Should I take my gastrostomy out?

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Joined
Apr 30, 2011
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The story so far: diagnosed with Crohn's disease at 13, gastrostomy installed at 16. Tube feeding has been by far the most effective treatment for me. For most of the 20 years I have had this disease, I have been in remission.

So now I'm 33, and I haven't tube-fed regularly in years. Having spent the last decade on low doses of Asacol & Azathiprine, and in good health, I am being pushed to remove the tube by both doctor and family.

But it has been my security blanket; I am not getting any younger, and my luck is going to run out at some point. At some point, I feel like I will need to lean on this treatment again to save me.

And once it's out, it's out. Unless I go through the surgery again. If I had to have it reinstalled, I would be in trouble to begin with--could I handle the surgery on top of whatever would compel me to go through it again?

I'm not the type of person to cling to things just to make me feel safer--if something doesn't serve a purpose, i remove it. life is too short for clutter and worry.

But this is a big call for me, one that I need help with. Help that I think can only come from people who have the diseases we have.

What would you do?
 
Having a gastrostomy fitted nowadays is usually with an endoscopy, a reasonably straight forward procedure. Done as a day case. So if you took it out , it would not be the end of the world IF you needed it again. Do you have your tube replaced regularly?
 
Thanks for the quick response, littlemissh.

I don't have it replaced as often as i should, that's for sure. So you've definitely called me out there.

And I remember that the surgery only took a day, but I couldn't sneeze for a month afterward without doubling over. Maybe I am tougher now, but I am really hung up on the sunk cost of having this thing in already.

All of the words I can muster lead me logically to conclude that it should come out--I think I just need permission to do the scary thing.
 
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