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2 replies

What's next??

L LisaTMember
Hi everyone,

Been having abdominal pain-pinching and lots of noise and gurgling for now 3 years. I've seen Dr. Sonoda at Weill-Cornell three times. In April, he was very concered about Crohns, also he said that I had three strictures. one at the old stoma sight, one at the anal anastamosis and one at the afferent limb. He did a flexsig in May. Heard nothing back.

Went back last week and he ordered an MREnterography. Done.. Read the report and his nurse called me and said that there was nothing remarkable, one stricture at the anastimosis (anal). I asked where did the other strictures go? She said that perhaps they are small enough that they didn't show up on the MRE.

SO, my question is, why do I still have pain? She did not know.
How did I go from Crohns and three strictures to nothing unremarkable? She did not know.

Now, all the travel and expense to NYC and I don't think I'm any closer to an answer.

My doc here in Syracuse had suggested adhesions. He described the lysis procedure and it's nothing that I really want to do.

I know this all sounds very scattered... My mind is racing and I'm an emotional mess. I have to go back to teaching next week and I'm having a really tough time.

ANY advise??

Thanks,

Lisa
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J jeaneMember
I would call Dr. Sonoda's nurse back and ask to speak directly to him. It is not acceptable to have two procedures done when a surgeon is concerned about crohn's and not speak directly to his patient. If you have nothing wrong like crohn's or pouchitis, maybe you have IPS, but that would cause symptoms similar to pouchitis which is does not sound like you have. You may very well also have adhesions which I am not sure what the symptoms for those are.

For the record, I often have gurgling in my jpouch, esp when I need to empty it and sometimes the noise is very low like in the rectal area too. I also have slight pelvic pain when I empty, but that is related to inflammation and it is not a pinching type pain like you are describing. If you do have strictures (esp at the anastomosis), it would concern me that he is not addressing them.

Good luck and please report back your progress.
CTBarristerCTBarristerMember
The MRI Enterography is looking for thickening of the bowel that would signify inflammation in the ileum. In effect it is a test for Crohn's because they want to be able to see if there is a pattern of inflammation in the ileum that would suggest they are dealing with Crohn's.

It sounds like you are communicating with intermediaries and minions and you need to speak to the big dog (Sonoda) himself. "I did not hear back" is not an acceptable aftermath of a scope. You need to call and request an analysis. That is what you are paying for.

I had an MRI Enterography recently done on my ileum and I posted a thread about it. It was not conclusive on Crohn's but showed narrowing of a segment of my bowel directly above the J Pouch inlet. I do not have any pain issues like you though. My MRI was reviewed by my pouch expert with his "trusted" radiologist and compared with a prior 2008 CT Enterography I had and I heard back from him within days. I think you need to be more proactive in getting answers.
Last edited by CTBarrister

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