Successful Jpouchers

I've had a good outcome, even great. I think that, even though my surgeon said my colon was very diseased and friable on removal, I didn't act as "sick" as some when they are forced into surgery. He was surprised at that. I was young (being young always helps weather things as a whole, for the most part, I think). I had no other co-morbidities when I was operated on, and besides the UC, I was healthy. My parents made sure I always ate well, I think their focus on nutrition really helped me, too. I also have a high pain and discomfort tolerance. I've lived a fairly normal life all of these years post surgery.

None of that is anything *I* did, though. I think I was lucky in finding a skilled surgeon, too. I've had some mild issues as of lately, but nothing like my childhood days of UC. I go about 4x/day on average, without getting up at night, and I've never needed meds to thicken things. I'm not sure why. I did Kegel a lot post surgery, to keep my sphincters on the up and up! That may have helped in the long run, too.

I have had some issues particularly with pouchitis, but overall I am pleased. Probably the biggest challenge is how to strategically deal with going to the bathroom more often than the average bear.

Anywho, I was actually pretty darn healthy just prior to surgery. I exercised regularly and had tapered down to a low prednisone level. In fact I was feeling so good I began to wonder if I had made the right decision - maybe my colon had somehow changed its ways (apparently this is not all that uncommon for those approaching surgery).

During surgery? Well, I have no memory of that, but it was done both laparoscopically and robotically which I understand is less disruptive. There is certainly little evidence that I even had surgery as the only clearly visible scar was made by my ostomy. Not much left for show and tell.

For me, the keys after surgery have been time, patience and careful observation. It will take some time to heal and so you need to be patient. Butt burn was a literal pain in the ass but eventually subsided. It has been almost two years since surgery and I'm still adapting/learning.

What I think has made the most difference for me post surgery is watching what and how much goes into my digestive system. I've discovered some foods don't play well (raw fruits/vegetables save bananas, sugary items including naturally sweetened fruit juice, and alcohol). I also limit my intake - less in, less out - and eat at discrete times of day. This is not to say that I am starving, I just avoid in between meal snacks and engage in portion control. In fact, if I didn't continue to exercise I would undoubtedly be gaining weight.

I also take a number of supplements that seem to help. Perhaps the most important of these have been high dose probiotics. I'm fortunate to have probiotics covered by insurance (VSL#3ds). I don't know if VSL is the best, but it does seem to help - especially with my digestion.

Even though I have experienced a few bumps along the way and am still learning/adapting, my overall quality of life is good.

An interesting aspect of your question is what circumstances lead folks to think they belong in that "no complications" category. I immediately thought I fit (no additional surgeries, active life with SCUBA diving and martial arts, etc.). Then I wondered whether my daily Cipro "disqualified" me. So perhaps some of us have vastly different feelings about how we're doing, even with nearly identical circumstances.

FWIW, I think selecting your surgeon very, very carefully is among the key success factors, as is an adaptable approach to diet and control methods (e.g. Metamucil).

I feel very fortunate that my surgery was a success. Obviously an awesome surgeon is a must. Other than that, I just don't know why. My sister and my uncle have j pouches too and they both are successful as well. The procedure does have a very high success rate.

1. Having a top surgeon who did over 2000 jpouches
2. Being patient with the year long recovery
3. Being as stubborn and persevering despite being in recovery.

Sue

Despite some minor GI issues (which may in fact be entirely unrelated to the pouch), my pouch function itself is excellent and I currently enjoy a very active lifestyle, with few diet or activity restrictions. I go between 4-8x per day, and I'm up once per night about 50% of the time. My UC and its complications hit me suddenly and hit me hard, but despite that I now consider myself to be a very happy and successful poucher, even considering the fact that my route to the j-pouch was not necessarily typical (I had emergency surgery and a decision on the pouch was deferred to a year later, as I was so ill I needed time to recover and gain weight before anyone would even discuss a pouch with me).

