Dr. Shen, Part Deux and The Third Button

by on Monday, November 14, 2011 14:42
This entry is filed under: Coping/Support

Dr. Shen, Part Deux

And

The Third Button

Hello no-coloned readers.   Long time no blog.   I’ve improved so much since last-year’s visit with Dr. Shen that I haven’t had much to bitch about.   This is my excuse for my vacation from Internet vent-cause-yer sick-land.   But, I’m glad to be back to tell you about my upcoming adventure to Cleveland Clinic.  I’m weirdly excited about it-I know, I’m bonkers, but  I kinda can’t believe it’s been a year already.   Time flies when you spend slightly less time on the toilet and get your life back a lil’ bit.   I’m excited because once again,  I am receiving treatment and will have my progress monitored by one of the best doctors in the world, probably the best pouch specialist (are there others even?).   I am admittedly also interested in the Versed+Demerol combo I’ll receive for the pouchoscopy.   I’m elated that I get to go to a place where they refer to the tube-up-new-plumming exam as a pouchoscopy, not a colonoscopy.  I’m relieved that I don’t have to give the, “It’s not a colon scope.  I have nooooo colon,” speech-(say in your best spooky, Vincent Price voice).

After the pouchoscopy, I get a manometry test, ie: a deflated balloon is shoved up my ass, inflated, then I poop it out. Yowza!  This tests my anal muscle tone.  I wish I could say it tested my level of embarrassment, but that ship has long since sailed.   At this point in the day, the drugs have mostly worn off and I’m getting good and bitchy from not eating solid foods in 1.5 days.  Baring any unforeseen problems with these tests and/or complications, I’ll go get some good cafe food and go shopping in the mall area of Cleveland Clinic (yes, you heard that right.)  After that, I get to hang out with my Mom and aunt, and wait to talk to Dr. Shen.  Hopefully during the appointment, when we review the tests I had earlier in the day, I’ll hear about how awesome I’m doing, how the suppositories he prescribed me are helping me empty properly and I won’t hear a mention of surgery.   After this, I’ll tell Dr. Shen how awesome he is, and after all the gushing, I’ll go to a nice dinner with my Mom and aunt who were kind enough to accompany me on this journey.  In a couple of days I’ll go home and not think about this for another year.  Here’s hoping.

The Third Button

Why do I purchase pants that have that blasted third button on the inside? You know what I’m talking about? That extra flap on the inside of pants that exists despite a zipper and two hooks already in place.  I always forget about the third button when I’m rushing to the loo, tearing into my pants (not as sexy as it sounds), am primed for relief then, “CRAP! Third button…you screwed me again.”

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19 Responses to “Dr. Shen, Part Deux and The Third Button”

  1. avatar

    Michelle G says:

    November 15th, 2011 at 7:22 pm

    Hi… Ive been searching for answers.. Im 22 now and had the Jpouch surgery done at Mayo clinic when I was 18… Like you I had so many complications and was so disappointed because I was told this surgery would be the answer to all my problems…. But yet created numerous other complications… It is helpful to see someone young like I am who has had the surgery and complications and come out strong and healthy… I am now trying to find a good gastro in central flordia and it seems impossible… Here hoping! Thank you!

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  2. avatar

    James Doane` says:

    November 23rd, 2011 at 5:10 am

    Have you heard of the BCIR.  Done in St. Petersburg, Fla.  Google it.  I am going to have it done to me asap.  I have a bad jpouch .   Good Luck. 

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  3. avatar

    Em says:

    September 13th, 2012 at 11:53 am

    Soooooo Hoooooow weeeeee dooooing? If you are one of Shen’s patients you will hopefully laugh at this. I’m heading back from my first visit since take down. Met my pouch buddy for lunch, he’s another of Shen’s patients and this is how we greet each other. I think he’s a genius and have had a complete turn around since I started seeing him. I had my first manometer done and had no idea what I was in for. My husband had ran to grab some bfast do I was by myself! Not that I would have wanted an audience. When the started putting electrodes near my rectum I knew I was in for it. So thanks for making me laugh. Lol! Good to know we are thoroughly checked out at Cleveland Clinic. If you have a pouch and it’s not working right, go see Shen. He’s crazy, but awesome.

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    Lizz Reply:

    haha, that’s spot on! I am going to revise your last statement and just say that he’s crazy awesome. (Being a little coocoo myself, I save “cra cra” for the truly disturbed.) Summary: Dr. Shen is the shiznit and I’m so glad he helped you too! xoxo

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  4. avatar

    Doug says:

    September 29th, 2012 at 6:12 pm

    Lizz,

    I have a few questions…

    I’ve been to the Cleveland Clinic a few times…for the most part i’m very appreciative that they are there (I’ve had major problems finding a doctor that knows anything about jpouches or Gardner’s Syndrome locally). The only issue i’ve had with the jpouch is it was starting to show wear and tear and had something similiar to hemorrhoids so needed some banding done (causing me minor issues at the time). Now (after the banding surgery) when I use the facility I get some stool out then a plug-like thing comes down and closes things off. So I’m not able to empty my pouch like I used to…gets frustrating. I did read somewhere on this site or a similar one about bending over almost touching your toes then try going…that works about 30% of the time. At least it lets me get rid of gas that gets stuck in there.

