Skip to main content

Reply to "Newly diagnosed with FAP facing 2 part surgery"

I did not have FAP, but my ulcerative colitis came on very quickly in April 2015 and by November, I had my first of 3 surgeries, two different ostomies (an end and a loop) over 9 months with the final takedown.  I have done pretty well and find I am able to do most things I did before my j-pouch.  I think my biggest complaint is that I sometimes have leakage, but not a lot and usually because I waited longer than I should have to make a bathroom trip.  There are other minor inconveniences as well.

I have traveled, hiked, and biked with the bag and with the j-pouch.  I would say that I felt pretty good by about the 6 month mark and even better by about a year out.

Be prepared for butt burn after takedown.  I ordered a bidet, a sitz bath and used Calmoseptine for a while.  Other ointments have also been recommended including Ilex paste or baby butt creams.  Keep you fluids up to prevent dehydration and follow initial diet restrictions after your surgeries.  Once you are able to start eating more foods, introduce them slowly.  At this point, two years post takedown, I eat pretty much what I want.  I don't drink any carbonated beverages and don't really miss them.  I usually drink water and coconut water because of the low sugar content and the potassium.  You pretty much learn what you can and cannot tolerate as you go along.

As far as how often you go in a day can vary.  I don't really count it but I believe it to be about 5-6 times in a 24 hour period.  I rarely get up during the night except to pee.  It doesn't interfere with my life.  When on vacations, I bring extra medication, although I recently went for a 4 hour bike ride and forgot to.  There was a bathroom halfway, so it worked out.

I understand that statistically most people do reasonably well with a j-pouch.  It does take a while to adjust to, and you will have a new normal to live with.  Hope all goes well for you.  This is a very good and informative site.  Although, I have no real problems, I have found lots of answers to questions I've had along the way.

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×