I had a similar situation. UC for 18ish years and then high grade dysplasia was discovered. Since you’ve been in remission for quiet some time, the recovery and body acclimation to the pouch may feel like a few steps backwards. But, when possible cancer is involved its better to just get that colon out of there!

How are you doing now? I know have to have surgery but after meeting with ostomy nurse which was required before surgery she seemed to be against j pouch. Maybe just because her job is taking care of ostomy but wanted to hear from someone who is living with the j pouch on a daily basis. Thanks for your input.

In my case, I was 29 and live an active lifestyle so I was able to recover well. Blessed to not have any complication. I guess it depends on if you’d rather opt for the ostomy bag or the pouch Route. Have you consulted with you GI or just the surgeon?

I’m very glad to have had my J-pouch surgery about 20 years ago. Not having an external appliance enabled me to do things I didn’t even know at the time that I wanted to do - in my case martial arts with my daughter and scuba diving. I haven’t had a perfect outcome, since after about 6 years I began to have to take medication, but my quality of life is excellent.

The overall satisfaction is about the same between folks who get a J-pouch and those who get an external ileostomy, but that’s partly due to the fact that folks who can’t stand the idea of one tend to opt for the other. It really does matter who your surgeon is - it should (IMO) be a board-certified colorectal surgeon who’s performed many of the procedures. The J-pouch is the more difficult surgery for both the patient and the surgeon.

I hope you have an excellent result, whatever you choose!

My GI that I had for 30 years she originally was at Johns Hopkins in Baltimore Maryland she moved to Mercy Medical Baltimore Maryland she was co-director of the liver and digestive health is the one who recommended the jpouch surgery and sent me to the director of colorectal surgery at Mercy Medical Center in Baltimore Maryland so definitely value her opinion as I have been doctoring with her for such an extensive period of time I do realize everyone is different and it will be a life style change I am 63 years old

Whatever you decide I wish you the best.

This is a wonderful place to get advice directly from those who went through it.

Richard.

February will be three years since my first surgery, due to high grade dysplasia . After everything I went thru,  if I could have a do over, I would have waited before having this surgery.

however, under no circumstances would I opt for an permanent osteomy. While some here are ok with an end ileostomy, I found my 13 weeks with the temp loop ileostomy, one of the most trying and miserable times of my life.

My pouch may not be great, but given the choice, I would choose it over an appliance every single time.

News577 I totally agree in preferring an internal j pouch instead of ileostomy bags. I had a total colectomy in 2008 due to an acute ulcerative colitis. I had a temporary ileostomy bag for 3 months and it was the most horrible experience. My bags never stuck to my skin even though I tried different adhesives, powders or bags. It was an awful nightmare. I still remember like it was yesterday and gives me a bad feeling😟

Thank you it's really great to hear other people's experience it gives me a better perspective I'm healthy outside of having ulcerative colitis and very active.

@Nancydiane,

It is a very personal choice, but the "informed consent" for the j-pouch is usually lacking.  J-Pouch is often referred to as The Gold Standard by gastroenterologists that have healthy colons themselves. I had excellent surgery and follow-up care and still found the post-take-down extremely challenging.   Good for that nurse who encouraged you to think about alternatives and make an informed choice!

My history is similar to yours. 40 yrs UC and high grade dysplasia.  But my disease had been active for several years before my surgery -- 3 yrs this April.  I was 59.  

If your surgeon is very experienced in the procedure, J-Pouch is a reasonable option.  But the adjustment - physical alone is, in many respects, more challenging than an ostomy in my opinion. You undergo multiple surgeries after which it may take a few  years for your body to fully acclimate.  During this time the diet changes. When you eat will probably change. The amount of time you will spend in the bathroom on the toilet and the difference in how your gut functions to pass stool without a colon will surprise you.  As will the painful "burn" in the beginning that may occasionally return.  12 month later you will wish you invested in a bidet sooner. Your sleep will be interrupted. Maybe for the future.  You may feel it necessary to wear a pad to protect against leaking.    Most importantly, all pouches have some degree of inflammation, even if only microscopic.  Responsible surgeons no longer claim your UC is cured with this surgery.    A significant percentage of j-pouchers will experience some form of pouchitis requiting medication.  If your surgeon leaves a "cuff" you may experience cuffitis.  Given your dysplasia, regular screening pouchoscopies will be recommended. These are the factors weighed against the benefits:  an abdomen as you know it - only tiny scars with a laparoscopic surgery - no ostomy opening - no external pouch to wear.    

