Reply to "Pouch failure"

@Almac posted:

My GI doctor and surgeon have now conferenced and decided that my pouch is failing. They call it dyssynergy. A MRI showed I have no muscle activity operating down there. It’s all just what pushes from my stomach and moves through on it it’s own to evacuate. Before all the tests, the surgeon originally pushed for pelvic floor therapy. But the GI doctor doesn’t feel confident about it. And the surgeon has agreed.  So my options are 

1. Have the pouch removed and go to an ostomy and bag. 
2. Travel to the Cleveland clinic and try for a pouch redo. 
3. Just put up with it for as long as I can stand provided I can get back to any semblance of a normal diet or lifestyle  

I‘ll be 60 next year. I’ve had a hard battle with this pouch now for 30 years. Especially these last 10. Pouchitis. Sepsis. Major pain from antibiotics and gas. At last count 5 blockages and 17 hospital stays in 30 years. I’m tired and still at this moment on a nearly liquid low fiber diet for 7 weeks. I’m single handed keeping the protein shake business afloat. My anxiety is thru the roof and insomnia is killing me. Not to mention what this is doing to my wife. 

And yet, I still can’t make myself make the call to schedule the removal surgery.  No one can make the decision for me.  Advice appreciated but I think I just wanted to vent to some sympathetic souls.  

 

Your last paragraph says it all. 

But what you mentioned above it says alot too. 

Only you can make the decision for removal. 

I had to do the same thing. It took me two years to do it. Make the decision. But I had some of the same issues you had.  And other people to consider dragging them into the mess I was going through. I was 59 when I had my removal. I'll be 64 next month. I made the right decision. Although a very hard decision it ended all. And I do mean all my suffering. I don't regret it to this day.

Now having an ileo is not for everyone. And it's not where I ever thought I would be. But it works and works well. 

I have no issues with it. Not everyone has this well an outcome but I'm in a place I never thought I would be. And it's a good place. 

I sleep well. I am in no pain. Take no drugs. I'm done. I consider it "my" cure. I haven't seen a Dr regarding my ileo in years. That in itself was worth it. Dr appointments. They seemed neverending. I change twice a week. 

Good luck with your decision. It's not so bad on this side. Believe me. I didn't want it either. But it was the best decision I made. 

Richard.