I really want to know the answers to these questions too. Please can someone put in their thoughts.

Hi Megan,   I had same surgery no colon and tiny bit of rectum left.  They usually build the pouch when having the ostomy surgery  I thought.  You either go through with surgery knowing you are going to have a pouch or a permanent ostomy.  I actually hate my ostomy.  I can't wait to get rid of it which is happening in 3 days.  If you love yours then why even consider Jpouch.  

There is a learning curve from what I am expecting.  The pouch takes time to increase it's capacity to hold more volume.  As time goes on bowel movements should get less frequent down to about 4-6 a day.  Have to learn difference between just passing gas and actually having to poop.  I do exercises to keep sphinkter muscles strong.  The only leakage hear might happen over night while sleeping.  That should stop from happening over time.  There is also the dreaded butt burn that I am hearing about when all that enzymy stool is now coming out your behind.  Have to use barrier ointments at first like calmoseptine to keep skin around anus intact and not raw.  other than that I hear it is worth it.  Hope this helps and good luck in your decision.

Steve

I will try to answer your questions, but I am one who has not had the best results. You realize, if course, that many/most of us on this site have problems though a much higher % of people fared well and don't spend time on this site. I've heard statistically 90-95% people have good results. 

My takedown was 14 months ago, I do not want to go back to ostomy though when I had the end ileo things worked pretty good once I figured things out and got right appliance. When I had loop ileo I had lots of problems. I may have to go back to ostomy, and that is a major surgery, would be permanent, as I believe they sew your butt shut, and recuperation is painful and takes several months. But, then there would be no leakage- yeah!

Even  though I am struggling with inflammation of the cuff, causing bleeding and more  frequent bowel movements I can hold the stool most the time. 23.5 hours of day I can hold it, but still have small amount of time most days when I have leakage and go to empty 2-4 times in short period of time.  But it was amazing how quickly I was able to hold stool after my takedown, even liquid. I still look for and know where all the bathroom are, but I can hold most the time 2 -2 1/2 hours. When I am home I try to hold ot longer to "train" it to hold  longer. Sometimes I can hold it 4-6 hours, but it's a bit unpredictable for me.

Would I do it again-yes! But I would wish for better results. Going to bathroom 10-14 times a day is not fun and takes a lot of time out of my day. I had very small amount of time where I felt normal - it was about 41/2-5 months after takedown. Then I developed inflammation. Hopefully you will be one of the lucky ones! And hope this helps!

laurie

Thanks for your replies guys,

At the time of my surgery I opted to not have the pouch constructed but the surgeon left some rectum just to allow for the chance down the track. 

I know its weird to consider a J pouch when I like my ostomy but at some point I will have to have my rectum removed because of ongoing disease. Once this happens I will never have the option of having a J pouch and I was wondering if it was better to give it crack because I can always go back to my ileostomy. 

Laurie I realise that most of the stories I hear are negative because people that have a perfect time tend not to post on websites- I wish they would! hehe

I suppose my next steps are to do some  more research, have a think and talk about it with my surgeon.

 

HIII!!  I just wrote this to someone else so I thought I'd post it to you too...

 

I'm not going to sugar coat...honestly, even after almost two years I find the j-pouch tough.  My j-pouch is "perfect" by all means in construction and function BUT my immune system and the disruption in my microbiome continues to cause me grief.  Yes, j-pouches can be constructed wrong and give problems (rare) but you may always, as many of us prior UC'ers do, deal with IBD.  It sucks and it's not going away in most cases.  J-pouches (and perm ileos) make it manageable.  Bonus! 

 

I really thought after I removed my colon and got a j-pouch all would be like before...pre UC.  It's not.  It's different, you are altered just as with a perm ileo and no, I do not feel totally "normal."  On good days, when I forget I have a j-pouch and have little urgency, I get excited like YES, I can do this...we are going to get through this!  I also had my colon taken out rather suddenly after two severe flares so I didn't have years of "I'M SO SICK OF THIS UC" I felt healthy and "normal" and then just four months later my colon peaced out.  So...I'm not saying you won't feel "normal" with a j-pouch but my disease process was short which led me to wanting to have that "normal" feeling again...not really understanding that with UC we never quite feel "normal" again.

Many times I wish I had a perm ileostomy.  Mainly, because I used to travel and be outdoors a lot and it's difficult now.  With the loop ileostomy (even though it was challenging at times) I could go anywhere, no urges, nothing.  But...my husband reminds me that it was not easy either.  WHEN the body behaves and the j-pouch functions, it's a magnificent thing...when it doesn't. ugh.

 

Mainly I find the urgency to be challenging.  Yes, you can hold it but you know when it's time to empty.  You don't have to learn to hold it...your muscles just "hold it" like before. I found the transition stage surprisingly easy and "the urge" feeling similar to when I had a colon.  I guess ultimately, it's the same nerves telling us it's time whether once a day with a colon or eight with a j-pouch!

 

For urgency, Immodium and fiber helps a bunch as does a low carb, no sugar diet (for me) and then there is pouchitis....When I was so ill I didn't even know about pouchitis, I just wanted the misery to go away and not take any more drugs but pouchitis is a frequent guest in my j-pouch house and I wish I knew more about it prior to surgery.   The loop ileo was great...(pouchitis who?)  Not sure it would have swayed my decision but...

J-pouch recovery takes years.  And this is a good thing!  At a low point just a few months ago, I called my surgeon about j-pouch reversal surgery.  She pleaded with me to wait.  She keeps stats on all her patients and in MOST cases, the MINIMUM time for a j-pouch is two years to get balanced and in sync with the body.  Now, those two years aren't all bad, not at all...and you will have much evolution in your function.  It gets better...day by day...month by month...and I'm actually optimistic to see how it functions at 3, 4 and 5 years out.  I bet yours might function even better since your body has already adapted to a perm ileo. 

