Mayo clinic again

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Regular Member

Date Joined Jan 2006
Total Posts : 135
   Posted 5/21/2009 10:30 PM (GMT -6)   
i posted a letter about a week ago on here not saying much because of pain.  tonight i am going to try again.  a little about me. in 02 had my large intestine removed, due to full of  ulcers and they put in a J-Pouch.  was on numerous drugs.  in 05 i was put on Remicade every other month i received an infushion.  it seemed to work great.  had some minor problems like leakage, urgency, i was told that was pouchitis.  with a round of steroids it went a way.  then in january i built up antibidies against the remicade, was put on Humira1 shot every other week.   then in Feb of 09 had lots of stomach pain.  found out it was partial blockage right before the J-pouch which would be the small intestine.  was in the hospital for 4 days no food and lots of prednisone,cipro and flgyl.  seemed to put me back in remission.  then about 15 days ago i came down with the same pain.  was addmitted to hospital with the same drug senerio.  surgens wanted to give me an illestomy and docs wanted to try drugs first.  my gi doc went on vacation the second day i was in the hopital and before he left he told me to go to the mayo clinic in rochester mn. 
    I did not want to for the simple reason is my family is here, my wifes family is here.  just less stress.  mayo clinic is 9 hours from home.  me and my wife are the kinda ppl that need morale support.  
   So we made up our minds to go to the right doctor.  that doctor is the one that put in my J-pouch in rochester.   Was discharged from the hospital in Bismarck North Dakota on Monday.  Tuesday we drove to mayo clinic, luckly we called our doc in mayo for an appointment and got real lucky and was given an appointment Wed 8:30 am.   Cool.  seen the doc yesterday and yes i have active chrohn's and bowel abstruction.   He wanted me to have a cat scan done soon as possible, they said the eariest would be Friday.  i said come on get us in earlier.  they told us we could sit and wait to see if we could get in.  we said sure we will sit and wait.  the wife and i both prayed and 2-3 hours later i was booked for a cat scan.   that went well, the next day i was to get an endocscopy.  cool things are working in our favor.  so today i had the endoscopy.  i walked in and could not walk out.  the reason is the air in the test made me double over in pain.  so this after noon seen the doc here in Mayo clinic.  we  talked about my diagonsis.  which is Blockage right before the J-pouch.  Recomondaton from doc and surgeon is as follows.  get the bloating down first or should i say get rid of the air by giving me steroids.   If that does not work put a darn NG tube in me.  Then on Tuesday becaouse of the holiday weekend do surgery, which is cut me open then remove the block part of my small intestine.  Good now i am on the right track, finally after 3-5 months of crap in our lives.  so tonight i am hoping my excess air disapates so no NG TUBE.  i hate them darn things.  yes i know they need to relax my small intestine before surgery.  so my doc says. 
     After my finding out about remicade my life was almost normal, now this.  what next.  it is kinda depressing why me crap.  what is really helping me out is seeing ppl down here at Mayo are the really sick ppl.  ppl that are sick by site.  like ppl with missing legs, cancer ppl etc.  so it could be worse.  and the good lord gives it to the strong ones.  i could not imagine if my brother or sister had to deal with what i am dealing with.    you defenitely neeed a higher power (whom i call GOD) to get you threw the hard times.  
sorry for such a long letter.  hope it made sense this time.  PRAY FOR ME  bill w.  yeah

Forum Moderator

Date Joined Nov 2003
Total Posts : 7056
   Posted 5/21/2009 11:07 PM (GMT -6)   
Bill - my thoughts will be with you as you await your surgery. I too hope that you can avoid the NG tube but if it ends up you needing to do it - then you will and survive that too. Stay strong -- we are here for you!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 5/22/2009 5:44 AM (GMT -6)   
I wish you all the best Bill. I'm really happy to hear that you will fight this darn disease to the end.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 5/22/2009 11:39 AM (GMT -6)   
Hey Bill, stay strong, you're with the best GI docs in the world. I've been to Rochester, we're lucky to have such a place to go to. Of coruse, I'm from Canada so I could never afford surgery there as I have to pay cash. I paid about $5,000 for my consults/tests and it was worth every penny. I think you're going to be fine.

And yes, don't pay attention to when the scheduled tests are, just go to the department and camp out and they'll fit you in.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 9mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.

Go Saskatchewan Roughriders!

Regular Member

Date Joined Apr 2009
Total Posts : 45
   Posted 5/22/2009 5:23 PM (GMT -6)   
thoughts and prayers coming your way...the way God has been faithful on your visit thus far, I know it will go well!

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 5/22/2009 5:51 PM (GMT -6)   
Good luck and God bless, Bill. You are in great hands at Mayo, Rochester. My gastro there is Dr Tremaine. I was just there last October/November. I had my resection there and tho it was my most major and serious surgery it was the easiest recovery of any of my 3 surgeries.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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