J-Pouch Jesus

by on Sunday, November 28, 2010 13:55
This entry is filed under: Coping/Support

Electric Jesus

So, I feel a bit like I’ve been raping the Jpouch.net homepage lately.  In my defense, there’s been a lot going on and I’m under the impression that you guys are fascinated with my suffering.  Just joking.  Actually, I come to you now in a state of gratitude and excitement.  After years of trying to deal with Inflammatory Bowel Disease (IBD) with medicine, surgery, more medicine, more surgery, natural remedies, you name it, I am finally going to see the puppet-master of J-pouches, Dr. Bo Shen.  If you’ve read the jpouch.org board lately, you know or have heard of Dr. Shen.  He is a gastro at Cleveland Clinic in Ohio and is pretty much the bee’s knees when it comes to J-pouch problems.  He recently published a paper about IgG4 Pouchitis which is a fascinating discovery.  He’s on the cusp of all new research because he’s the one doing it.  His patients love him because he is kind and he knows his shit.   I would be a big fat (thanks, Prednisone) liar if I told you I wasn’t batshit crazy excited to be doing scope prep. tomorrow, driving seven hours to Cleveland with my mom in order to have a scope and clinic visit on Tuesday with Dr. Shen.  I am excited because maybe, just maybe, after over a decade of fighting this fucking disease, I will get some answers, and hopefully, a solution.  I’ve porked-up a solid ten pounds since being on Prednisone over the past month for lupus.    I’m interested to see what state my pouch is in sans Humira, but ‘roided up.  It feels unhappy despite my steroid-savior.

As I journey to Cleveland, have my innards examined, blood and tissues meticulously searched for anomalies, and decoded by my J-pouch Jesus, you, dear readers, will have a front-row seat.  I will photograph, video, and all-around-document my experiences there, and hopefully come back to you with new, promising news in the world of IBD and J-pouch medicine.

Wish me luck!

Cleveland Rocks!

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2 Responses to “J-Pouch Jesus”

  1. avatar

    Nathane says:

    December 3rd, 2010 at 8:34 am

    To whom will Please Listen, I know it’s kind of long but please read!

    Take a Deep Breath and imagine this story is about the person you love the most.
    I am writing this in a desperate plea to save a man who deserves it. My Dad Larry VanHoose. A man who’s goal in life has always to been to live healthy, help people who need it , take excellent care of his family and go the extra mile to do what’s right in life. I could go on and on, but I am trying to keep this short and to the point so someone will read it and get us one step closer to the top notch help we need.
    Quick History of my Dad: D.O.B. -Jan -1943
    He has always been in great shape healthy and no bad habits to hinder his health until six years ago when this emotional nightmare started. After going to the emergency room for a flare up of colitis that was severe.

    Surgery List: All in same large incision down abdomen

    #1-2004 – Colon removed with temporary illieostomy and j pouch construction. With and overdose of dilated because of machine programming error.(it was bad). Also was contracted with MRSA on the Liver from the surgery. There was a cyst on liver biopsies and was MRSA.

    #2- 2005 – Illieostomy reversal and j pouch hook up.

    #3- 2005 – 5 days after reversal, Surgeon had to go back in and fix adhesions from previous surgery (left incision wide open to heal( it was bad too)

    #4 -2006 – He developed a large hernia down the incision sight that was causing his guts to exit the muscle wall. So the surgeon used the kugel patch to repair. Repair did not last and was badly infected and painful.

    #5 – 2006 – Surgeon removed Kugel patch and cleaned then tried to repair with permical(Pigskin) Patch. In hopes that body would except and heal more natural patch.

    #6 – 2008 – Pigskin Patch Failed and seemed to be eaten up by the body. Large hernia was back. Feeling out of options I researched and pleaded much like I am doing now. We eventually found Doctor Rosen from the Cleveland University Hospital that had a new way to fix this type of life threatening hernia. Large Ventral Hernia Repair with laparoscopic component separation. Finally a success.

    Witch brings me too now. 12/1-10
    Beside adjusting to the new way of life with the jpouch things were good and manageable. Until recently dad started eating some bulk forming fiber. He might have over did it. Said one day he strained a little bit to go and said it felt like an inch or two of the small intestine came out? He pushed back in and let it heal for a few days by not eating. When we resume his diet he was not going as normal. Said it felt like something was closing shut. He was getting distended from no bowel movement. Milk of mag helped him to go a little bit for relief. He went from his normal of having 8-12 Bowell movements a day to barley going once with help of milk of mag. After a few days of waiting it out and him dropping 12 lbs to 129lbs. We went to the surgeon that hooked up the jpouch. He did a rectal exam with short scope and vac. Said all looked normal and well. As we told him all was not normal and well. He/we scheduled an Upper Gi with Barium contrast to see if anything shown .The next day we had the test and waited for six hours for it to enter the pouch never did. X rays shown it was getting to the top of the jpouch but then not entering correctly. It seems to cut down to a thread like section wich is probably why he is still able to go a small amount everyday .This was thanksgiving weekend and said we should follow up next week or go to ER if gets worse. I’m not sure if he is capable of finding out the problem and suggested surgery that would destroy the well earned hernia repair plus the chance for more adhesions. So he Scheduled a colonoscopy to look at the top of the pouch a month away! Geez. PLEASE HELP US!!!!!!!

    Anyone who knows the problems I’m talking about knows that this is a critical situation that will take a top notch jpouch doc to fix this up. If not its just a matter of time before something bad gives.
    My great father is the biggest fighter I’ve ever seen , most people would have gave up many issues ago. But he wants to Live. Me and my Mother have been by his side thru the entire nightmare. We have documented EVERTHING that has gone on, in notebooks. I have the CD from the Barium contrast test with all images from last week. We’ve tried all simple remedies that I am aware of.

    Please Please Please someone help. My Dad is the anchor for all of us. I understand we all live and die but the amount of suffering I’ve watched my dad go thru is unimaginable. We need the Best or directed to the best with a swift/Quick appointment. We can not just go in to the ER for more surgery that isn’t defining the problem and destroying work that was so hard to get right. Any info is greatly appreciated.

    I did just secure an appointment with Dr.Bo Shen on dec 15th. I hope its not too late.

    Does anyone know anything about pouch prolapse?

    Or any helpful emails would be greatly appreciated.

    Please contact me with any Advice.

    Thank you so much for reading I know its long but its been a long six years for us.
    Positive Thoughts
    Nathaniel Freedom VanHoose
    Columbus , Ohio


  2. avatar

    Nathane says:

    December 3rd, 2010 at 12:45 pm

    Please report on your experiance with shin.
    Hes my dads only hope.


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