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Any thoughts about reversals?

Posted by margie, on Mon Aug 09, 2010 4:55 am
any thoughts or suggesetions about reversals. i had a colonostomy 6 weeks ago. most of the colon was taken out but they left in the rectum in case i decide to try a j pouch.  i've read some good and bad experiences. i wonder as i am doing well, so far, knock wood, if i should leave well enough alone.
Reply by lottagelady, on Mon Aug 09, 2010 5:03 am
Hi Margie - there have been quite a few posts on this subject recently, suggest you 'search the forum'  for reversal and j-pouch and you should come up with quite a lot!
Welcome!
Rach xx
Reply by ostomyvisitor, on Mon Aug 09, 2010 9:43 am
Hey Margie,

This is Larry from New Jersey. I have a support group for us Ostomates.

There are good outcomes with reversals and not-so-good outcomes. Our
group has had a number of requests on reversals... The best thing is to do
your research. Each colostomy or ileostomy is different as is each individual.

We have five members who went through reversals 3 out of the five have
had no problems over the past few (3) years.  The others have had some
"situations." One is in a New York hospital as I write this... She called me
yesterday to say she may not be to our meeting.

As I and probably more people will tell you its a personal thing. I have had
my colostomy going on 10 years with no problems -- In the words of that
great baseball catcher, Yogi Berra, "If it ain't broke, don't fix it!"

Larry
AKA Ostomyvisitor
Reply by Pinky, on Mon Aug 09, 2010 3:16 pm
Hi Margie - Rach is right - this seems to be the #1 question on people's minds - whether to have a reversal.  I had a temporary colostomy for 7 months in 2003 - reversed in 2004 - an OK 2 years - then absolute misery for 3 years (pain, accidents) until in Feb 2009 I had a permanent colostomy placed.

But I wouldn't call a J-pouch a reversal.  I was willing to try a J-pouch but didn't have the room for one due to radiation and surgical scarring. I still have a portion of my rectum too.  I thank my surgeon every day (in my mind) for leaving that because when I get "phantom" pain there I can use Anusol cortisone suppositories (and someone else on the website mentioned Cortafoam, which is really good, but expensive).

I would never try to talk someone out of trying a reversal or J-pouch.  I think just about anything is worth a try...but know that everyone has to go through a long period of adjustment (physically) to ostomy alternatives - whereas with an ostomy the adjustment is more often psychological and hits a few months down the road.  (Hope that made sense).

Good luck on your decision!  You'll get a lot of help here.     Pam   Smile
Reply by junopete, on Tue Aug 10, 2010 10:14 pm
Margie

I have a J pouch and are probably more well read on the subject than most.

The success of the J pouch surgery mainly depends on two conditions.  The condition of your rectum and what was the original cause for the removal of the colon.

Be advised there are several J pouch types out there.

One of the problems is due to your own body uniqueness, until after it is done a person simply does not know how they will react to it.

Whatever you decide, pick your surgeon very very carefully.  Get the one that takes on the very hard cases that most will not attempt.  Someone with loads of experience.

Don't be afraid to ask lots of questions.  Do tons of reading on everything you can find on the subject.  You have to be proactive.

Good luck
Rick.....
Reply by margie, on Wed Aug 11, 2010 5:35 pm
Thanks for your replies-it helped. i know i have  to do my research but it helps to read what you have experienced.  i think a lot of it is coming to know my own feelings and i expect they will change with time.
Reply by margie, on Wed Aug 11, 2010 5:46 pm
thanks for your reply- i will check out the forums
marjorie
Reply by janice, on Sat Aug 14, 2010 1:42 am
where in jersey is your support group?  I live in  jersey.
Reply by Ragu444, on Wed Aug 18, 2010 10:20 pm
There should be a lot of thought behind this and you should get a second opinion. This is a life changing  choice  so you need to really think it out.
Reply by gutenberg, on Thu Aug 19, 2010 2:50 pm
Hi there Margie, you've posted a really diverse question, one which I had to make 7 years ago and my surgeon was ready to help with any question I wanted to ask except when I asked him what he thought I should do, and his answer was you can ask any and all questions and I will gladly help, but this is a decision you will have to make all on your own.So I have an ileostomy and asked would I have the same kind of output as I was having with my pouch. He said it was a good question, but the answer was yes so it was easy to make the decision, i could imagine running to the bathroom with constant diarrhea and having a burnt rectum in a short while, but as we are all so different it makes one feel a sour topic, being unable to try to help out a fellow ostimate. Do a lot of research before making this giant step, meanwhile we'll be wishing you all the best in your endeavor, Ed
Reply by Franicaa, on Sat Aug 21, 2010 7:58 am
Margie,

I've just recently got a J-Pouch myself with a loop ileostomy to let it all heal.
Unlike you, I had my entire colon removed due to ulcerative colitis and I was told by the surgeon that with Crohn's patients 9 times out of 10 the patient will develop pouchitis (which is easily controlled with antibiotics and most of the time resolved) but with UC patients like me, it's hard to tell whether the pouch will work and if any problems will arise from it.

Personally pouchitis doesn't phase me because I was so ill before my colectomy. Another thing that can cause problems is personal healing. I have a very very weak immune system so after my j-pouch surgery I got a small absess and I'm still not much better (4 weeks after my surgery). Having the absess also meant that 2 weeks after my big surgery I had to undergo keyhole surgery to clear everything out, and right now I still don't know if the j-pouch will work! Things are looking good at the moment, and it's different for everyone! When I made my choice I weighed up the pro's and con's and made sure I had read stories from successful and unsuccessful surgeries.

If you want to know anymore about the procedure itself or how I'm healing comment on one of my blogs, mail me or find me in the chat room, I hope this helps Smile please don't hesitate to ask me anything!

Fran Smile x
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