To be honest, I don't know why I've done well and I think a lot of my success is simply due to luck of the draw, but I do attribute some of it to the following:

1. Having a great surgeon. I consulted with several specialists prior to making a final decision. I also self-advocated, did research and asked some hard questions of the surgeons, and of myself. I didn't want my surgeon to paint a sugar-coated, rosy picture and I made sure I was getting "the truth."

2. Having REALISTIC expectations. I accepted from the outset that I might be going to the washroom upwards of 8 times a day, and I never made the mistake of expecting my j-pouch to even remotely replicate healthy colon function. I also went into this willing to accept failure, if that were to be the eventual outcome.

3. Staying active, but while still giving my body time to heal. I started back with light exercise (walking, yoga) about 4 weeks post takedown, and gradually increased from there. I waited a good 8 months before resuming more strenuous exercise such as horseback riding and jogging, and even then, I resumed these activities slowly and gradually. Now I realize that not everyone is able to engage in strenuous exercise, but that being said, I think staying fit and exercising to whatever level you can (a 10 minute walk a couple of times a day goes a long way to good health) is prudent to a healthy recovery and a healthier pouch; the better your overall health is, the better your pouch should function.

4. Not allowing my j-pouch to define me: I am NOT a j-pouch; I am a person who happens to HAVE a j-pouch. I carry on with my activities as much as possible and work around any little pouch hiccups that may arise.

Also, just a general aside, I've noticed from reading some posts on this board that a problem at least a few posters seem to have (or have had), is not necessarily that their pouch functions poorly, but that they are disappointed because they expected something entirely different from this surgery, whether through being misled by (or misunderstanding) medical staff, having unrealistic expectations about general outcome or their recovery times (which can be up to 2 years), or even just plain old wishful thinking. So while most of the people in this category may in actuality have a very good, functional pouch from a surgical standpoint, they remain disappointed/discouraged/unhappy with their frequency or dietary restrictions because they expected something better or different. As an example, we've said in other threads that while going to the washroom 8x per day might be perfectly acceptable to some people, it could be perceived a life of torture for others. It's similar to people who can never accept the ostomy bag, while others adapt to it without issue. It doesn't mean one thing is right or wrong, but rather what is right for you on a personal level.

So, in that sense, my general caveat for anyone considering this surgery is to know and understand what you are signing up for, ask realistic questions, understand what is reasonable and acceptable FOR YOU and what your own limits of tolerance are, be patient in your recovery, expect a few bumps along the way, and don't kid yourself into thinking you might magically fall into the category of folks who only go only 2 or 3 times a day. Yes, these people exist, but that's not a typical outcome. Nor is the 12 or 15+ times a day you might see people post about here who do have complications, for that matter. No, most people who have this surgery eventually fall smack into the 4-8x per day category and do reasonably well there (the surgery, after all, has more than a 90% success rate depending what stats you read). Most of the happy people aren't on this board. They're out living their lives not otherwise giving much thought to their pouches. Basically, if you don't think 8x per day is something you can handle, you may want to look into other alternatives.

So, while it sounds cliche and perhaps even arrogant or preachy to say it, a lot of this does come down to one's own personal outlook, perception and attitude.

Thanks all! Everyone seems to agree that a good surgeon is key - can all of you share which surgeon you went to? Has anyone gone to Mayo Clinic or Cleveland Clinic?

Spooky - do you have any links to the statistics you speak of? Thanks all - very good information!

I flew out to LA to have the surgery done by Bob Beart, about ten years ago. I've heard that he operates with colleagues now at Glendale Memorial. Perhaps that's not far from you?
Colorectal Surgery Institute

I agree with having a top notch surgeon in order to add to the likelihood of having a positive outcome. I also attribute my J-pouch success with the fact that I chose to wait a full year between Step One and the takedown. I just felt so good (finally) and was reluctant to take any chances in giving that up. When I finally went ahead with the takedown, I was very well healed and my takedown was a piece of cake.

Great advice already given above ... just want to emphasize that a positive mindset cannot be overemphasized.

The road is going to be long. It is going to have hellish potholes from time to time. But one has to keep the a long-term perspective and maintain confidence that the procedure will work out.

