015 with Colon  Cancer(Stage 3). Had temporary Ileostomy while undergoing chemo. Then had reversal. In remission for one year and it came back in my nodes. So now I’m living with Metastatic Colon Cancer although I am Stable thanks to Johns Hopkins and Keytruda (Immunotherapy). 2 years Stable. 

If you do get a diagnosis make sure that they check your Biomarkers and your Mutations!!! Those results will determine which treatment will result in a better outcome. If your doctor disagrees with this... I urge you to get a 2nd opinion!

lots of Luck!

Janie

Good news today - it's been a long 2 weeks since my colonoscopy, when my doctor said he was "90% certain the polyps were cancerous" and described the J pouch procedure to me.  I researched online and found this group and learned a lot, which helped.  Dr's office called this morning - no cancer.  I'm sure with having UC for 3 decades, family history and annual colonscopies, and beaten breast cancer in 2013, the other shoe will drop for me....but it's not today.

This is a great fourm, full of positive, informative people.  Thank ya'll.

 

It’s gotta be a great relief to you. I agree with Scott - given your history and findings an annual scope or sooner seems warranted. This will catch any dysplasia before it blooms into cancer as they did in my case. Please also keep in mind the risk of toxic megacolon. From the time that I was diagnosed with dysplasia to the time of my surgery was about 9 months. In that 9 months I was taking prednisone and was asked by my surgeon to lose weight. My condition was deteriorating rapidly. By the time I got down to 160 pounds and had surgery, I was pretty close to toxic megacolon. I know this because my surgeon told me that when he removed my colon, it was “dissolving in my hands” from the inflammation. Those were his words. He seemed shocked and he was the best colorectal surgeon in the USA, at that time (Irwin Gelernt of Mount Sinai Hospital). 60 mg of prednisone daily wasn’t stopping the progress of the disease. Surgery had to happen when it did not only to save from cancer but likely toxic megacolon that would have happened very soon if I had not had surgery, based on what I was told. You really need to stay on top of what’s going on, at this point.

 

Thanks! I've been on the annual plan for about 6 years now, and I will never again complain about prep.  I learned today that the saying "weak with relief" is actually a thing.  I'd love to get a big, ol' margarita to celebrate, but my liver and methotrexate don't approve.

I am also taking methotrexate and have gotten away with drinking on occasion with it. I am now on 7.5 mg weekly after my liver chemistries spiked a couple months ago and they reduced my dosage from 12.5 mg. I am now back to normal. My liver chemistries were fine on 12.5 for almost 4 years with occasional drinking but then suddenly crept up. My doctor told me 2 drinks a week but some weeks I have none and some weeks 4 or 5. I only have a maximum of one drinking day a week, and on that day I will have a few. Your liver will let you know if it is cool with it or not. Just go for the blood tests regular.

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