Help: One month out J-Pouch surgery, PAIN, normal CT and blood work

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bagfree
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/26/2010 12:20 AM (GMT -6)   
First post but after googling a storm and not getting very far with testing I seek out your advice.

Long story short: I'm 24, and had my colon removed in August of 2006 after battling UC since 2001. Had step 2 surgery end of January 2010 and then finally completed reattachment April 14, 2010.

The first two weeks I had pain but had energy and felt great and then since then have had continuous pain deep in where the two pieces of intestines were sewn together. So I've been just hydrocodone, imodium and gas-x non stop to no relief. We tried an antispasmoial and that didn't help neither did valium. All my blood work/counts are perfect. Just had a CT scan with barium and IV contrast and the surgeon says it's "perfect".

Don't get me wrong I'm thrilled there is no stricture or adhesions but still no answers.

I have a history of ovarian cysts but I got that checked out and there's nothing there...and all of my pain is right at that site. I'm always uncomfortable but then food (no matter what kind) goes through it's like gas pain x 1000. It just rumbles so strongly and kills. I had my fiance put his hand their yesterday just to feel how strong the vibrations were.

I have lucked out in having a great stoma nurse who believes me and wants to get to the bottom of this and is "going to push my surgeon for more tests to figure this out".

I've tried changing all of my eating habits and all of your usual suspects.
I'm eating fine (6 small meals a day), and I really can't complain...after the first 2 weeks I haven't had any butt burn.

Do ANY of YOU have any ideas? My fiance thinks I need to look into neuro and nerve type things.
I'm just sick of taking pain medicine hour after hour and not getting on with my life.
As my nurse said "this is not normal."

Any and all ideas/suggestions/things to bring up to doc are welcome.

I thank you from the bottom of my heart.

Cass

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/26/2010 8:14 AM (GMT -6)   
Pain this far out and the need to take narcotics to control it, is worth investigating. As a comparison, I never took pain medication after my reversal. Are you taking probiotics?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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