 

If it's one piece of advice I can offer, please take the time to find the best surgeon (which you might already have) and IBD clinic for post surgery issues!  Remember, you have will have a familiar option even after a j-pouch should you not adapt well to it. 

 

Going back to an ostomy after j-pouch would be possible I would think, although you would have less intestine for absorption.  That would be a good question for your surgeon...also would you need a loop while the j-pouch healed?

 

I wish you all the best with your decision!

 

Thanks ccolbymontucky,

That's my main concern at the moment- I have a perfect ileo (no leaks, not flush with the skin etc) so its that VS a J pouch that may take years to get used to.

 

Yes to your first question.
It will be a challenge... But so was the Osteomy... Right?
Your second question I don't understand.
But if you mean will you be using your pouch.  Yes.  Where else will it go.
Yes you will be pooping out of your rectum from your pouch.
Cannot answer your third question.  I still have my pouch.  But I have heard and read getting rid of your pouch or going back is tough.
Your fourth question.  Normal will never be there.  It is better than dealing with UC.  That is for sure.  It's as normal as you feel now if it works the way a pouch should work.
Now... It takes some people... Like me a long time to get a decent functional pouch.  But some get right into it and have few problems.  My story is different and it was difficult.  Still is at times. I am close to 18 months since my colon was removed.  I didn't really have a takedown or time to wear a bag at length.  I wore it for less than a month.  Complications arose and had two open surgeries so on the first open surgery they closed up the stoma and hooked me up.  So it took me a long time to wrap my head around it and my body to adapt.
So.... If you had intended to get a pouch... Why not?
Try it.
That's actually what I did. 
They said my uc was so far down I would not get a pouch to function properly.  But the surgeon said it was possible.  So... What do I have to lose by trying the Pouch?
If it doesn't work I will bag it.  So far after all I have gone through.... Most unexpected and unintended I think it's starting to work!  Knock on wood!.
Give it a shot.  If it doesn't work you can always tell yourself you tried instead of wondering should I have tried it.  There will be no doubt.
None of it is easy.  It's major major surgery... Period!
Normal.  It's what you make of it.  You have a bag now.  That is not normal.  You will never be normal again.  I won't either.  But when it's working.  Ya... I guess I feel normal.  I just don't think about it.  Normal... Abnormal.
Just my opinion. Whether it was any help?  Hope so.
Good luck with any decision you make.  If you are happy and perfectly happy bagging it.  Keep it.  If it's not broke.  You know... I know I am flip flopping but if you are happy and feel normal with the bag.. Keep it
If you love it keep it.  Don't put yourself through all the pain and such. 
Richard

I've had my pouch for 29 years.  I have never had pouchitis.  I can hold it fine and have never had an issue with incontinence. My pouch recovery did not take years.  I was afraid too, my poor butt was just so happy to not have to poop anymore I wasn't sure about having my takedown either.  Best decision ever, I have never regretted it.  Decisions made out of fear aren't always the best ) Whatever you decide, best wishes!

When it was time for my takedown (after a year with an ileostomy) I actually cried on the operating table.  My surgeon told me I could change my mind and not go through with the takedown.  I chose to go ahead even though I really loved my ileostomy.  That was in 2002.  I have never regretted my decision.  I'm quite a bit older than you are but I understand the fear of trading the known for the unknown.  It will be an adventure!  I think you will always "wonder" if you have made the right choice if you decide not to go forward with the J-pouch creation, etc.  Either way, continue to think about the pros and cons of both options.  Then, go for "it"!  Set a deadline for yourself!  Best wishes!

Hi Megan,

 

I was in a similar situation as you. I had my colon removed as an emergency. I was to ill to even consider a j-pouch at that point (the goal at the time was just "get the colon out so you don't die and we'll worry about the rest later" so there was no time for such decisions). My rectum was left intact, though it was still diseased and would have to come out eventually, so I knew I'd need more surgery regardless. But I had been so ill and had such a complicated recovery from my initial colectomy (severe weight loss, ileus, obstruction, hyopkalemia and arrhythmia, TPN, extended hospitalization, NPO except ice chips for 3 weeks, and motility issues), so that when my ostomy was finally functioning and I was back on my feet, the idea of having MORE lifechanging surgery and going through another potentially complicated recovery process was too much for me. My ostomy was working, so why change it? I had also read a lot of negative things about j-pouches (and even my former GI told me that having a j-pouch was just "trading one disease for another" - meaning pouchitis), so I was very reluctant. However, I did see 2 surgeons and tried to get as much information as possible. Even though I was handling the ostomy just fine, I was only 27, single and previously lived a very active lifestyle. I decided I at least owed myself a chance to have "the most normal life possible." Finally, after 2.5 years (and some convincing from my current surgeon) I ended up having surgery for the j-pouch. I haven't looked back.  It was a long recovery, and are bumps along the way and it's not perfect, but having a pouch has been extremely liberating for me. I'm a very active person. I work full time, run, do yoga, and horseback ride twice per week.  There can be off days, but most of the time I don't give my pouch a second thought.   It has exceeded my expectations in terms of overall functioning. My only regret now was that I wish I had done it sooner!

 

At the end of the day, the decision is up to you, but I think it's important to hear all sides of the story. If you are happy with the ostomy, there is no reason you can't continue with it. For many people, they are happy with that outcome and don't want to pursue a pouch.  But if you would like a chance at at least living  "bag free," then it's certainly an option that you should seriously consider. I would recommend perhaps getting the opinion of more than one surgeon, and asking the surgeon if you could talk to some of his/her former patients for a firsthand experience.