None of the choices seem great ... how to decide?

Remember that people who tend to post the most are either people in recovery or people who have problems. The people who have no problems have generally moved on with their lives and are doing great. I love my j-pouch and I am five weeks post take down.
You might want to do a BCIR search here. I have seen some good postings about it. My understanding is that it is not a common procedure. You definitely want an experienced surgeon for either choice. I suspect the reason I have had so few problems is that my surgeon has been doing j-pouches for more than 20 years.
It is a difficult decision and you are wise to take the time to look at all of the alternatives.

I know it seems like there are ton's of problems with the jpouch but it beats UC and it also is better than having an ostomy. At least that is my opinion. Being that I have never had a BCIR I can't speak from experience but it seems like that is just a different version of an ostomy. You still have appliances to deal with and there often are corrective surgeries that are needed later. (Be wary as the BCIR folks on this site really push people to get them, you have opened a door by asking. Just saying. I can't figure out why they are so adament that their pouch[kpouch] is the BEST way to be.)

Having a jpouch is definitely a journey no doubt about it, but with all the support and combined experience that is available on this site I would reccommend doing it before either of the other options. I have had a jpouch for 13 years and did have a lot of problems before I really dug deep and started taking the advice I got from the smart, experienced people here at jpouch.org SERIOUSLY. You have to take good care of your pouch. It comes first. It is not a,"new colon". You have to monitor and adjust your diet according to what your particular pouch needs. Also many pouchers need meds like immodium daily, fiber--metameucil or therapeutic antibiotics to keep things working well. Most people end up figuring out a way to live a pretty normal life but rarely are those the ones that just wake up in the morning that way. I repeat it takes effort.

Now your husband has already lost most of his colon so he is in the realm of a not-normal poop life. Get a good surgeon, go to the Cleveland Clinic if you can by all means! And just stay on top of what advice keeps you well. It can take time, but actually I am doing really well now after practicing what the experts on this site preach. I am no longer on daily antibiotics, I eat a pretty normal diet--but I do like super healthy food. I have also become accustomed to the foods that work for pouches. Low gluten, mashed potatoes, peanut butter, moderately spicey. On and on....

Good luck with whatever you decide, there will be a lot of people here for you!

The majority of j pouchers are out and enjoying their life, not posting here on a support forum. It is a very successful procedure. Unfortunately there are some people that have ongoing problems but it's not the norm. I have two family members with long time j pouches and they have not had any issues. I have been blessed with wonderful results too. I just stick around here because I like to try and help people. I know how scared and negative I was before surgery. I did not want it done. I'm so glad now I went through with it. It gave me my life back. I do not know enough about the BCIR to comment on that. Good luck to you both with your descision.

quote:

settling for a permanent ileostomy is beyond depressing

They were my thoughts exactly. And it's what pushed me to give the j-pouch a shot. I was quite desperate after 12 years of severe UC and thought I had nothing to loose in trying. If the pouch failed, the ostomoy was plan B. But six years on and the j-pouch has worked a treat for me.

People's experiences are widely varied, but day-to-day I've not thought too much about my pouch since the initial recovery and adjustment. While people have issues, and I'm currently having some issues relating to a probable Crohn's diagnosis, I wouldn't swap the j-pouch for an ostomy. No way. The freedom of pooping the way God intended, lol, and without appliances, catheters, etc., is great.

It's a personal choice though, based on personal experience. Being a 24 year old girl, living with an ostomy seemed unbearable. But everyone is different. I considered the BCIR, but as the j-pouch is overwhelmingly preferred my most surgeons, I thought that said alot. I trusted my doc and his recommendation of the j-pouch.

Oh, and pleeeease stay away from robo-doc and his toys. You want someone with as much experience as you can find. My doc is a professor, and is head of his field, teaching in a major city hospital. You want the best!

I now have a permanant ileostomy after my jpouch completely failed. My quality of life is far superior to that with UC or with the jpouch. Eat pretty much anything I want and do pretty much anything I want.

Best for you to get to doctors with experience in everything and anything that you are considering. A newbie with a new toy... absolutely not... never... ever. No matter what you want the most experienced doctors you can find. Speak to these doctors about the pros and cons of all three options.
good luck.

I have to agree with the above posts. Don't be the guinea pig on the robot. Please be sure to find the most experienced colorectal surgeon. I remember in the hospital right before surgery the stoma nurse said to me "there's 1 shot at creating the best j pouch" I think you'd be wise to travel to Cleveland clinic.

VAST majority with a J pouch do great, are out living their lives, and don't even consider themselves to heave a health problem, and certainly are not posting on J-pouch websites. The people who post on a support site are among the minority who DO have issues. I have had my pouch for 20 years. First 7, nary an issue-a few bouts of pouchitis which antibiotics or a course of enemas would clear up in a few days/weeks every couple years. After my fistuala and botched surgery to repair it, I have had issues with leaking, etc. but still, way fewer problems than when I had my ostomy. Even in the past year, as I have developed chronic pouchitis, I still prefer the medical hassles of trying to get things under control with meds, than reverting to a permanent ostomy-for me, that is a last resort, and I perfer to do anything possible to manage functioning with my pouch.

