Hello everyone.
I had the reversal surgery done in February of this year to remove the external bag and hook up the pouch. It's been a roller coaster ever since, with pain and discomfort, and infections. Has anyone else experienced this? I feel like after 5 months, things should be starting to be as normal as they will ever be. Any info would be greatly appreciated.
Thank you in advance
Scott
I don't have any experience with this, but I am sorry you are going through this. What does your surgeon say?
So sorry, hopefully someone that's been through the surgery will jump on with answers.
This is a remarkable community of 40,830 members.
You will get real advice from fellow ostomates who truly understand you - things you won't find in the books.
And it's not all about ostomy - there is friendship and relationships too.
Privacy is very important - your profile is not visible to the outside world.
Bill
MEETANOSTOMATE REVIEW.
I’d like to write a nice review
that might express something quite new.
Then I read previous points of view,
which said the things I wanted to.
I would endorse the things I’ve read
about what other folks have said,
for these are the benefits and things
that joining a site like this can bring.
When I was an initiate, (novice)
it seemed to be appropriate
to express myself in rhyme
as this is how I spend my time.
When contemplating what to write
with contributing to this site,
it seemed to me, my ostomy
could be expressed in poetry.
Thus, when I had something to say,
a rhyme, for me seemed the best way,
for rhymes can often capture stuff
that prose don’t capture quite enough.
I do appreciate the way,
this site lets people have their say
in whatever mode they will
about the things that make them ill.
There are not many forums for
discussing stuff most folks abhor.
So, this site fulfils a small niche,
where angst and problems can unleash.
Where raw emotions can decant,
so, folks feel free to have a rant,
and we can all associate
is something I appreciate.
B. Withers 2021
I had a j-pouch for 18 years, had a 5-6 year period that was okay but lots of ups and downs until I grew a fistula that attached to my lower vertebrae and led to chronic osteomyelitis, and I have a permanent ileostomy now. I've heard of a few long-term j-pouch success stories, but not many. Do your own research and get to know any warning signs for problems. It is still early for you, so it could get better, and I hope it does for you.
Thank you so much for responding, Bob. I truly appreciate your feedback.
I'm currently waiting for a second opinion at the University of Pennsylvania.
I will absolutely continue to journal how I'm feeling, etc.
Thank you again.
Scott
Ohhhh Scott!!!
I hate that for you! When my large colon was removed, a J-pouch was placed. They said it may last 5 years. It did. Exactly. The entire 5 years were awful!
I was always emaciated, in pain, dangerously infected, dehydrated…. Ended with the small intestine twisting around the J-pouch, becoming necrotic and nearly dying. Outcome = ileostomy. Which should have been done from the beginning.
I hope you don't put up with it very long. It can go on for years until a crisis occurs.
G-Day Scott,
I also had a J-Pouch for 18 years after having my colon removed. But I had 18 years of hell, always looking for a toilet and lots of pain. I now have what I should have gotten all those years ago: a wonderful ileostomy, and the last 4 years have been a breeze.
Good luck.
Regards, IGGIE