    I have 2 questions: I think I have a prolapse problem? My local doctor disagrees. curious what you or your readers think I have? I’m new to issues and I’ve had my jpouch for 30 yrs (been very lucky and must’ve had a great surgeon).

    Secondly, I pretty much want to switch doctors at the Cleveland clinic and go see Dr. Shen. The other doctor’s nurse said that Dr. Chen isn’t a surgeon…what all is he capable of fixing? Of course, I need to figure out what’s wrong with me first.

    thanks for listening,
    doug

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    Lizz Reply:

    Hi Doug,

    First off, so sorry for the super-late reply. I am getting older and am less tech-savy by the minute. I must have my notifications turned off. (Younguns, help!) Now, on to your question. Dr. Shen is not a surgeon, you are correct. He is a GI and a pouch specialist. He’s a rarity, like us 😀 I have not needed to see a surgeon since seeing Dr. Shen. He was able to greatly improve my quality of life by making a correct diagnosis of my mechanical pouch issues and treating them with natural drugs and occasional antibiotics. I see him yearly for a pouchoscopy to be sure everything is behaving properly. I have a local family doctor, but he manages all of my pouch/GI care from afar through direct email contact. Ie: I directly email him and say, “Dr. Shen, these are my symptoms. What do I do?” Sometimes he tells me to get a specific test, which my family doc orders, then I report back to him. He is so much more efficient and direct than any other doc I’ve ever had b/c he totally cuts out the bureaucratic bs and does most things himself. I think in terms of diagnostic and research ability, I’d describe him as a really nice, Asian “House”. AKA, he’s the best.
    Obviously, I have nothing but good things to say about him, so if I were you, I’d give it a whirl.
    I will say that re: your emptying problem, there are several possibilities: stricture, efferent limb (where pouch connection goes at diagonal and stool doesn’t empty properly). Those are just two possibilities I’ve experienced when I couldn’t empty well. I used to do what I called “toilet yoga” to try to get the literal shit out, and one method was to press on my abdomen. When I told Dr. Shen that he told me to absolutely NOT do that. That pressure is very bad for the pouch, so just a head’s up to back off if that’s in your repertoire of ass aerobics.
    If there’s anything else I can do to help, please let me know!

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  5. avatar

    Doug says:

    November 1st, 2012 at 5:49 pm

    thanks for the info Lizz! much appreciated!

    It looks like I’m heading back to Cleveland the day after Thanksgiving. I have 2 appts that day…Dr. Church and Dr. Shen later in the afternoon. I’m hoping this trip will allow me to avoid surgery that’s tentatively scheduled for mid December.

    Funny you mention Toilet Yoga? When I want to get gas out, I try to act like I’m a center on a football team (pointing left and right….u over there….u get him….hike hike) then I hope I can pass gas. Kinda sad hey? Sometimes it works. Being unable to fully empty your pouch is definitely uncomfortable but possibly even worse is having gas getting backed up and unable to get that out. Talk about feeling miserable? Oh well, hope the trip to Cleveland is more productive this time? Take care…

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    Lizz Reply:

    No way! I’m heading out tomorrow for my yearly ass-exam and pow-wow with Dr. Shen. I am bringing along my laptop so I can share all the gory deets.  I think you’ll really like him and I hope he’s able to help you with a simple fix as he has me the past couple of years. 
    Are you taking anything for Pouchitis or is this a functional/mechanical issue?
    Best bowel wishes,

    Lizz

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    Doug Reply:

    I’m not on any meds right now (jpouch related). I eat yogurt every now and then with the probiotics. A doctor here kinda recommended me trying that. I talked to Dr. Shen by email several months ago…he made a suggestion for a prescription and my local doctor denied it. Instead she suggested I stick this metal object by my ass. haha. I’m like, “no way!”

    I’m glad they are letting me see Dr. Shen. Not sure what they are planning for that day but it sounds like progress? I’m in St. Louis and its a complete joke trying to find a doctor here and knows anything about my condition. Some doctor recommended that my stomach be taken out about 10 yrs ago. My stomach is half carpeted with polyps. So pretty much every doctor here keeps going back to that diagnosis. Luckily I did some searching on my own or my stomach would’ve been history several years ago.

