Well I recently posted after 25 yrs the doc said my k pouch had crohns. NOT TRUE biopsys came back neg. This test I had Tuesday looked very closely at the wall of the bowel and no crohns seen. Edematous and a thickened wall at the suture sites going into the kock pouch probably causing patial obstruction. GI says to follow up with surgeon at this point.
I posted this in case anyone is having problems with pain and the kock. Actually the pain is mostly up stream. It relievs with a very gassy gurgly noise. Hurts something awful.

The contrast took 11 hours to come thru. Most of that time spent crying and vomiting. No one warned me not to eat after the test. The contrast swells the bowel for viewing.
Jeanne
Have to go see Dr Launer in La Jolla for fix.

I am so sorry for your suffering...but at least we now know what it is...the big question is what do they do now?
Thank you for posting about the not eating after the test..you will probably save a lot of others the suffering...to bad no one had warned you.
How do they fix this?
Sharon

Hi Sharon,
Yeah I'm worried. My guess is removal of pouch and permanent ileo or another pouch. He used my J pouch to make the K so maybe I have enough bowel. Orrrr maybe entocort in pouch. I will know more when I go see him. None of the docs up here have any idea where to go from here
Maybe this problem is why my j pouch failed? The pouch is very inflamed with lots of pouchitis and ulcers. I have to take a plane ride to Southern CA to see him.
Take care hope you are doing OK

Holy cow I just read that Dr Launer retired from surgery does anyone know if that is true. Who else is doing surgery at Scripps, La Jolla, CA.? Janice what am I gonna do?

Hi Jeannie...I just got your email in yahoo. Why do you think they need to redo the pouch? I'd email Dr L (yes, he is retired, but still in practice and dir of admin and will continue some surgeries, though case by case). Let him know what the dr's found and that you'd like to bring those results with you for a consult iwth him or ask if he thinks Dr Worsey should take over your care. And, ask if he'd like to work with your dr and request any further tests prior to your consult.

I am sure he'd see you and/or have Dr. Worsey consult. I just saw then both last week when I went with Allison on a followup visit. Dr Worsey's is very good and works close with Dr L so you'd be in good hands.

I'm not following what type of issues you are having with the pouch....maybe Dr L has some herbs for the pouchitis (I know he uses a special pharmacy for some prescriptions). If the pouch needs a redo, if they used the J for the k, there could be enough small bowel.

I'll call you Monday...

UPDATE: I am flying down to La Jolla, CA Tuesday, March 2 to see Dr Launer. He would say "it's about time" It was Mar 3 09 when I had my first ER and CT scan for this disturbing pain. I will update anyone who cares when I know what the fix is going to be if there is one.
After much research possible outpatient procedure to open up stenosis.
Dr Launer is not being very cooperative with me and will not even tell me to prepare for a scope of pouch. He has been unbeleivably helpful by email all year but disappointed I waited so long to see him. He is maybe retiring but still seeing patients I guess. All I know is what I hear from others.
Jeanne
I can't believe no other k poucher has had this obstruction problem

Hi Jeannie..Dr Launer may not know you got approval for a consult and pouch scope. I know that the front office handles the ins. approval paperwork and they are the ones who confirm what your ins approved. For scopes they have you just irrigate prior to appt and food after mid. But, I ate light the day before (liquids, soup) so he could get a good look.

I also think Dr L just has alot of administrative duties on his plate and I think we get used to emailing him. He responds sometimes late after hours and may not have your chart in front of him. Not alot of surgeons offer email, I think some of it gets lost in translation.

The good thing is that his collegues Dr Worsey as well Dr. Salganick are trained in the kpouch and performing them. All you have to do is let Dr Launer know you would like to transfer care to either of them.

Don't get discouraged. I know you have to fly from up north and costs are incurred. But, I think they'll take care of you.

I saw Dr Launer and was scoped. It really hurt. He has presented me with a tentative diagnosis of: the opening the food comes down into the pouch is too small. CT state it was inflamed and thickened. Liquids have been coming thru ok. I left and flew back home knowing I will be going back down next week for an open surgery to revise the pouch. Dr Worsey will be primary and Dr L will assist. Another scope by Dr Worsey will be done before surgery to agree it is the best way to proceed.
It's sort of like when I had my jpouch the first year and had to be dilated over 8 times to keep it open. Six finger dilations & 2 under anesthesia. I think this is a litte more involved. Hey Janice thanks for all the info also IBD mommy and of course Sharon.