Don't live from bowel movement to bowel movement even though it is hard not to.

Don't stop challenging your body, i.e. work different foods into the rotation as you stabilize and see signs of progress

Don't stop exercising or start if you don't do it already.

I hit 50 next week and have been doing this for more than half my life. Wouldn't have done it any other way.

After having UC for over 8 years, I have no regrets of having the J-Pouch surgery. I still feel I could do better than I have done though, but it beats suffering with UC.

For me, I normally go about 8 times in a 24 hour period getting up at least once a night.

I still get pouchitis more frequently than I like. Perhaps this is my fault because I just don't have time to eat small meals.

The frustrating part for me though is sometimes, I cannot plan things to occur if I get pouchitis. What I mean is I can do what I want to do if my body lets me. That sucks.

For example, I was supposed to go to NYC with my brother for some fun but the day before, I still was not feeling up to par to go because I had a mild case of pouchitis which results in butt burn, 12 x a day in the bathroom, not able to hold it in but do the best I can during that time. So that is very frustrating.

Therefor I had to cancel NYC with my brother.

Everyone's comments are on the money. I think a positive attitude is critical, and just being able to laugh at the ridiculous things that are bound to happen when you have an ostomy for the first time or are adapting to your pouch in the first month or so. I got my surgery at Mayo in Minnesota a few months back. Dr. Eric Dozois was my surgeon. I cannot say enough good things about him and his surgical RN, Julie. When I had a few small bowel obstructions after the first surgery, they were on the phone with my wife and even pushed up my second surgery so they could explore what was going on (I live in Hawaii, so they only got to see me a few days prior to operations, but they kept in touch when I was having problems). Also, the ostomy support at Mayo was excellent. I have FAP, so I wasn't accustomed to a lot of the problems that folks with UC or pouches deal with everyday. But, you can schedule WOC nurse appointments at any time, and they'll just watch you practice changing your bag if you need. I'm sure the level of service is high at a lot of centers around the country, but I know I had some great RNs and doctors that helped me get back to normal in pretty short order! There's probably centers close to you that will offer similar service, but since you mentioned Mayo, I figured I'd throw my two cents in. Good luck if you decide to get the surgery!

I'd love to be all smug and say, "Well, it's OBVIOUSLY because I'm such a fit human being with excellent genetics" but, um ...

But seriously: I think what everyone says about having a good surgical team etc is very true, but what really made all the difference for me, is having a positive outlook. It isn't always easy, but it can get you through some tough times. That, and the support of the people you love.

I too am considering J-Pouch, but all I kept reading was the horror stories. This is great and truly believe that attitude is the key and a good surgeon. Anyone out there have their's done in Michigan? U of M Hospital?

quote:

all I kept reading was the horror stories

What do you expect to read on a support board? If you want balanced feedback ask the surgeons you speak to for names of patients who had surgery and then talk to them. I did this. I recall vividly one guy I spoke to whose only real complaint was the temporary ileostomy. He told me the bag burst during sex with his girlfriend, her pubic area was splashed with the fecal contents and she broke up with him. I can still remember talking to that guy 21 plus years ago. And the funny thing was after surgery I had almost the same reaction to the temporary ileostomy as he did, complete horror.

On this board you get a high rate of posts from people who have serious issues with the J Pouch. I have issues, but they mostly are not very serious, in terms of my daily life or in terms of losing the Pouch. I have chronic inflammation in the J Pouch, which is controlled, but a concern. Despite that, I compare my life now to what it was before, and I say it was a success. In reality, it is a "new normal", but the new normal is better than the old by a lot.

I feel very fortunate with how I came through
this whole ordeal.

July 3rd will be my anniversary date for my
first surgery, my takedown date was Aug 28th
last year.

Back to working full time, three long
motorcycle trips, surfing regularly.
My main problem with food now is eating too
much of everything.

The days of colitis flare ups are a fading memory.

I did this surgery at age 52 due to dysplasia.

