Considering pouch redo vs permanent ileostomy

Sean, I think the question for your doctors is whether they have any data about the recurrence rate of antibiotic-refractory pouchitis after a re-do. If antibiotics stopped working for me I’d try biologics, which work for plenty of folks. But it’s too late for a prolapsed pouch, and I’d want to know how likely a re-do is to leave you in the same situation regarding pouchitis, with uncertain medication options.

If I were you, I would do a pouch redo, that way down the road you can say, "I tried everything".

Appreciate the input guys.    Leaning toward the redo now as doc feels most of my issues were related to structure with s-pouch and long cuff.     I'm seeing mixed feelings on redos with people posting.    Thanks.

Sean

@seanbo1001 posted:

Appreciate the input guys.    Leaning toward the redo now as doc feels most of my issues were related to structure with s-pouch and long cuff.     I'm seeing mixed feelings on redos with people posting.    Thanks.

Sean

Let us know how everything goes, my prayers are with you

Hi Sean,

I offer my humble opinion as someone who would do almost anything to avoid a permanent oestomy.

having said that, given you’ve stated you are in excellent health, under 60, you could probably handle this major major undertaking.

As they will be removing the old pouch and  taking more of your ileum. I would be consulting with the top surgeons that do this, like a Dr Remzi at NYU.

I hope this works out for you.

I had a redo by Dr Remzi and I'm also on azathioprine otherwise I'd be very sick

I had redo surgery with Dr. Remzi in December and I'm having my takedown in June which will be my 8th surgery. I recommend that you setup a consultation with Dr. Remzi and his team. I would not recommend having redo pouch surgery with anyone but him. He has done the most pouch and redopouch surgeries in the world lapping anyone else.

Pouches are such a small subspecialty and have a lot of complications, and most colorectal surgeons should not be performing them.

Please consult with Dr. Remzi. Please message me directly and I'm happy to provide you more information and my thoughts.

@Andreita posted:

I had a redo by Dr Remzi and I'm also on azathioprine otherwise I'd be very sick

I am happy to see you back!!! I am glad you are okay!!!

What are you taking Azathioprine for??? Crohns???

Thank you so much for your input guys. My situation with a blocked defecation is so severe I need to do something rather quickly. I have found an excellent surgeon at UCSD in San Diego named Samuel eisenstein who will do the surgery. I'm reading nothing but excellent reviews about him. And he has done lots of these surgeries. Also I am not afraid to go back to an ileostomy if things don't work out well enough.

Have you tried emptying your pouch using a bulb syringe and an appropriate catheter? That could get you some relief in the meantime, and perhaps reduce the urgency.

Thank you so much for your advice once  again Scott.   Unfortunately there are a few issues with attempting that. First, I have a rectocele where stool is getting trapped. Second I have a particularly long cuff which they did with the less common s-pouch way back in the early 80s.  And third the cuff is so inflamed I can't tolerate anything going up there. Thanks again for trying to help.

Sean