To Pouch, Or Not To Pouch...

1, Every pouch is a little different and you eventually find your pattern like, I can drink a juice smoothie only in the morning and then eat a large lunch around noon if I want to keep my pouch from being too active, this gets me 6-8 hours without needing a washroom if I really wanted to, some foods make you go more, some less.

2, If you start slow you will be fine, as in rebuilding that core muscle that's been through a lot. My takedown was 4 months ago and I'm as strong as I've ever been and can lift weights and even do sets of pull ups no real big deal here.

3, I wanna say the first few months my pouch wasn't great and I was even regretting the choice but after about the two month mark I found a routine that worked and my pouch has improved, weirdly that came in dietary changes for me, gluten and dairy free mostly. I think most jpouchers go accident free, I unfortunately did have some accidents while I got use to the new plumbing, I think that also could of been due to having longer times between ileostomy and takedown causing lazy muscles down there, but now I sleep through most nights fine with no leakage issues, maybe some annoying gas here and there, but hey I wanna say I never crapped the bed I atleast almost made it to the bathroom in time!

I'm seven months post takedown. I use the toilet more than I did with an end ostomy; a lot of the foods I enjoy, that I could eat with my ostomy, I no longer can. I get night time leakage and day time leakage if I need to stay away from the toilet (ie at work). I get burning in the anal canal (very unpleasant). I'm now taking about 50 loperamide a day, in order to eat and hold down a job.
Life was fine with an ostomy, I went through two further surgeries to end up in this state, if it ain't broke....................

I think Marianne's post highlighted something important; you have a good, well behaved ostomy. Definitely worth taking into account in your decision making. As I said before, if it ain't broke..........

My disclaimer:

I am 2.5 months out from takedown with a 2 step procedure. It takes up to a year to see full results (although normally the first ~3 months are most improvement happens I think). I loved my loop ileo so much that I was afraid of takedown. Right now I am having a really rough time and would gladly trade places with you so that I could enjoy ileo life.

1) I'm currently going 2-4 times at night, and between 10-12 during the day. Much more than when I had UC.

2) Exercise/flexibility. Your hernia situation will not be much different in pouch vs. stoma. Stoma has the additional parastomal hernia risk, but in any load bearing activity, all of us should be wearing support belts. While I had my stoma, I was able to fully exercise. Right now, I cannot run because I may leak stool. Same goes for other exercises.

3) Leakage. I have day and nighttime leakage. Sometimes it happens when I'm not noticing, more often when I am hurting and trying to hold in gas but can't go any more. All my underwear are soiled.

I will totally echo SL and say "if it ain't broke..." I came into the jpouch operation having talked to people who have good results and my surgeon said I should be fine to travel abroad 6 weeks after the operation. Right now, I struggle every day with guilt over my decision. The ileo is not the greatest thing, but it will be much easier for you to deal with medical supplies and accept your stoma than deal the potential pain and uncertainty of a jpouch. In my humble opinion, its success must be overstated and there may be a large number of people who just deal with the lowered quality of life because they do not want to have more surgery or cannot mentally accept the bag. I am fighting so hard to get a good night's sleep, to not poop myself during the day, and live a normal life. All I have right now is the hope that I will reach the 1 year mark doing much better. If not, I need to summon the courage for another *massive* operation just to get back to the point that you are at.

That said, if you are aware of the risks and this is something that you want, it is only right that you give it a go. Most people are happy (how happy?) with jpouch life.

Thanks for the replies, everybody. Interesting to see such range of outcomes - and that's the problem, isn't it? You either end up with a good working pouch, or one that's real problem; and the uncertainty of not knowing which I'll have is why I'm taking my time.

If I knew my pouch would be like my end ilio, I'd set my appointment tomorrow. But the risk of losing the freedoms I've gained back has given me pause.

I'll be putting some deep thought into this one for a few days.

If you get a good working pouch, you will love it. If not, then every day you will kick yourself for getting rid of the ileo. Believe me, I know all about the last part. My pouch was a problem from the beginning. I put up with it for over 20 years, until It finally had to be disconnected. It is so scarred in with adhesions to everything, removal is next to impossible. So it is still there causing me some problems, just not near as bad as before. Good luck if you decide to opt for a pouch, but don't ever just say "Well, I'll just try it out to see how it goes, and convert back to my ileo if it doesnt work out". It isn't that simple, because now you are facing major, major surgery to remove, plus losing intestines in the process.

The satisfaction rates come from large cohort studies just like for any other kind of medical treatment. I've been involved in conducting a similar study (for a different surgical procedure unrelated to UC) and it's pretty simple:

- The researchers come up with traits that they want everyone in the study to have and traits that would exclude that person from participating in the study. Any study will describe exactly what these are. An example of what you might see in such a j-pouch study would be: everyone in the study underwent j-pouch surgery; patients were excluded from the study if they had infectious colitis.

- When a patient who meets the criteria for inclusion visits the clinic, they're provided with a questionnaire about their quality of life and satisfaction. Alternatively they might be interviewed by a researcher.

