Decision time: J-Pouch or not?

I was diagnosed with UC in 1999, but this is my first post to any group. Largely, I suppose, because my UC has been so mild and quiet for the last decade that aside from the pills and frequent colonoscopies I hardly give it a thought.

That changed three days ago. My last colonoscopy showed, as usual, a colon so quiet that aside from old scarring no UC was detectable even on the biopsies. But, they also found dysplastic lesion #3. My first dysplasic lesion was 11 years ago, and we almost went with a proctocolectomy at that time. But, decided to risk it and chose close endoscopic surveillance. Ten years passed, and then dysplastic lesion #2 showed up last year. Again chose very close surveillance (colonoscopy every 6 months). But now a new and larger one appeared. Doc says it's strike three - time for the colon to go.

My logical engineer brain tends to agree. I'm 57, in decent shape, financially stable, great marriage and family with a fantastic medical care and benefits plan from my well-known high-tech employer. I'd planned on retiring in the next few years, and it's slam-dunk obvious that if I'm ever going to have to have this done, I should do it while I'm still healthy and fully covered. However, the suppressed emotional part of my brain has been screaming nonstop in abject terror at the prospect.

I meet with my doctor in a couple of weeks to plan next steps. Although I still have the option of continuing with close surveillance, I'm pretty sure logic will prevail. My little brother is nearing the end of his 4-year journey with stage IV colon cancer, and I won't put my wife and kids through that.

So, the big question for me is whether to go with j-pouch or a permanent ileostomy. From reading this (and other) boards, it seems like folks who are happy with their j-pouches tend to be young and/or coming there after suffering horribly from the disease. I'm neither (though 57 is still youngish - isn't it? ).

On one hand it's great that your new plumbing is somewhat like your old plumbing. But, seems like it takes a lot of work and has many potential problems. I'm just not sure that the appearance of normalcy for me outweighs the downsides. And, will it last 35 years? Having to undo one in my 60's or 70's seems problematic. On the other hand, going with a bag seems pretty awful too - skin problems, hassles with supplies, etc.

So, which is the least bad of my bad alternatives? I find myself leaning towards going directly to a permanent ileostomy. I know I could try a j-pouch and then undo it later it it doesn't work out. But, that doesn't sound very appealing to me. All of my choices represent a significant lifestyle downgrade, but I guess I'm thinking it's best to just go directly to a steady-state position. Take the hit now, learn how to deal with it, adjust and just keep moving (he writes, while emotional inner voice continues to scream "NOOOOOOOO!").

Many thanks if you've made it through this wall 'o text. I guess I'd like to hear if anyone thinks my rationale is flawed. Am I overestimating the down-sides of a J-Pouch? Underestimating the hassle of a bag? Is this just a bad dream and I'll wake up soon?

Well, I'm not all that young lol. I had my j pouch surgery at age 41 and it's been a total success. All I can say is it's been a God send. I will always recemend this procedure if the person is a candidate for it. Good luck with your decision. If you have any specific questions I would be happy to help answer them if I can.

It really is a toss of the coin. Some people are happy with the ileostomy and others with the J pouch. I can tell you that I had the ileostomy for six years and did quite well with it. I learned to manage the bag and supplies so that I did not have skin problems, could usually stay hydrated pretty well, and learned to manage my diet with immodium so that emptying the bag could be very predictable. I had a high output ileostomy and emptied 10 -12 times a day, but I could plan and manage it. There is certainly a learning curve, but once you get it down, it´s not an issue (at least it wasn't for me.) There were bad days, but they were greatly outnumbered by the good days.

After developing a second large hernia in need of surgical repair, I decided to get the J pouch since I was going in anyway. Two months ago, I got a J pouch. It has been a difficult adjustment. I am just now starting to normalize. It is nice not to have the bag, and I am almost to the point where I am glad that I had it done. I know that others have said that it can take quite a few months, so I have made an effort to be patient. I can tell you that I continue to improve and suspect that I will soon be to a point where I am happy with my decision to get rid of the bag after six years.

I would be glad to answer any specific questions if I can. It is a highly personal decision and you can certainly learn from the experience of others, but you will ultimately need to make the call based on what is best for you. there is not a single, right answer.

Good luck!

Thanks so much for the responses! I'm rolling this all around in my head and your input helps.

It often like to think about things using analogies, and one just occurred to me. Is this a reasonable analogy?

Consider investment strategies:

A permanent ileostomy is like investing in municipal bonds. You pretty much know what you're going to get up front. The return isn't great - but it is consistent. It's possible things could go really badly (i.e. - you buy Detroit bonds and the city declares bankruptcy), but they probably won't. By and large it's the safe and conservative choice. You won't get rich doing this, but you're not likely to lose everything either.

