Gastrograffin prep

That might be reasonable. Unlike a pouchoscopy, during which the endoscopist can rinse away any residue that obstructs their view, the gastrograffin contrast will show the boundaries of the GI structures, which could be distorted by any residue.

Scott thanks. That makes me feel more comfortable. I was afraid that prep could irritate my pouch.

Well, your pouch will probably be happier before the prep than right after, but it shouldn’t be a major deal. Mostly you don’t want to have to repeat the study because of a poor prep.

I agree with that!

If a "simple" pelvic x ray with contrast fails to reveal a suspected angulation, torsion, intussusception, or other mechanical problem, I suspect you may be treated to the multiple pleasures of a "dynamic defocography." As the name implies, after prep, you get your pouch filled with a barium paste with an appliance like one caulks their bathtub with, then sits on a commode trying to empty their pouch while being observed via fluoroscope.  To my knowledge, this often helps nail down with a definitive diagnosis.

Thanks Steven my doc said I needed one or the other and said he’d spare me the defocography for now. I’m so tired of my issues I’d do practically anything to have a healthy pouch.

After all the other tests were exhausted, if I still had no definitive diagnosis, I'd even go for the defocography.  As I see it, how horrible could it be after all the humiliating and gross stuff we've already endured?  I might just consider it another adventure!  BTW, your prep protocol does not seem excessive to me.  Cheers!

I've had the gastrograffin and am pretty sure I did not do the mag citrate nightmare.  But, it was a long time ago so I can't be sure.  I have definitely done defocography more recently without all that prep.   (I don't think they always use gastrograffin).  I did it at CCF and since they are so experienced with j-pouches there, they often do their tests/procedures in less invasive ways than elsewhere.

Well, the gastrograffin test was negative for pouch mechanical malfunction. My GI called to tell me personally. He now wants me to do another manometry test saying it may still be a pelvic floor issue. I had a manometry test at CC 4 months after take down because I was having trouble emptying with high frequency. The results of that test lead to 4 months of pelvic floor physical therapy back home. I learned a lot through biofeedback but certainly don’t want to go through all that again. I don’t know what to think. Maybe this is as good as it gets for me.

JFILL, if you give up the search for an explanation then this is indeed likely to be as good as it gets for you. If you patiently pursue an answer then things might get better. It’s reasonable to consider what you will do with the results, but the manometry test isn’t that big a deal, is it?

Thanks Scott. Yes I’m going to follow through with the manometry. If pelvic floor is the issue, my doctor said the biofeedback therapy this time would not be the same as before. So you’re right, I have to look at this as another opportunity to find what could be my answer. Mostly I’m just frustrated. 

The frustration is completely understandable. I hope you don’t give up on yourself (and your future self).

I’m good. I have too much invested to give up now.

Hi -- I've also had abnormal manometry findings and have done a fair amount of pelvic floor PT at home.  Going to see Dr. Shen in NY in April and may return to do biofeedback and PT with their therapists who likely know more than the therapists here.  It's really a drag -- sounds like our problems are fairly similar.  I hope you find a solution.

Best,

Debbie

Thanks Debbie, please post what Dr Shen says in April.