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Reply to "Questions questions questions!"

I think it's also important to understand that this site is mainly all j-pouchers.  People that chose the pouch over the bag and therefore are anti-bag.  It would be a good idea to google other forums of people who have an ileostomy and what their stories are.  You should get an unbiased view of all the pros and cons.  How much of your life are you willing to dedicate to retraining yourself to use your bowels (8 to 10xs a day in the beginning and later 4 to 6 times)?  Go through 3 surgeries?  2 of which are major and with 4 to 8 week recovery?  Also, how skilled is your surgeon?  How many of these operations has he/she done?  Patients should not only ask what the success rate is of having a j-pouch but what the success rate is of those having had the surgery by that surgeon.  It matters a lot.  

I can honestly say that I hated the thought of an ileostomy when I was 20 years old.  I couldn't imagine myself with a bag on the side of my stomach and when I got it in the first stage I did not like it one bit, but what I did like was that I was finally starting to feel better.  There was finally some normalcy back in my life.  And I figured that the j-pouch would be the same.  But again the thing I did not know or realize at the time was that the small intestine was never meant to be a reservoir.  By design it is meant to expel waste.  And when you have scar tissue, which all of us have from the construction of the pouch, you develop strictures and narrowing of the GI, which makes it more difficult to empty the pouch, bacteria begins to build and inflammation can result.  That is what is believed to be the cause of pouchitis.

I have suffered for the past 16 years trying to understand why I continuously became sick, anemic, on medication, bottles of antibiotics... I think when we have UC we would take just about any other scenario other than that pain.  And when you are sick for such a long time your body learns to adjust and the pain of things like pouchitis and other complications seem manageable.  

But I realized I don't have to continue on suffering because of some body image that I want to uphold.  At least for me that was the reason why I chose the pouch.  I was scared of the not having the body I recognized looking back at me in the mirror.  And what my friends might say.  How it would effect my relationships, etc.  I was scared.  That's why I choose the pouch.  

And I know now that if I had chosen the ileostomy my life would be completely different, in a positive way.  I would have had my health back in 4 to 8 weeks and it would have taken a few month to get used to it but I know that I would have.  When you feel healthy, body image becomes secondary.  And places like this helps with being able to share thoughts and fears and whatever kind of issues.

It would have been 1 surgery, and I would've been able to get back to my life.  

But don't listen to just me, and don't just listen to someone who says, "get the pouch!".  This is a life decision.  Research as much as you can about this.  The great thing is you have an incredible amount of information to make an educated decision on what is best for you.  

Again, best of luck!

 

Last edited by JoelSmith
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