VERY FEW docs in the country do BCIR/K pouch, and I think that unless there is a reason why a j pouch is contraindicated, they would not do a BCIR before trying a j pouch. I know this is a good option for those who have it, but it is not a first line option, if J pouch is viable, for many reasons. The rate of reoperation at some point in time with a BCIR is nearly 100%, and since only a handful of docs even do thses, any time you have trouble you will need to travel to one of the surgeons to treat you. I am treated at Mayo Clinic, and they will not do a BCIR/K pouch due to the high rate of reoperation on them. They do all they can to get the j pouch as functional as possible, and if that fails, then ostomy is recommended, although they did advise me I was free to get an opinion from someone who does them-they recommended ST. Petersberg Florida, if it was something I wanted to pursue further.

Hands down, I would advise your husband to go for the J-pouch. The worst case scenario is that it doesn't work, and he is back to an ostomy, but heis chances for a long and "normal" life with a J pouch are excellent-my pouch is old, so I don't know the stats, but I would say easily 90% of J pouchers go on to have a great, normal life, with only minimal issues and the occasional, treatable bout of pouchitis. Good luck to your hbby!

I'd add -- it's not just the surgeon/surgery that you have to think about, be very certain you have a GI or CR surgeon lined up for afterwards if a j pouch is the way you decide to go. Aftercare can be just as important (or nearly, anyhow) as the jpouch creation.

Thanks everyone for the advice and information. We really appreciate it!

I've heard great things and bad things about each option. It just depends on the person. If he is not bothered by having surgery, there is no harm in trying the jpouch. If it doesn't work out, he can always convert to a BCIR/kpouch or ileostomy. I was told you have to fail the jpouch to be a candidate for the BCIR/kpouch, but it may depend on the surgeon. The BCIR/kpouch is uncommon because the jpouch came along not too long after it was developed, and it fell out of favor since the jpouch is more "natural."

Also, he may adjust better to an ostomy as time goes on. I know nothing sounds good, but there are people on this site that prove that you can live a great life no matter what you end up with.

Peaches
You already know what the Ostomy is like and don't find it an ideal circumstance - I never did either and I had one for a year after each of my first 2 surgeries leading to a J Pouch in year 3 however some prefer it and others have no other option.

The one thing I am aware of is that if your J Pouch fails you can generally still have a BCIR or K Pouch.

Since you are considering the Clevland Clinic and everything I have read indicates they are one of the best I think you would be well served to talk to them first. (Dr Chen seems to be extremely well thought of here). They are well positioned to review your husband's situation and give you information that will help you make your choice.

I guess it's always good to remember this is not a one size fits all circumstance. While many have been well served by their J Pouch a number of others have made other choices for a variety of reasons.

I have had a J Pouch for 3 years and while nothing is like having your own Colon it is generally serving me well but it sure is not perfect.

Best of luck with your decision and I would echo the advice of others here that you want the best surgeon you can find and still there are no guarantees. (Against the advice of my G.I. I waited 6 months for the surgeon I wanted. My G.I. was sure I wasn't going to make it. Although I nearly didn't make it I believe I made the right choice for me).

Lew

I would give the j-pouch a try. The Cleveland Clinic says well over 90% of people are happy with the j-pouches. It can be scary to see all that can happen, but most don't. I had mine done by a wonderful surgeon at the Cleveland Clinic and haven't had any surgical problems at all. Went to my year check-up (at 15 months) and she said my j-pouch looked beautiful. It's not easy, but so much better than UC! Good luck to both of you.

I would agree with a lot of people that have already posted. My life since my surgery is as close to normal as can be, besides the five or so trips to the bathroom every day. I had a small stricture problem after my surgery, but have not had any problems with that for at least 6 years. I do have to limit some foods like raw vegetables and nuts, but I haven't encountered anything I can't tolerate at all. I get an occasional blockage if I eat too much of something I know I'm not supposed to - the last one was squash that was a bit under-cooked. But these normally pass within a few hours, the longest took almost a day.

I've heard the Cleveland Clinic is great. I also lived in Delaware when I got my surgery and went to Presbyterian Hospital (UPenn) in Philly. My surgeon, Dr. Nussbaum was still there then and is practically a legend in the field. He is retired now, but I would trust anyone who learned under him.

The thing you have to remember is that everyone reacts differently to every surgery. Some people will do great and some will have a hard time. I think I am one of the lucky ones who really doesn't have many problems with the j-pouch. It literally saved my life.

I'm a former poucher who had pouchitis from day one and chose the ostomy over a life of drugs, specials diets and living around my pouch. It didn't work for me. But lots of folks here live with what I had and worse but are ok with it and happy. So just to make it more confusing, what makes one person happy might not work for another.

If the colostomy makes your husband unhappy, and he wants to try a jpouch or BCIR, consider these questions: what will be acceptable quality of life? If he gets pouchitis and ends up on long term antibiotics is that ok with him? What if he has to eliminate fav foods? Or restrict eating to certain times of the day? Jpouch bathroom visits vary widely from 6-12 times a day - if he ends up,with 12 is that ok? What if the pouch doesn't work for him - what then? How much time and energy and surgery is he willing to accept? These are all the negatives of course, but being prepared is the best thing. Then if he has no issues great. But in my mind going forward without addressing the possible issues will only lead to unhappiness in the end.

BCIR is only performed in two hospitals In the us so unless you live near one of them choosing that path will mean travel for surgery and if there Are complications few local drs will be able to help. Knock pouches are a little more widely done and making a resurgence, but I opted forma traditional ileo so that I could be treated any where and wouldn't need to stay tied to specific specialists.

It's a big decision for sure. Just don't shy away from the tough questions right now. In the long run you'll be better off.