An ostomy if well constructed is one and done.  The appliances are an adjustment, but I found my temporary loop ileostomy - typically much harder to manage than an "end" ileostomy  (the permanent kind) - actually not too hard to deal with.  People have such varied experiences with the loop ileostomy.  I found there was more control with the ostomy than with the j-pouch early on. And better sleep.   I did not like the idea of it, or the look of it.  But I got used to it, and it was not as stressful as I'd imagined.  I didn't have it long enough to know if it might have limited activities.  But I don't think so. ( The j-pouch certainly did for a few years, and continues to a lesser degree.)

A k- pouch is also something I considered.

Even with the challenges, I don't regret the j-pouch. I more or less have the diet mastered and am feeling very healthy.

Good luck with whatever you chose!

Thank you very much it does sound like you had a similar situation it would seem that we're going to proceed with a j- pouch surgery the surgeon seems competent that even though we may have some adjustments to deal with in the beginning that in the long run I will do well with it my surgery will be a two-part surgery I have noticed that the majority of the people who have went through J pouch surgery even with struggles don't regret having it and I did consider the other but that would be a permanent solution and no going back I appreciate your story as it does sound similar to mine and it gives me a great deal of peace to hear from other people who have successful outcomes even with the challenges that come with it

@Nancydiane posted:

Looking for opinions on this surgery. I am scheduled for feb 2024 due to dysplasia being found after 40 years of UC. UC basically has been in remission for over 20 years so this surgery is for cancer prevention. Hoping for some advice.

Thank you

Nancy

I had a similar situation, except the UC was not in remission, and my colon was dissolving from the inflammation (and did dissolve and fall apart in surgeon's hands when removed during surgery).

In your case I think the questions you need to ask your doctors is (1) whether annual scoping and screening is going to be sufficient to catch any cancer that develops early enough to prevent a stage 3 metastasis, and (2) are there significant drawbacks to doing surgery after cancer develops as opposed to before. Once you get those answers you should be able to decide whether you want to roll the dice or not.

I've had my jpouch since 1999. I've been relatively lucky. As you can see from my signature,  I  have had some problems along the way, but I would still rather have a jpouch than the alternative.  Recovery from surgery is hard and long. It can be frustrating at first because it takes your body awhile to adjust and finally find a new normal.  When someone asked me (about a year after the surgery) if I was back to normal.  I said no, because I now have a new normal. I feel lucky to have had the jpouch for so long with relatively few problems and a good GI doc. I wish you the best in your journey.

Thank you really appreciate the info. I have been so stressed over this.

I sure understand the stress.  It is a big deal.  I was very scared, but my UC was out of control, and nothing could stop it at that time (before the biologics). So I had to have the surgery.  It sounds like this will be life-saving for you, too, even though for  different reasons.  I realized that my life would be miserable or would possibly end if I didn't get the surgery.  That's what kept me moving forward. Being stressed is inevitable, but you are showing great courage in going forward with it. I'll be thinking of you and sending well wishes.

Thanks

Hi @Nancydiane,

I had jpouch surgery 19 years ago due to advanced polyposis and I'm doing reasonably okay. I relied on this group of folks for advice and just to vent. You have all of us here to support you no matter what you decide.

I do appreciate @CTBarrister 's questions about surveillance as a possible strategy. Maybe or maybe not. My new, young-ish G/I doc told me at our first meeting that she was sorry I had this happen so long ago because current practice with benign polyps (I had over 50 polyps discovered at my first colonoscopy) is to repeat colonoscopies every 3 months as "watchful waiting". That said, "watchful waiting" for something to become cancerous may not be a healthy or safe option for you.

Bottom line, 20 years later, the pouch and I are doing reasonably okay. Some of the time it is a bit bumpy, none of the time do I wish I had an ostomy and all of the time I am grateful I do not have colon cancer.

No watchful waiting really isn't an option for me they offered me the choice to wait 6 months and repeat specialized colonoscopy but they also said it would be rolling the dice and I didn't like that option plus the worry and the stress of wondering if I waited too long would have been more stressful than moving ahead thank you for your opinion and I will get through this as most everyone on this site has pointed out. It's  very encouraging to hear that you have had it for a long time and it is working for you and you are living your life .