LJK, I'm sorry you are going through all of this. I had the manometry, spelling is wrong, test and it was not a big deal. They inserted fluids and something else that I can't remember but it was a quick test and not as gross as many other I've had.
I went to the Mayo Clinic. My GI sent me to neurology too. I was having many migraines and at Mayo's they send you to different departments if they think it would help. They did an MRI of my brain too. The good news for me was they found nothing other than having migraines and they changed my medications replacing an antidepressant with another that got rid of migraines, on the most part.
He also got me into the fibromyalgia clinic there. That was a big help.
I am not familiar with CC but think they and Mayo are the best places to go. It sounds like they found problems, other than the j-pouch it's self. I'd ask them what all of the test results have to do with your health and what do the results mean in the short and long term. It sounds like you are in j-pouch hell. I've been there but never had the other problems you have. I sounds like your poor body is under attack. Does malnutrition have something to do with every thing? I would think they would want to get this and other things cared for before surgery. I'm not a medical professional and think they should explain how all of this is going to make you feel better.
My j-pouch failed. The imaging didn't show the adhesions as they don't show up on it. They knew I had them as they were so numerous they were easily felt when they felt my abdomen. Could it be they diagnosed them this way. That and the pain, which had me on a pretty high dose of hydrocodone.
I have no idea what brain atrophy problem means but could that be playing a part in your understanding about what all is going on? You are obviously is a crisis and your j-pouch is clearly contributing to it. Can you have another appointment with the doctors? My husband and I met with my surgeon and GI together. My husband helped me in understanding what all was going on as I was pretty scared of further surgery and really didn't want them to remove my j-pouch. They agreed that diverting me to a permanent ileostomy and leaving my j-pouch intact versus removing it would be a good move. I saw the inside of my j-pouch during the scopes and other imaging showed other problems. I don't understand what your j-pouch going straight means as no one ever said I had a problem like that.
Are they now diagnosing you with crohns? What does that mean regarding your j-pouch problems?
Maybe the malnutrition needs to be addressed before they can go forward with the revision surgery. Is that your understanding? Is there anything they can do NOW to address your poor rear end?
If you are uncomfortable and don't understand what all of the test results mean then they should take the time to address your concerns. You need to get an exact understanding of what is going on and what to expect in the future.