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Hello All,

 

I am new here so excuse me if I am writing in the wrong place.

 

I am considering a J-pouch surgery. I am a college student and have had an ileostomy since I was 13 ( I am now 19). My doctor never thought I was up for a surgery because he diagnosed as Crohn's, but many are saying they think I have UC and should go for a surgery. I am very comfortable w my ostomy, can eat whatever I want, and don't really miss the 20 times a day bathroom run, but on the other hand I would love to be a normal teen who can go to the beach and be sexually active, etc. 

 

So I am obviously very nervous at the idea of a surgery but very eager as well.  I am wondering a few things:

 

How long was it for you guys to recover to the point where you were semi-comfortable and confident that you would not have an accident and back to your somewhat normal self? I am considering taking a spring semester off so i can have a full 9 months to make sure everything is under control. Is that too much time or not enough?

 

Is odor and flatulence a problem? For those of you that have had an ostomy you know that it can smell and produce a lot of gas. How do you combat this?

 

Finally, I just want to hear if you all generally recommend it. Essentially, do you think I should risk my very stable ostomy life for a j pouch? Overall, once it is under control in the end, is it worth it?

 

Thanks!

Willie

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Originally Posted by WillieS:

How long was it for you guys to recover to the point where you were semi-comfortable and confident that you would not have an accident and back to your somewhat normal self? I am considering taking a spring semester off so i can have a full 9 months to make sure everything is under control. Is that too much time or not enough?

 

Is odor and flatulence a problem? For those of you that have had an ostomy you know that it can smell and produce a lot of gas. How do you combat this?

 

Finally, I just want to hear if you all generally recommend it. Essentially, do you think I should risk my very stable ostomy life for a j pouch? Overall, once it is under control in the end, is it worth it?

 

Willie.   As far as recovery, I'm 54 and 5 weeks ago had my "takedown" and I was pretty darn comfortable after about three weeks -- I think your full nine months is MORE than enough, as long as all is going well. You are young and that may also help you in recovery!  At 5 weeks I no longer count my bathroom trips and it's probably max six all day with no urgency (probably less than I emptied my ileostomy!)  Now, EACH person is different, so be aware.

 

I do not have an odor or flatulence problems at all.  Frankly not sure if I smelled too much even with the ostomy, other than the bathroom. I think with a j-pouch the smell is reduced for some reason?

 

As far as "risking your stable ostomy life," the great news is you can always go back to an ostomy!   As Jan indicated, if you're a good candidate, I'd say go for it, too.  While I know there are lots of great surgeons out there I would not risk getting a j-pouch with ANY surgeon but the BEST available.  Those on this board can point you to some others, but Dr. Remzi at Cleveland Clinic has probably done hundreds and hundreds and hundreds of J-pouches, and a surgeon's experience could be the difference maker, IMHO.  Get it done ONCE and get it done RIGHT.

 

As you get older, getting a J-pouch becomes more and more questionable for lots of reasons, but at 19, as long as you don't have Crone's I think it's a no-brainer! Best wishes.

 

Willie, just an addendum, I assume you'd need a two-stage pouch -- first to make a pouch out of small intestine, and the second, the takedown.  So if you have nine months, the first 3 months would need to be the approximate waiting time after the first surgery .. pretty much still giving you plenty of time to recover within nine months form your takedown.

 

 

I am very happy with my j pouch and I recommend it.  It's hard to say when when you'd be "back to normal" after surgery since everyone seems to recover differently from this procedure. But for me start to finish (two surgeries) it was four months and I was back to my life as usual. So I would say 9 months is plenty of time.  Having said all that.....if you are perfectly content with your ileostomy  (I was not)  then think long and hard about it. Good luck with your decision!

i would definitely allow for the 9 months, you can always register for classes if you feel better before the semester starts.  hope for the best, plan for the worst.

 

knklhead's experience leans more to the exception and not the rule. the vast majority of people take much longer than 3 weeks for the pouch to adapt and to return to "normalcy," the perception of which can be quite different for a 20 year old versus someone who is 30, 40, 50, 60, etc...  

 

for example, the rectal leakage during exercise mentioned by knklhead in a previous post is far from what most consider "normal"

 

at 32 years old it took me 9 months+ from takedown surgery to feel like i could engage in "normal" life (can be much different depending on lifestyle and age).  

 

results and side effects can also differ substantially between males and females, due mainly to differences in physiology (shallow vs. deep pelvis, taller average height, etc)

 

jan dollar, i have no rectum and a j-pouch, so i'm not sure what you mean about it "not being possible without it."

 

most surgeons will say to allow for up to year for pouch to adapt, and any side effects like pouchitis, strictures, blockages, issues with surgeries etc, can increase the length of recovery process.

 

not trying to be a downer, just realistic. if you're well adapted and healthy with your ostomy, think long and hard just like mgmt10 said.  there were months where i considered reversal back to ostomy, but now, almost 1 year after takedown, i think i'll hold onto this j-pouch for a bit longer

 

 

Lance, good input.  And I agree 100%.  Now, having had a good "recent" takedown, I can't overlook the fact that I've had two previous "two-step"  takedowns that were very problematic, about five surgeries -- hence the reason I ended up at Cleveland Clinic.  In all, it's taken me almost exactly 5 years of surgeries, redos, three ileos to get where I am now!

 

And discussing my progress from the last surgery, it was noted by Cleveland Clinic that where I am now is a reasonable expectation for a year out ...   

I had my first surgery January 10, 1991, takedown on May 15, 1991, and was commuting to nursing school (full time) by September 1991, and soon after also added working 24 hours a week at a pizza joint.  Things got better for me pretty quickly after each surgery. I was being pretty "normal" about 2 months post op each one. 

 

I had youth on my side then. I turned 20 on June 6, 1991. I think that was helpful for me. 

 

Lance, pretty sure what Jan means is if with an ostomy they "closed" your anus (completely removed everything there, and gave what some call a "Barbie Butt"),  you can't have a Jpouch formed after that.  If they left sphincters and some plumbing, you might.

Last edited by rachelraven

Willie, if your anal sphincter is no longer present, your options to continuing with an ileostomy are the k pouch and the BCIR. These procedures are similar in that the surgeon creates an internal pouch (similar to a j pouch) that is emptied 3-5 times a day with a plastic catheter.  The stoma is located below the belt line, is button hole size and does not need an external bag. There would be no problem being a “normal teen” including swimming, sports and a normal sex life.  These procedures entail only one hospital stay and I was doing most of my usual activities four months after my BCIR surgery. A significant percentage of k pouches and BCIR’s are performed on people who desire conversion from ileostomies that are problematic or to improve their quality of life and they have a high patient satisfaction.  As with any surgery, there are chances for complications that you should be aware of before making your decision.  Best of luck with whatever you decide to do.

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