J pouch surgeries-timeline

Generally, the second step of a two step surgery....the actual re-connection (takedown) can take place around two-three months or so after the colectomy.  Not sure about the three step timeline.  However, some of us choose to live with the temporary ileostomy longer than the two/three months.  I waited a full year for a couple of reasons. One, it was more convenient to have the surgeries during the summer when I was off work.  I was a teacher at the time.  Also, I finally felt healthy with the ileostomy and I was in no hurry to venture into the unknown life of having a working J-pouch!  It is now twelve years later and I am glad I made the decision to wait the full year.  One, my J-pouch was well healed and secondly, I now know that if I ever wanted or needed to go back to having an ileostomy, I would not be hesitant to do so.  Of course, there are some of us out there who had a one step procedure and have done quite well with it.  I wasn't a candidate for having it done in one step.

Three to six months depending on how you heal etc.  my son's first take down was 3 months, but we had a boat load of complications with a month or so after so in March they put him back on the ostomy for six to eight months.  he has a micro tear in the pounch, they can't find it but they found the abscess and fistulia.  Its complicated.

 

good luck, hope you feel better quickly.

Thanks!  I am wanting this to be done and over soon.  I do need to have it all done prior to the end of the year for insurance purposes and because I cannot stand the bag, I loathe it with every fiber of my being.  I also have an open wound where the rectal stub blowout was, I have bowel and blood constantly oozing from that wound.  I have to change the dressing on that twice a day, minimum.  I had to have the colon removed, the alternative at that point was death.  But, I'm having a hard time coming to terms with all of it.  An ostomy nurse asked me if I'd named my stoma yet.  If I name it, it gives it permanency, so to speak.  I hate it anyway!
I just want it all to be over.  The only fear I'm feeling is that it sounds as if the 2nd surgery comes with an excruciating amount of pain!  Oh, and the anal leaking and incontinance. That freaks me out!  I just hope the next surgery will be in July, the first was in March. Will that be enough time?

Nora, you sound like my son!  He was 23 at his first surgery.  He did not handle the ostomy well at all.  When he found out it was coming back, I must say, he handled the news well. It was done in March.  This time, I said to him and I'll say it to you.  Don't let this define you.  It is not who you are.  You can do everything you did before.  I even got him to go to Disney World in May for 6 days.  He is doing a million times better this time around.  He changes it by himself.  Last year, I had to do it.  It is not the worst thing in the world look at it that way.  I think the j-pounch is worse!  He was running to the bathroom all the time, and never got any sleep.  So find a silver lining and be grateful for it.  I made Jeffrey do that, and thank God, it worked for him.  The silver lining may be that your alive, you don't get consipated, or maybe you are sleeping better.  Find something, but don't let it define you.  Everyone hates the darn thing, it is annoying, I'll agree.  But it is your new reality, unfortunately.  My 92 year old father just can back from Europe and he has had a permenant ostomy for 40 years.  He still complains about it occasionally, but he can do what ever he wants, even travel abroad!  Acceptance is hard, but once you accept the situation, you will feel a whole lot better.  I noticed that with Jeffrey.  Once he accepted that it had to come back, he has handled the whole lousy situation amazingly.  And you will too!  Have faith, think positively and get healthy.  That's the most important, getting healthy!  Good luck!  

 

I feel your pain.  I had a kink too and had to be opened up to find it.  I was in excruciating pain for 16 hours while they looked for it and gave up and put me in surgery.  That was painful.  Two days later I was bleeding internally and had to be opened again.  I hated the bag.  Mostly because I was so sick and really didn't have time to even deal with it.  I only had it less than a month because they took it off and hooked my pouch up after the kink.
My experience was not very smooth with the removal and such.  I would have liked it to be.  I think my recovery would have been quicker having the bag for a few months as my pouch healed but it was put to use fairly soon.  I don't think it was ready.
Good luck to you.

Thank you guys!  I'm one of those people who cannot deal with human bodily fluids, so the bag is taking its toll on me, as well as the open wound that oozes blood and bowel.  And, they both reek, I gag from the smells.  Just the way I am.  But animals, that's way different, animal bodily fluids don't bother me in the least, strange eh?
Anyway, I'm kind of freaked out now worrying if the 2nd surgery will be way more painful then the 1st and the fear of pooping my pants in public.
No one mentioned things like Depends underwear at night and such, has anyone tried them?  Do they work?
I had the colon removed 3/17/15, do you think I'll have the 2nd surgery in July?
And, since I'm new to all this, there's still some lingo I'm not familiar with.  What's a takedown?

Nora, I agree with you about body fluids, but I had to deal,with it because my son wouldn't haha!  Dogs, no problem.  I pick up poop, throw up and all sorts of stuff, no problem.  But seriously, the take down is the connect you to the j-pouch.  It is a shorter surgery, about 2-3 hours but just as painful.  In the first few weeks or so, it can be disasterous.  Definitely invest in depends.  You will poop at lot, so be careful what you eat.  You may or may it be up a lot at night.  Small meals are helpful.  Your body is just getting used to its new reality and you are too.  My son was going about 8-10 times a day, and it was difficult.  You spend a lot of time in the bathroom.  But you have a new pouch!  It takes time to get used to it and for it to learn to function.  Be careful what you eat, certain foods will get things going, it's different for everyone, and I would suggest don't eat after 4pm if you don't want to be up all night.  That's what Jeffrey does lately, but he has a stoma right now.  I don't know when he will have his takedown.  We have had a huge amount of complications and have to switch where we were being treated, so who knows what the next guy will do!