A J-Pouch is like investing in an up-and-coming tech company. If all goes well, your return will be great - better than investing in bonds. But, there's also a big risk that the company will fail and you'll lose. High potential reward (normalish plumbing, no bag), but also high risk (pouchitis, blockages, forced reversal).

Is this a fair analogy? A reasonable framework to consider the choice?

If so, then it seems to me that I need to try to compare the degree of improved lifestyle of a "good" J-Pouch outcome over a permanent ileostomy to the degree of degraded lifestyle of a "bad" J-Pouch outcome over an ileo. Does the potential reward, at least for me, outweigh the risk of a bad outcome. Or, "Am I feeling lucky?"

But is my premise correct? Is a good J-Pouch outcome significantly better than an iliostomy and a bad J-Pouch outcome much worse?

And again, my thanks for this forum. I know there is no "right" answer and it's something I have to answer for myself, but talking about the choices should help me come to a conclusion. Oh, and I'm also assuming at this point that I have a choice - I may not. The doctor I mentioned earlier is my GI, and she wanted me to think about which path I would prefer ahead of time. She has different surgeon recommendations depending on which way I wanted to go. I've been working with her for 15 years, and trust her advice.

Haha my hubby is a financial advisor so I love your analogies! And you pretty much nailed it with a couple of exceptions. There isn't a "high" risk of pouchitis. (Or that your pouch will fail). Some people get a bout of it here and there, some don't. Some have it chronically but that's not the norm. Five yrs now with my jpouch and I've never had pouchitis Same goes for blockages. It's not he norm and you can get them with an ileo too.

I interviewed a few different colorectal surgeons. I knew I wanted a j pouch mainly because I have an uncle and a sister with long time j pouches and I saw how well they have done over the years. So for me it was a no brainer. I talked with them and asked a ton of questions to the surgeon. Since you're undecided, right it all down on paper...pros and cons of both an perm ileo and a j pouch. Talk to as many people as you can on both sides of the fence.

Statistically the j pouch has a very high success/satisfaction rate. Always risks with any surgery. A highly experienced surgeon who has done tons of j pouches is a must.

Statistically the j pouch has a very high success/satisfaction rate. Always risks with any surgery. A highly experienced surgeon who has done tons of j pouches is a must.

Never mind the poor people that the surgeon had to operate on first along the way... How can people cite a 95% success rate when apparently finding a surgeon who has performed 100s or even 1000s of j-pouch surgeries is essential to success?

Obviously I wouldn't want a trainee surgeon practising a complex procedure for the first time on me either, but if a surgeon has to be that experienced in order to perform a procedure well, the procedure itself must surely be a somewhat risky one by defintion?

I chose a jpouch over a permanent ileostomy because (if I had a choice) I would prefer not to wear and empty a bag and be dependent on ostomy supplies. Also, I've had to make some changes to my wardrobe to accommodate my ileostomy. Either way, you can expect to go to the bathroom 4-6x/day. The difference is emptying and cleaning the external bag or emptying the internal pouch.

One of my friends dads had his jpouch surgery at the CC in the 1980's and is still doing really well. He told me he never even thinks about his jpouch anymore.

When making my decision, I was also encouraged by the studies and stats provided here:
http://ronnielee-fightingforit.blogspot.com/p/blog-page.html

This topic has come up numerous times before...If you're interested in reading more responses, use the forums search option.

It's prudent advice to seek an experienced, specialized surgeon for ANY complex operation. I think it's also important to note if someone chooses a less experienced surgeon, that does not necessarily mean they will have a poor result. Selecting someone with more experience is just one way a patient can reasonably attempt to minimize risk.

Amount of toilet visits per day is an individual thing, you certainly can't expect yours to be the same as anyone else. I've had an end ileo, a loop ileo and now a j-pouch. My toilet visits have been into double figures with all three. However, with both ileos, I emptied at my leisure with no pain or urgency, and a lot of visits were purely because I liked to keep the bag empty as much as possible. The thing with a j-pouch, is if it doesn't function well (mine doesn't, long story over many posts here) you get pain and urgency, and this is where amount of toilet visits DO become an issue.
I wouldn't let amount of toilet visits be a deciding factor in your decision, especially when you don't know what the outcome will be FOR YOU, with any procedure. As I said previously, how many times any one else goes, is totally irrelevant to you.

NCOT - The location of my stoma is actually fine; Ithis issue is I cannot accommodate the bulge from the bag underneath the skinny jeans I was wearing before surgery. Not sure if my size has anything to do with it, but maybe it's more obvious for me (I am a size 2). Thankfully joggers are in style!