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long sorry

I’ve had my pouch 24 years. Due to original surgery gone bad I had a lot of issues over the years but got over them and led a good life. Last year I had to have 5 inch resection due to my intestines stretching out from complications due to this original surgery. Anyway, healed fine, no issues until…Oct last year stated getting extreme fatigue and nausea, some weird pain. Went into hospital could find nothing wrong. Things got worse, could barely walk, couldn’t eat or drink, went back to hospital.
Surgeon found another small twist and took out another 11 inches. Did not solve my problem, I’m worse. Surgeon and GI have no clue, sent to a GERD specialist gave me PPI, made things worse, did mobility test, came back fine, went to ENT, no signs of GRED.

So GI recomended I see Dr Schen. He said I have SIBO due to mechanical issues with pouch. Since I have no stores fat, I lost a ton of weight, even though I had my twist fixed it is still twisting, nothing is holding it perfectly still,

1. and he wants me to do a SIBO test, Columbia does not do it, buy online. But he told me to take xifican and you can’t take the test until a month stopping antibiotics and some tests they do not ship to NY.

2. then I have to go for a anal test to make sure it’s working, ok no biggie

3.then a defograhy to make sure it’s emptying fully

4. finally a pouch exam and he’s going to put a stent in to hold the intestines down. Idk about this. No mri, no ct scan, he’s just certain. Will this cause more issues? I never heard of this and when I questioned the nurse she told me to stop and just let the dr do his thing.

This is making me nervous. My surgeon of 25 years told me not to see him, didn’t say why,  but he’s not helping me either.

Any one have good or bad experiences with Dr Schen

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I in the good experiences column.  I have 100% confidence in Dr. Shen.  I feel fortunate to have come under his care shortly after my surgery.  He has focused his practice on diagnosis and care of pouch problems his entire career.  I suspect no one has more experience.  

The work-up he did for me was thorough - anal manometery and defecogram before a diagnostic scope.  I've since had banding to treat mucosal prolapse and balloon dilation of an inlet stricture; both provided relief of symptoms.   I see him annually for screening (and banding if needed.) He meets with me before and after on days of each  procedure. And when I've wanted to talk to him between scopes his office schedules virtual appointments for me. His advice on diet and medication have been spot on.


I've got a "floppy pouch" issue - the lining gets droopy causing various problems.   Dr. Shen tightens the pouch in these areas during pouchoscopy with tiny bands - the same ones that are used to treat bleeds in the esophagus. You can't feel them and they fall off after they do their job. I think of it as a pouch facelift.  It has improved my pouch function each time.  

I have had a very positive experience with Dr. Shen. I have had my pouch since 1989, and was issue-free for 11 years, at which point pouchitis kicked in. My doctors put me on Cipro to control the pouchitis, and I was never able to get off of it for more than a month at a time. I was a patient at The Cleveland Clinic and I went to see my original surgeon (Lavery) in 2003 as a pre-op to have my pouch reversed - I couldn’t stand the side effects of Cipro any more. Dr. Lavery had me meet with Dr. Shen, and he put me on a new regimen of Sulfasalazine and Xifaxan - I have been on that for over 20 years now without any side effects….my only issue now is that Xifaxan seems to be on back order.  I followed Shen to Columbia and see him every 2 years. He has been great for me and I am thankful for him.  

Dr Shen is the only Dr I will go to for my pouch—here’s why.
I had my k-pouch for 8 years before I started having severe pain 2 hours after eating every meal . I  went to Laney clinic, palms hospital in st.petersburg fl ( where I had surgery, but they are no longer doing this surgery) and no one could find the problem. (Many cat scans and tests ) Finally got the appt with Dr Shen at Cleveland clinic and he found the problem immediately after a pouchoscopy. It was a fecalith—which is impacted stool that was blocking the food passing through. The fecalith was about 2 inches in size.  He said I was the 12th person in his 30 years of practice to have this. He set up a lithotripsy surgery with a urologist and colorectal surgeon. They were able to get it out by “blasting” the fecalith, just like a kidney stone. Then they used a basket to get out the pieces. I had this done at Cleveland Clinic in Weston Fl. Needless to say, this was the first time this urologist had done this on a pouch. Dr.Shen was not there, but basically organized it and talked to both surgeons.  
I will not go to any other GI dr for scopes. He is the best and has seen thousands of pouch patients. I told him he can’t retire!

Now I go to NY every year for a scope, because I don’t want to take a chance on developing another problem. If he sees something starting to develop, he can remove it before it gets too big.
He is the best!

Not crazy about Columbia hospital, but it’s a short visit and we leave immediately after the pouchoscopy. Have to stay one night in a hotel that is walking distance to the hospital.

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