Concerns after J Pouch construction

Nora, my son Jeffrey went through this.  His story is all over this forum because it has been such a long, exhausting road.  He had is colonectomy June 2014.  Take down Sept 2014.  He too developed a small tear in his pouch.  he was in lots of pain, totally miserable , as you have explained.  In December, they told us he has a golf ball size abscess and in January found the fistula.  He lost about 75 pounds, 120 in total.  If you are not feeling well at this point, do a capsule study and an MRI.  That's how we found my son's problems.  And to add to his problems, no one could find the leak.  In March, they ended up taking him off the j-pouch and giving him the ostomy back.  He had a hard time with il ostomy  the first time around, wanted nothing to do with it, I had to take care of him and it.  But this time around he has been much better.  He is also feeling so much better.  But we have had other complications, etc.  we ended up having to change medical teams are are now in NYC.  Jeffrey still has the ostomy and we are now waiting to see if the leak has closed up so he can go back n his j-pouch.  Best of luck.

Your second sentence shouldn't be overlooked, "due to a small pouch leak."  Frankly I think too many surgeons look upon a "small leak" as if it's normal and sort of hope it heals itself.  I welcome comments from those on the board with a history of "small leaks" healing themselves.  I am very dubious.   Even a small leak is not good.  That's my opinion after having two sets of surgeries (with leaks) and finally a pouch redo that seems to be working pretty well, finally.  I know it's weird, but I have never been so happy to pass gas before -- a sign, I think, of a non-leaking pouch.

Now, to your feeling tired issue, I am two months out and complained that I'm not yet strong enough to take on the world.  My surgeon says to be patient, which I can understand.  I hope you feel better soon.

I agree. I had a small leak that did heal. So small that it was not known until I developed a huge presacral abscess and a fever of 105. In some ways I consider myself lucky because this prompted definitive treatment a month post op (not just antibiotics). Others here wound up with simmering symptoms for years until it was truly dealt with.

My point? I am not really sure, but if you keep having the nagging feeling that something is wrong, keep bugging your doctor. It is hard to find that balance though. None of us have anything to compare to in order to know what is "normal" and what isn't. You can make yourself crazy with it. 

Jan