Cleveland Clinic, Day 1

by on Wednesday, December 8, 2010 9:26
This entry is filed under: Living with jpouch

Dr. Bo Shen

Well, I finally made the pilgrimage back to Cleveland Clinic (CC) to see the famed “King of Pouches”, Dr. Bo Shen. As one involved in the J-pouch/IBD community, I had, of course, heard of Dr. Shen before. He’s sort of the last desperate act for a lot of people who come from all over the world to seek his counsel. I decided to go after a friend of mine and my mother’s met with Dr. Shen, e-mailed me and said, “Liz, you have to go. If your insurance doesn’t cover it, I will pay for it. He’s that good. He can help you.” So, by divine Providence, our new insurance did cover Dr. Shen, and I made an appointment immediately. When I called in October, his first available was January 18th. I was a little disappointed to wait that long, especially after developing the lupus issues, stopping Humira and feeling at a loss for IBD/J-pouch management, but enter more divine Providence. A friend I met, also through the IBD community, had her surgery at CC and was a patient of Dr. Remzi’s, a colleague of Dr. Shen. So, she got me Dr. Shen’s e-mail. He got back to me…the same day! A random patient he’d never heard of, never had a referral from, AND he offered to get me in sooner. So, here I am, writing about my appointment yesterday, and although it was a long, exhausting day of tests and appointments, (twelve hours to be exact), I feel so thankful to be in the care of this expert.

I arrived at 8:00 a.m. yesterday morning and checked in for my pouchoscopy. Naturally, I’d done my “prep” by drinking only clear liquids the day prior-no food. This is a struggle for me sans Prednione, but damn near torture after being on ‘roids for almost two months. But…I did it. The scope was my first meeting with Dr. Shen. I found him friendly, cheerful, and very informed. We talked a bit about my history, they loaded me up with Demorol (which I’m typically allergic to, but didn’t bother me yesterday) and Verset, and although I was loopy, I was able to watch the scope on the screen, watch him take the biopsies, and ask him probably the same question ten or fifteen times. When I was wheeled back into my curtained area, Dr. Shen came back to give me the images from the scope and review them with me. At that time, still under the blissful spell of Verset, I declared, “Dr. Shen, you are J-pouch Jesus. This is what I shall call you.” He cracked up.

After what was probably a much more lucid conversation with my mother, he scurried off to his next ass-reaming. He instructed me to go have several tests, “right now.” So, we went to his scheduler, and I went immediately to what I referred to as my “ass trajectory” test, although it was actually called marometry test. I lied on my left side, the typical ass-exam position, while a doctor placed some kind of sensors around my “hole”, then threaded a tube up my anus to my pouch. First, I did a few squeezes to test my muscle tone, then he inflated the balloon and asked me to tell him when I felt like I needed to have a bowel movement. I lied there for a while, waiting to feel something, and he asked me two or three times, “Do you not feel that yet?” I said, “Well, I can tell something is there, but I don’t feel like I have to go to the bathroom.” I told him, “After years of training myself to not go, I think my sensations are a little off.” Turns out, that’s true. Dr. Shen suspects I have dyschezia, which literally means, “difficulty in defecating (usually as a consequence of long continued voluntary suppression of the urge to defecate)”. The doctor doing the procedure moved the balloon down a bit and man I could really feel it then! It felt like a pain on the left side, similar to what I get when my anus spasms. I eventually was able to push the balloon out. I then wiped my ass, pulled up my pants, went to the bathroom and headed for the lab. There, I had several vials of blood drawn and was given a cup for a stool sample. Mom and I trotted off to building H to wait for my barium enema test, but they couldn’t get me in until 4:00 p.m. and they were running behind. My appointment (back in building A) with Dr. Shen was at 4:30. After not eating for two days, I finally hit a wall in the waiting room. I hadn’t been allowed to drink or eat after the scope in preparation for the barium test. Fierce bitchiness set in and I said, “Okay, screw this test. I’m done not eating. If I don’t get something to drink or eat in the next ten minutes I’m going to pass out.” So, we said sayonara to the X-ray lab and headed to the nice cafe nearby. I scarfed down a small portion of bland pasta and a few bites of yogurt-just enough energy to get me through my appointment with Dr. Shen. I wanted to be able to think and be semi-coherent during my appointment with him, and two days with no food, and a full day with no fluids does not a coherent no-coloned girl make.