I can't tell you why some people come through
this surgery better than others. Going into it I
was on pretty damn high doses of 6MP with
monthly liver function checks. My symptoms were
pretty calm and under control.

The dysplasia and the condition of my colon
after 20+ years of IBD was the final straw.

A lot of us go into this thing on thing on the
down side looking up. They don't have The UC/CD
in control, they don't have some kind of base
standard to measure against. All I can say is
to give it some time and above all, be
positive.

Go to www.ihaveuc.com There are many successful J pouchers on this site. I actually like it better. It has a load of success stories and each story is different. The website actually got me ready for my sugery more than I realized. Go to the surgery tab and start reading. i have even added a couple stories myself about my two surgeries.

Mike H

I was 45 when I had my colectomy/j-pouch in 2004. I am now 54. I am a cardiac electrophysiologist who probably ignores a lot of things to do with my body (time to see a dentist, can't remember the las time I went!).

I had sigmoid UC, was getting to the point of despair because of multiple and unpredictable BMs/blood showers and very painful cramping without warning from my gut. I tried a lot of things. The final go round was cylosporine which did nothing.

One of our NPs developed UC; she wanted children and did not want to be on immunosuppressives. She went off PDQ to a local colorectal surgeon with a good reputation. I was right behind her.

Some of my partners said I should go off to the Mayo for surgery. I did not do that because it was too far away and would have put too much stress on family and me. I asked around, the colorectal surgeon I was going to use had good credentials (anesthesiologists and nurse anesthetists know everything about surgeon credentials/skills in the OR)

I had some strictures in the first year after surgery fixed with self dilation (gloved index finger up the rectum). I have probably ignored multiple bouts of low level pouchitis. Seems to go away if I behave, eat some apples to blow out the badness, and take some peptobismol.

I am not very good with my diet, like my beer, and work very long hours. I am also in the middle of training for a half ironman (anyone for swimming at 4 AM?)

I ignore a lot of symptoms and muddle through, in the classic English way.

With my J-pouch, I know I can go 4 hours or more without a BM, and things are much more predictable.

I would love to sleep more than 3 hours, but invariably, I have to get up at 1 AM after 3 hours and use the bathroom. If I go back to sleep, I consider myself lucky.

My patients don't get much sympathy from me when they come in complaining about their sleeping patterns.

Nonetheless, I am now approaching 10 years out from my J-pouch. I am healthier than I have been in many years, working 60 to 80 hours a week in a high stress but high satisfaction job. I am doing things that I would never believe I could do (several marathons a year, hopefully a half iron man this year, a full iron man next year. I also hope to do a marathon or an ultra on every continent by the time I am 60. N America, Europe, Asia down so far, New Zealand this fall, S Africa next year, on waiting list for Antarctica in 2015). May even squeeze in South America at Machu Pichu (?spelling) next year.

I am having fun (I think!). No stinking J-Pouch is going to stop me.

I totally agree with all the posters, especially with the one who said family support is a key.

Most people turn to support forms to rant/complain. It's rare to hear the good stories. That said, it's also a matter of expectation.

I was so sick with UC, my choices were all but taken away from me in 1995 when I had my j-pouch. I had it done in one step. The recovery was tough. I was a young mother with 3 small children.

Fast forward nearly two decades, and I am doing ok. Perfect, no way. But I never complain about this. I only get 3 hours of sleep at a time, ok sometimes 5 and that's a treat! I obviously have to watch everything I eat, I also have celiac, but oh well.

I have had many jobs in that time, including going back to school to become a nurse. I've been a cub scout and girl scout leader including hiking and camping with UC and with the pouch. I've traveled all over the world by car and plane. I have almost no problems with pouchitis, leakage, etc. I go to the gym, do zumba and pilates. Never had any issues with sex or anything. (except nuts, and seeds...I had two blockages due to those...not pretty)

But all in all, I always say to myself, it could be worse, UC was worse, and many people have way worse problems than I. I won't say it's wonderful and I don't discount other peoples issues, but a lot of it is your attitude/expectations. In another time most of us would be dead, so I think this is better, no?
Peace all..
K