Hi! I'm curious how you are doing as of now? My pouch is twisted, but the pain has been better the last couple of weeks. Night time incontinence is ridiculous. I'm scheduled for surgery right after Christmas and I'm scared. Looking for every means possible to get out of it. 

I just don't know if I'm making the right choice in having another surgery.

Amy

Everything has been great since the surgery to untwist my J-Pouch. That was 3 years ago.

I. Still doing great!  Happy lady.

So, I bit the bullet and opted for the surgery. Surgeon warned that if he couldn't untwist the j-pouch, he would need to create another one. If that turned out to not be an option, I would have a permanent ileostomy. After a 10 hour surgery, life threatening blood loss and a j-pouch "plastered" inside of me, I have a permanent ileostomy. Surgeon said even if the new j-pouch would have reached, my sphincter muscles are so weak that I would most likely would have incontinence worse than current. Definitely not my first choice, but ultimately the only way to save my life. Surgery was the 27th of December, the incision became infected and had to be opened up, I feel like death warmed over with the flu now, but am alive.

Kind of wish I had stuck with my very first ileostomy, but I imagine I would have had regrets had I not at least tried. So, here I am.

- Amy 

Amanda T posted:

So, I bit the bullet and opted for the surgery. Surgeon warned that if he couldn't untwist the j-pouch, he would need to create another one. If that turned out to not be an option, I would have a permanent ileostomy. After a 10 hour surgery, life threatening blood loss and a j-pouch "plastered" inside of me, I have a permanent ileostomy. Surgeon said even if the new j-pouch would have reached, my sphincter muscles are so weak that I would most likely would have incontinence worse than current. Definitely not my first choice, but ultimately the only way to save my life. Surgery was the 27th of December, the incision became infected and had to be opened up, I feel like death warmed over with the flu now, but am alive.

Kind of wish I had stuck with my very first ileostomy, but I imagine I would have had regrets had I not at least tried. So, here I am.

- Amy 

How are you doing now Amanda?

I am feeling fantastic, despite the worst recovery period throughout the many surgeries I have had. Kidney infection, blood clots in my lungs, neuropathy of my right leg, and fluids for dehydration. However, I really am feeling great. No more pain, no more Depends, and I can eat pretty much anything I want. Life is grand!

- Amy  

  I was wondering if someone can tell me what the symptoms are of a twisted pouch are?  I had surgery about five years ago, I have a J pouch and about two years ago I had a blockage. I believe it might’ve been from an internal hernia. Last week I blew up like a balloon with a blockage but eventually passed in the hospital and they sent me home now I’m kind of on pins and needles thinking it may happen again ? So any advice y’all can tell me would be great I’m getting ready to go to the virgin islands for a week and God I hope it doesn’t happen again over there

Thanks for all the good advice people. 

Hi Tina, 

Well, we are all different and our pouches react differently but in my experience, a twist (when it came on suddenly) felt like a mule had kicked me in the gut.

I drank a can of diet coke strait up (not the smartest move ever!).  I was house cleaning, bending and twisting) and lay back on the sofa, with my legs up against the back of the sofa and suddenly I was doubled over on the floor screaming. 

I knew what it was even if it had never happened that way before...so, I did not immediately go to the hospital...I gave it 24hrs (not necessarily a smart move on my part...Trust me, you are better off calling someone and not waiting it out).

I took a shot of Gravol, intramuscularly, and tried to get my whole system to calm down. It took 24hrs of hell...me walking, climbing, bending, stretching and rolling around on my pilates ball for it to pass. In the meantime I nearly dehydrated (only one of the dangers)...I couldn't sip or swallow anything without going into massive spasms and throwing up. For me that is the sign of a full blockage or twist...nothing can go in, not even an ice chip.

It released on its own, I hydrated well and stuck to fluids for about 4 days until the aches and pain dissipated. Then went back to life. 

I got regular blockages, especially if I was squatting down a lot, bending or twisting so I had the surgery to remove the site where I had a twist and narrowing.

Things aren't perfect but much better...If I am careful, do not overdo it I am usually fine.

No more chugging full cans of carbonated drinks any longer. 

A regular blockage usually starts out slower, less dramatically for me, but the symptoms are generally the same, bloating, burping, cramping, contractions,  nausea, vomiting...nothing stays down or goes through. 

With a partial blockage, you might have the same symptoms but things actually do go through, just very slowly.

Hope that you are ok.

Sharon

Thank you for your sharing your story Sharon. 

Tinam. I very sorry I didn’t no reply to your post. I don’t got on here often. Did you have a twisted j-pouch?  I hope everything is well with you.