Reply to "Permanent ileo for blockages"

I don't know how long you've had your pouch. 

I had mine for only two years and it never worked right. 

I was in constant pain.  And it was very painful you know where. Had the urge to go 24/7. Never got any sleep. Worked 40 hours a week. Went to work every stinkin day no matter how bad I felt.  That says in itself I'd rather suffer than have an appliance on me.  The thought was terrifying. So like most I put it off and just suffered in silence. My wife wouldn't agree with the silence thing. But outside the house I did. And outside the house was just work. I couldn't go anywhere else but the Dr office.

I've had an appliance for over 4 years now. 

When you get one there is a period of dread. But I had to get over that and fast. Which I did. And once I did I didn't look back. It was "my cure".  

Everything I was going through just stopped. 

No pain. I finally could sleep. Yes sleep. Omgoodness not getting sleep and working 40 hours a week for two years wore me down to where I couldn't take it anymore. 

Having a pouch was worse than the original disease to me. It made it worse. I tried everything to make it work. 

I will never regret what I did. 

Anyone in your position or mine knows when it's time and we are the only one who can make the decision to go to the appliance. It's easy to take care of. At least for me. I'm very fortunate. 

It took me these 4 years to get back to my original weight. 

I just had a Dr appointment and my weight was 174 pounds. I was at the beginning 176. I went down to 128 pounds and looked like a walking skeleton. 

It's a terrible disease. But as my surgeon said to me. 

I can fix you. And she did. I didn't believe her. But she did. 

Nobody wants an appliance.  Nobody!  But I'm living proof there is a normal out here. 

No pain. No blockage. None of that stuff. 

I'm not saying you should. I'm just giving my experience with it. It's not ideal.  It leaks. Once in a great while in my situation. But it only takes five minutes to change. I have to empty it. It's continuous. But it doesn't hurt to poop. And that in itself is worth it. No pain. 

I was after two years in a bad spot. Had I kept my pouch it probably would have taken my life. Slowly. But it was doing it. I was stubborn. Thought I could make it work. Even being rolled into surgery to get it I was having second thoughts. But I put that out of my head. I put myself and my loved ones through enough. 

Getting it was my fourth surgery. The easiest of all of them. 

I've mentioned all of this before in past posts. But I don't like to hear of suffering because someone is afraid (hates) of an appliance. 

No one knows you even have one out in public. And the ones who do forget. They are made so well and easy to put on and use. Just have to find the one that works for you. 

OK. I'm done rambling as I usually do. Sorry. 

I wish you the best. And a great outcome. 

P. S. 

I haven't been to a Dr about my end ileo in over 3 years. I have had zero problems with it.  Just one. A staple that came out. No biggie. But other than that it works well. I worry about it for nothing. 



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