    Good luck on your trip! Can’t wait to hear the details!
    dougl

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    Em Reply:

    I totally agree with Lizzie about Shen. He was like a floodlight in the dark for me. The Clinic as a whole is amazing, but he’s the cherry on top. HE LISTEN’S!!!!! I’m heading there on Tuesday. When I first visited him I was having similar symptoms to Doug and I waited, endured the misery, etc. got hospitalized a few times, pouchoscopy after pouchoscopy…. Blah blah blah, my GI and Surgeon at Vanderbilt were stumped. When I was wheeled in his procedure room, we went thru my symptoms and he nails the diagnosis. He caught it just in the nick of time I had an angulation/ Afferent Limb Syndrome, a sinus that was headed for my spine, and because of that major pouchitis. Me waiting lead to a crazy long f$&ed up saga that doesnt need to be rehashed so I’ll sum it up in that he’s fixing me and relatively naturally, do not hesitate if you are having to do the potty yoga routine. It is no fun to be poked and proded for sure, but its better than going septic or paralyzed. He’s making incredible strides in pouchitis treatments. I am 60% better than I was a year ago. I would like to offer up two recommendations for Doug: Dr. Paul Wise in St. Louis if you need a local surgeon, he was my Surgeon at Vanderbilt and is an excellent Dr. and very smart about pouches. He was the one that suggested Shen. However if you are in line for work, consider having it done at the Clinic. I know it’s an added expense but highly worth it. Dr. David Dietz is my surgeon there and he’s one of Shen’s fav’s. I’ve used the best of the best here in Nashville, but having Shen on board now is like I finally found a dr. Who speaks my language! I wish you both luck and bold strides in your journey.

  6. avatar

    home decorating says:

    November 5th, 2012 at 8:49 pm

    No matter if some one searches for his required thing, therefore he/she wishes to be available that in detail, thus that thing is maintained over here.

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  7. avatar

    Doug says:

    November 9th, 2012 at 7:04 pm

    Got a bit of bad news today. Pretty sure Shen is booked the day I’ll be in Cleveland so I probably won’t see him. @Em, thanks for the doctor recommendation. If I end up needing surgery I’ll be sure to try to use him. Got a question: do you have Gardners? I used to frequent the Gardner’s yahoo site and remember someone who had a doc at Vanderbilt.

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    avatar

    Lizz Reply:

    Doug, if you have his email, shoot him a brief one asking if there’s any way to get worked in the day you are there.  He’ll make it happen if he can. 
    What was the rx he recommended? If it’s Belladonna/Opium suppositories that’s what I take and they help immensely, but are a bear to get. I have luck with my mail order pharm, Medco. No local pharmacy would fill it b/c opium is class 2, which is weird, b/c you can get all kinds of class two pills. (I have a whole rant on it here: http://www.jpouch.net/2011/02/11/belladonna-wars/). I have to get them to mail me the rx from Cleveland, then mail it into Medco. No faxes, etc. b/c controlled substance, and no more than a month’s supply. It’s quite a song and dance, but I’d be happy to help you figure it out if you’d like. Try to get in with Shen! He’s the puppet master of pouch disorders.

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  8. avatar

    Lizz says:

    November 11th, 2012 at 9:50 am

    Also, WEIRD! Dr. Wise was my pouch surgeon @ Vanderbilt and I lurve him! Small bowel world. (Ba dum, cha.)

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  9. avatar

    Doug says:

    November 11th, 2012 at 6:42 pm

    Lizz,

    Here’s what he said “doc prescription for lactulose. take it by itself”. my local doc refused. She’s very old school. So I wasn’t surprised. She suggested using some type of metal catheter. I’m like, “no thanks!” Can’t wait to hear how your trip went? I appreciate your input…thanks a lot! I sent Dr. Shen an email….we’ll see what happens?
    dougl

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    Lizz Reply:

    What in the world?! It’s natural! No drugs. Old school (sadistic?) indeed. I tried it. It’s a natural laxative, but it doesn’t give you crazy explosive poos or OMG urgency. Dr. Shen says it’s best to keep the pouch acidic, which this does as well. It made my stomach cramp a bit at first, but if I ate with it, no problem. It’s very sweet and tasty! I can’t believe she refused that. New Dr.? She needs to get with the times. I presume he rec’d this so you could empty easier/acids for pouchitis. I’m working on an EPIC blog post. I have to edit it and add more pics/gory videos, so beware!

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  10. avatar

    Doug says:

    November 12th, 2012 at 10:48 pm

    Lizz,
    Got some good news tonight…it looks like I’m on the schedule to see Dr. Shen on 11/23. That makes the trip more worth it now. I know all about the term “explosive”. I call it EAS (Exploding Ass Syndrome). Also, the same doctor that refused to write a prescription for me doesn’t think I have a problem.
    dougl

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    Lizz Reply:

    Well, let’s see what Shen says, shall we? 😉 I’m so glad you got in!!!! Huzzah!

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  11. avatar

    Em says:

    November 13th, 2012 at 12:03 pm

    Hanging out at the IBD clinic at Vandy. Dr. Shen gave me the all healed on Wednesday and told me I wouldn’t need to come up for a year!!! Wohoo! I’m still a little wary though. I still have Afferent Limb Syndrome. He recommended lactalose for yeast control but I’m clueless. Where do I get it? So glad he got you in Doug. Shen is definitely a magician with us pouchers and always willing to help. Yay for doctors like him!!

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