We spent a good deal of time talking with Dr. Shen. He’s surprisingly informal, which might be the secret to his success. He gets you in when you need to see him, he doesn’t have someone make copies of your records, you just bring what you have and you sit and flip through them together. This is really nice because medical records are not always correct. Typos and misinterpreted dictation can lead to confusion, so it’s nice to be able to go through that with your physician. We also watched my defecating pouchography (x-ray video of me pooping) and he saw some pouch anomalies. He threw out about four possible theories for my problems. Two were functional (some sort of buldge around my anus/J-pouch that is too close to my vagina), a possible fistula from my J-pouch to vagina (eww). He is testing me for IgG4, autoimmune pouchitis, and then of course trying to determine if I do have Crohn’s. My pouch looked good in the scope because of Prednisone, so it didn’t look as nasty as it did during my last scope. I go today for the barium enema (more not eating) and another appointment with Dr. Shen. I really appreciate how thorough he is with his patients. I think it’s so refreshing that he really understands that it’s important to cram in as much as you can while you are here. He also told me that I should be tested for anklosing spondylitis, a concurrent condition that can occur with IBD. He also mentioned that I need to switch to an estrogen-based birth control pill.

What I’m listening to: De Stjil, White Blood Cells, and Elephant by the White Stripes.

Where I’m eating for my next meal: Mallorca, fine dining Spanish in downtown Cleveland
What I’m thankful for: All the kind people, my mother, J-pouch Jesus.

Cutest story: Our bellman, John, is also a pastor, and when we came down to get in the “ride” he’d arranged for us, he outstretched his arms, motioning for mom and me to come under each one, gently hugged us, bowed his head and began to pray for “Sister Davis.” I didn’t apprise him of my new surname. I figured God was privy. After the prayer, we turned around to see our car was a white stretch Lincoln towncar. Mom was crying from the emotional prayer, I was cracking up that we got a limo. We had a lovely conversation with our helpful driver. Nice way to start the long day.

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9 Responses to “Cleveland Clinic, Day 1”

  1. avatar

    Russ says:

    December 9th, 2010 at 6:46 pm

    Well, it sounds like you’re off to a very good start. Not sure what else to say except thank you very much for documenting all this, and good luck!

    [Reply]

  2. avatar

    Kim says:

    December 11th, 2010 at 6:12 am

    WOW! Thnk you for posting. I am 41 and have had UC/Crohns for 17 years. I was diagnosed in the early 90’s with Chrohns. Over the years as progress has been made in the medical field I was re-diagnosed at Duke with UC. I had 2 bowel ressections before my Colectomy in 2008. I had a 2 year old daughter and a 4 month old infant when I was admitted to the hospital and told to I should have it removed. It has changed my life. I wish I would have been diagnosed correctly the 1st time and I could have had it removed once i grew tolerant to most all of the medicines. The one thing I would suggest is you get the autoimmune serology to determine if you are prone to chronic pouchitis. I have a marker that says i am prone to pouchitis and was told so by my surgeon prior to having the 1st surgery. I have not had pouchitis yet! (knocking on wood)
    I did not recover well from the 1st surgery and the take down was even worse (blood clots). It took me almost a whole year to fully recover and my pouch to start working correctly. Anway, I guess my you made a subtle point. YouR WELLNESS relies on how good your Dr. is. I was fortunate to live neear Duke and UNC hospitaLS AT THE TIME AND HAD SOME OF THE BEST MEDICAL CARE IN THE NATION. My suggestion is to everyone, do your homework and find your own personal J Pouch “Jesus”
    Blessings and wishes of wellness to you

    Kim

    [Reply]

    avatar

    Kim Reply:

    Forgive me for all the typos, have a 2 year old on my lap! lol

    [Reply]

  3. avatar

    Abby says:

    January 20th, 2011 at 6:52 am

    Lizz: Your posts have been really helpful to me. I have an appointment at the Mayo Clinic coming up soon regarding surgery to remove my rectum and revise my j-pouch, and I feel like I know a little bit more about what to expect after reading your entries. Keep them coming!! I hope you’re well and am sending healing thoughts and prayers your way.
    Abby

    [Reply]

  4. avatar

    Kat says:

    February 4th, 2011 at 11:07 am

    Jenn I loved hearing your stories and identified with them! I haven’t seen anything in almost 2 months and am dieing to hear more. What was the outcome of all of your tests with JPouch Jesus? How are you doing now? I hope and pray that you are better & getting off the steroids. I have been on Prednisone before and have now been on a more mild roid, Entocort. I have been taking the Entocort for at least 2+ yrs now and want off so bad! My Doctor is even lecturing me to get off, but hasn’t come up with an alternative that works against the chronic pouchitis. Like I want to keep taking this steroid! Like you, I don’t appreciate the struggle with weight gain or the mood swings. At one point is seemed to help, but now I wonder why I’m taking it anyway. I have been the same for 3 months or so with small break through in improvement but none lasting. Please let us know how you are and what the latest is. I have not been big on interacting with the Jpouch community because reading stories tend to make me emotional, and frustrated with all of the success stories. I like your style and you made me want to hear more!

    [Reply]

  5. avatar

    Lizz says:

    July 17th, 2011 at 1:32 pm

    Thanks for the nice compliments, ladies.  I appreciate them :)
    I promise to do another entry soon. I have been a lazy blogger!  

    [Reply]

  6. avatar

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    February 28th, 2012 at 12:15 pm

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