Sorry for the delay in updating my situation - ok so I went to see Dr. Flanagan he did an exam and said everything looked good surgically - but was unable to do anything for me. I then went to see the surgeon that my surgeon recommended Dr. Walker still in pain and taking vicodin. We discussed everything and he also did an exam and said everything looked great surgically. He figured that the pain and spasms were caused by levator muscle spasms on my pelvic floor. He gave me a script for nitroglycerin ointment - tried that once I got home - it gave me an awful headache (as he said it might) but didn’t relieve the pain actually felt worse. Called the next morning and he prescribed me valium for the pain. Took that once I got home within a ½ hour I passed out woke up 6 hours later in awful pain took 2 more it did nothing and I was up the rest of the night. So I decided to go back to my medicine I was taking in Dec when I felt ok. So I have been taking 1 vicodin & 1 xifixan in the morning and night. So far so good - I don’t feel great but not in excruciating pain like before. Now I have a constant feeling of pressure on my rectum but no muscle spasms. Sometimes feeling like my butt bone is broken or someone is twisting a knife in my rectum. So now that leads me to believe that I have some sort of infection - but how do you convince your surgeon of that and to do more testing?

CARRIE

Are any of the docs you've seen for this a GI?

no just colon/rectal surgeons.

why not give one a try? My surgeon was pretty clueless about my rectal spasms, just kept saying my spasms will go away by itself. It was time to check in w/ my GI anyhow a couple of months after takedown so i went to see him and now we know I have cuffitis and pouchitis!
Now I am being treated for it.

They work together in the same hospital, which is easier for me, maybe you could see one of your surgeon's GI colleagues?

Thank you - I will give him a call tomorrow morning. Mine work together at the same hospital also.

CARRIE

I had the same problem and the doc's kept saying everything is fine and gave me antidepressants sp? like it was in my head bah got to the point where I was gonna lose hope and figured I would be in pain for ever.

anyhow I tried motrin 800's and all of a sudden pain gone and its been about 2 months wierd because for pain for surgery they did nothing for me doc said I prolly had inflamation there and mortin helps with that.

First off, to all of you that are suffering from pain-I am so sorry. I have been there and know how awful it can be. Carrie, I too had pain that felt at times like a knife was stabbing me in the rectum and pelvic area. I was told it was in my head, that it was muscle spasms, that it was nerve damage. I saw 5 doctors-the top in the county. I had every test under the sun not once but numerous times. Everything looked ok. Don't give up. Pain is not normal. Finally, after I booked an appointment with Dr. Fazio to remove my pouch (due to any other better suggestion) my own surgeon went back in and did an exploratory and found a massive pelvic infection and returning UC in the rectal cuff. I never ran a fever and the UC was not detected cause it was in the middle layers. If your own doctors will not listen just keep going.
Good luck and stay strong.
Susan

Toeberex, any luck yet?

Well finally I'm scheduled for a MRI on 3/25 to figure out what's causing the pain. They think it could be a fluid collection (abcess?) so they want to finally figure out where the fluid is coming from and what it is. They don't want to do anymore abdominal surgeries because of adhesions and scar tissue. So hopefully there's some end in site. Just trying to stay positive and thinking happy thoughts! Thanks for asking.

CARRIE