 

hang in there, relax.  And breath!  This too shall pass.

 

Jeffsmom - takedown was NOT "just as painful" for me. Takedown surgery was a breeze. Of course, my initial surgery (colectomy, J pouch creation, loop ileostomy) was done during the days of open surgery. My scar is 12"+ long from that surgery.  All the takedown was was a reconnect and tuck in of the small bowel. He closed my stoma scar as well. 

 

My takedown wasn't "disastrous" ever, either. Yes, I went to the bathroom a lot, at first, but I could defer going. My surgeon encouraged me not to run to the bathroom at every urge, but to try to defer going, to allow the pouch to begin to stretch and hold more. I Kegel'd ALL the time, between surgeries and after takedown. Went a bit slow with food at first, but soon thereafter was eating normally.  I only had to wear a peri pad at night for a bit - I was continent pretty quickly.  I was back at it in nursing school in 4 months; I didn't have to hover at home for long. 

 

**Remember**, this site is where folks with problems come to... But not all J pouchers have problems. I really honestly had it easy; I quit having any nighttime seepage pretty fast, and unless I was indiscriminate with food/drink after 9pm, I rarely woke up at night.  I rarely do now at all.  I never "counted" my BMs, because honestly, every time I peed, I'd just empty, too.  I settled around 4-6.  

 

And FWIW, my between time of initial surgery to takedown was 4 months. My surgeon said when the mucus discharge from the pouch (out the bottom) slowed down, that was the sign I'd be ready, and 4 months was just right for me. 

 

Rachel, that's wonderful that your surgery was a breeze!  You don't know how lucky you are.  What I wrote about was our experience.  nothing about this has been easy.  It's been one complication after another and they keep getting worse.  Several other people commented on this site that their surgeries where not great either.  But everyone has a differeret experience.  Ours was just horrible.  Maybe the next surgery will be better, I sure hope so.

This whole J-pouch experience is an adventure......whether we want it to be, or not!  For some of us, it is a positive "trip".  For others, more challenging.  The result, whatever it is, is the "NEW US".  Before my surgery I worked with (taught) severely disabled children, some of whom had colostomies.  I couldn't even look at their "baggies" let alone change them.  We had a medical support staff to do all of that.......thank God!  Ironically, I developed ulcerative colitis which was not controlled at all medically.  So......surgery here I came!  I then had my own "baggie" to deal with!  I chose to handle all of this like an adventure and ended up having the trip of my life where I willingly helped others deal with facing life with an ileostomy and then a reconnected elimination system!  I didn't even want to give up my ileostomy and kept it for a year.  It has now been 12 years since my first surgery and my J-pouch is just fine.......not perfect, but it works for me.  I eat and drink whatever I want whenever I want.  I don't take any meds for my elimination system unless I develop pouchitis......which I seem to do every few years.  Thank God for Flagyl.......as much as I hate to have to give up my daily martini while on it!  From time to time I do experience butt burn......love spicy food......but know that once the culprit food is out of me, voila....the butt burn is gone!  Small price for me to pay.  Slather on the butt cream!  Best wishes! 

I do hope you guys have some easier travels, Jeffsmom. But honestly, I do think a great portion of J poachers really don't have awful surgical paths. It's just here, on this site, many cluster.

We need a balance of expectations, for newbies. Not everyone's adventure will be easy, and often they're just a new "different," but some trips are relatively uneventful. Mine was. And many will be.

FWIW, I had Colon removed Mid July 2014 and takedown Mid October 2014 (aged 60). The surgery was the standard cut from pubis to breastbone-ish with a loop ileostomy right hand side. I can honestly say there wasn't much pain (much less than I was anticipating, which in and of itself is a major worry). Worst was the back pain after 5.5 hours surgery being twisted every which way but loose. Healed quickly. Out of hospital 2.5 Weeks

 

I had issues with the bag leaking until I got the Convex type (which look like they wouldn't seal in a million years, but actually performed admirably).  Hated the bag, would have serious issues if I had to go back (but that's me).

 

Takedown was equally uneventful, out of hospital in 2.5 days. Frequency of BMs is an issue.  I take metamucil at least twice a day (if I don't BMs are fluid). If I don't eat till the evening meal, I have maybe one BM during the day (and that's generally passing the metamucil). Have more after the evening meal and am up at least twice during the night. Yes there are leaks, but not unmanageable, and not worth wearing anything special (although I sleep on a towel just in case). I am assuming it gets progressively better.  Can travel without restriction and eat (almost) anything. I note the passage of foodstuffs is 5.5 hours (I just eat something spicy to prove it).

 

Look, metamucil (for me) is essential. Use hydrsolve cream (1% cortizone W/W). This gets rid of any itch/burning quickly. If you don't want to have a BM during the day, don't eat - sounds harsh, but it's simple (for me at least).

 

One thing I didn't realise that when your colon is removed the J-Pouch is manufactured and connected (just bypassed with the loop ileostomey). So the takedown surgery is only closing the hole in your small intestine, stuffing it back in and closing the hole in your stomach wall, by comparison, quite minor. The key is that the JPouch is ready....

 

This is what happened with me, everyone is different.  Bottom line, not perfect, but way better than before (and bags are not for me).