- In order to get data from patients who have had their pouch for a long time or who don't visit the clinic anymore, we also pick former patients and speak to them on the phone or mail them questionnaires.

- Finally, the anonymized data from questionnaires and/or interviews are combined with information from the patients' medical records. This complete data set is analyzed and used to draw conclusions. These can be as simple as "95% of patients report satisfaction with their j-pouch" or as complex as "A prior diagnosis of indeterminate colitis was associated with a 2-fold increase in the risk of pouch failure" (made up examples).

- In addition to all of the above, studies of this type will also include summary statistics that describe the cohort of patients whose responses and charts were studied. This helps to show that the group that was being studied is representative of the entire population of patients. For example, in a really large study like the Cleveland Clinic paper, you would expect to see about a 50/50 gender split.

That's how quality of life and outcome statistics are generated without sending a questionnaire to every single j-pouch patient. The ability to achieve statistical significance with data obtained from a sample of patients (as opposed to studying every single patient in the world) is the principle that underlies pretty much all modern clinical research.

Links and excerpts to some relevant studies: http://ronnielee-fightingforit.blogspot.com/p/blog-page.html.

I love my jpouch! I struggled a lot with my temporary ileo and knew that I would be the kind of person that would take a long time to get used to it. So the jpouch route was pretty easy for me to decide on, plus my surgeon said I was a good candidate for one. I stayed home pretty much the whole 2 months I had my ostomy and now with my jpouch I do all the things I could before UC. I eat whatever I want although I still have not tried popcorn yet. I will tell you the first few months with it are not easy. I had major cramps that were almost debilitating since they hurt so bad. I only had accidents the 2 nights I was in the hospital. Once I got home I was fine. I go about 6-8 times a day including once at night. If you are happy with your ostomy then I agree with people saying "if it ain't broke" because you really don't know how it will turn out until you do it. But I was miserable with the ileo which is why I went with a jpouch. Not everyone has the same experience but I am definitely glad I went for it because I have my life back! No medicine or anything! As far as holding for a few hours, I can do that but my stomach starts to hurt the longer that I do so it just becomes more unpleasant the longer you hold it, but it is doable. But ultimately it is up to you and what you think you will be happier with! Best of luck!

Pluot said...
If you believe that humans are basically bad and everyone is out to trick you, then I'm sure I can't change your mind. But the truth is that a huge amount of thought and effort goes into developing studies so that they are fair, useful, and relevant. No one owns a patent on the j-pouch. Believe it or not, many researchers do this just because they want to improve the lives of other people.

I don't think everyone is out to trick me, but I do think there are heavily vested interests behind some studies - whether that includes j-pouch studies or not, I don't know. All I know is, that figure of 95% satisfaction rate sounds completely implausible for a complex surgery with numerous short and long term complications. Yes, UC is miserable but I think that people consistently overstate a) how awful it is and b) how much better the j-pouch is: there seems to be a strong confirmation bias towards believing the j-pouch is better than UC, no matter the actual experience.

As bad as my Crohn's was, I'm open to the possibility of outcomes which are as bad as, or even worse than, the original disease. I'm literally taking a punt on getting a better outcome instead. But in my mind I know it's gambling and the 95% satisfaction rate doesn't reassure me in the slightest. Mostly because I don't believe it's real. But also because 5% still means a 1 in 20 chance of having a crap outcome.

Edit: Never mind, I'm probably just spouting bollocks at this point, to be honest. It wouldn't be the first time <_<.

Post Edited (NiceCupOfTea) : 6/21/2015 12:23:18 PM (GMT-6)

One trend I have noticed, is that most (not all, but most) people with a j-pouch, that state they prefer it to ostomy, had a 2 stage operation. This means they lived a short while with a loop ostomy. This is far different from life with an end ostomy. After seven months with my pouch functioning, I can state I prefer an end ostomy. I'm still hoping that will change, but that's where I am right now.

Silent Lucidity said...
One trend I have noticed, is that most (not all, but most) people with a j-pouch, that state they prefer it to ostomy, had a 2 stage operation. This means they lived a short while with a loop ostomy. This is far different from life with an end ostomy. After seven months with my pouch functioning, I can state I prefer an end ostomy. I'm still hoping that will change, but that's where I am right now.

i don't think that's true. I've seen a lot of people who post here that have had 3 steps and they prefer the pouch to the ileo.

I have a parastomal hernia that needs repair and the surgeon wants to give me a Jpouch at the same time. I have adjusted to the end ileostomy but would love to be rid of the bag if I could. He says that he can do it in one step.

I have been reading this thread with interest because I will soon need to make the decision. I am leaning towards doing it. It seems as though some are happy with it and others not, so it is certainly a risk. Does anyone know what factors could tend to increase or decrease those odds of success? My surgeon also claims 90% success rate for the Jpouch, but that seems high with what I have read.

On another note, has anyone used Dr. Donald Colvin in Fairfax, VA, USA?

Thanks for your comments!