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I'm having my pouch removed this Friday at Cedar Sanai hospital in LA. I had the pouch disconnected 4 years ago, and have had an ostomy ever since. My surgeon did not originally remove the pouch when he did the ostomy surgery because he said it would have been too much to do all at once and would have been a huge undertaking. Apparently I have a large amount of scar tissue from multiple abdominal surgeries, and being that the pouch was made back in 1987, he felt it best to leave the pouch inside of me disconnected. Well with the last scoping of the pouch, the pouch is cracking and falling apart, therefore needs to be removed. I was wondering what to expect with this surgery and recovery. My surgeon mentioned the potential of problems after surgery and healing. I appreciate and admire all of you!
Ann
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Ann, we may have slightly different histories, so different surgical experiences, but I will share mine with you. I had my j-pouch removed, rectum removed, anus sewn closed and perm ileo created almost seven weeks ago. I only had my j-pouch for four years as opposed to your eighteen, but mine had already adhered to my pelvic wall and bladder. The surgery itself may have been more involved for reasons stated, but recovery was really no tougher for me than my first surgery of colon removal and temp end ileo created. Nothing a little Dilaudid and Percocet couldn't take care of!  No major problems after the surgery. My butt was sore at home for a few weeks, so I took Percocet for about three weeks, then extra strength tylenol. I never had trouble sitting. I also had some redness around my stoma from leaking. This went away in about a week.......I was blindsided by the first surgery; this last one was my decision and I was SO ready. I think it will help you to imagine the removal of your "cracking and falling apart" j-pouch. I know it helped me to imagine not being a slave to mine. You'll be okay. PM me anytime.

Lori

Thank you Lori for your reply.  I am now 7 days post surgery, and doing surprisingly well.  My pain is under control, and feeling stronger everyday.  Sitting, as long as I'm on a pillow, has not been a problem for me as well.  I was really concerned about how much pain that would be, but luckily, that hasn't been the case.  I go back to LA on Wednesday to have a post-op visit with my surgeon.  All the best to you.  I'm so glad it's over.

Ann

Ann, glad you're on the healing side of this and you will continue to feel better and stronger. I was concerned about pain, too, mostly about the butt pain, and relieved that it wasn't as bad as I expected. I read as much as I could from people who had already gone through it. The thing that stood out for me was that even those who had pretty major complications from surgery were still glad they had it. I also remember the line posted awhile ago: "the j-pouch rules you; you rule your ileo." I felt so out of control for four years and reading this helped me so much. 

Hi Lori,

What a great quote!  So true, I did feel ruled by the pouch.  One theme for me about having Crohns/UC, is that feeling of having no control over the illness.  That lack of 'control' truly showed up in different areas of my life, such has being a neat freak with my house, because cleaning was something I could control.  It's very interesting, the psychological effects that this physical illness contributes to.  Just during my recovery, I find myself stressing about the clothes piling up for laundry, since I can't carry the clothes down to wash.  My husband thinks it's good for me to let the house go a little bit.  He's actually doing a great job taking over the housework.  I like the idea of 'ruling the ileo'.  : )  I am so happy to have done the surgery.  I feel fantastic, and today, I haven't taken anything except tylenol for pain.  It's only been 11 days since my surgery!  Recovery is going so well!  

How are you feeling?  How long before you started driving again?  I'm definitely feeling the cabin fever.

Haha, I wish one of my side effects was wanting to clean! I know about trying to find control where you can, though. I found myself getting really negative and angry over stupid things before this surgery. I'm not waiting for the other shoe to drop anymore. It is a relief and a blessing. I had some issues with leaking as the swelling in my belly went down. I met with my ostomy nurse yesterday and she saw what was causing them. I will now use a convex appliance and I think that will do the trick. I feel so much stronger now. I actually started driving about week two (without Percocet) because I just needed to get out of the house. Very local stuff. I intentionally had my surgery during the winter because it was easier to be away from my work and because it's naturally a slower time of year. Then, with all the snow, the cabin fever hit.......

Glad you're feeling great!

~Lori

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