New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/21/2010 11:46 AM (GMT -7)   
I'm in the hospital now and going to be let go on TPN on Monday after they have been trying to get my system ready for surgery. I've been trying to get a Hospital to Hospital transfer to Mayo (I am in Kansas City) but my doctor here doesn't seem to be able to make the connections. Has anyone here tried to go to the Mayo to get a better picture on what surgery for fistulas would entail?
Dx with Crohn's Feb 2009, but was told that I had probably had it a long time.
2nd Flare-up Mar 2009 sent me to hospital where I perforated and got emergency ileostomy. Took down ileostomy on Jan 5, 2010. 28 cm active Crohn's terminal ileum. Strictures. Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs. In Hospital now

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/21/2010 12:20 PM (GMT -7)   
Mayo Clinic in Rodchester is suppose to be "the" place to be for crohnies. Are you at KU Med? Dr. Grizlano (I could be spelling that incorrectly, but that is how it sounds) at KU Med did his residency at Mayo.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/21/2010 1:19 PM (GMT -7)   
MMMNAVY:

Thanks for dropping the note. No, I'm at Saint Luke's in the Plaza where I went in to get healthy enough for fistula surgery. THey have been causing problems with my urinary tract. But they sent me home on TPN and some antibiotics and I didn't last 36 hours before I was distended and dehydrated and infected again. Came back in to the ER and have been trying to get to go to the Mayo because they say I'm a complicated case.
Dx with Crohn's Feb 2009, but was told that I had probably had it a long time.
2nd Flare-up Mar 2009 sent me to hospital where I perforated and got emergency ileostomy. Took down ileostomy on Jan 5, 2010. 28 cm active Crohn's terminal ileum. Strictures. Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs. In Hospital now

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/21/2010 7:55 PM (GMT -7)   
I was in better shape than you sound to be in 1978 when I released myself from my local hospital and flew to Mayo, Rochester, and reported to St Mary's Hospital Emergency Room. Two days later I had my resection - followed by a 20 year remission. Thank God and Mayo!!!!

If you are physically able grab all your medical records and films and get to Mayo. Good luck and God bless.
 
All the doctors at St Marys and Methodist hospitals are Mayo doctors. Methodist has no ER. You have to go to St Marys.
My computer says I need to upgrade my brain to be compatible with its new software.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/22/2010 5:54 AM (GMT -7)   
I think St. Lukes is not a great place to be, but I am a bit bias, at least the plaza is nice.  Is it still have alot of construction going on?  I wonder if you ask your GI to get in contact with DR. G and see if he can help?
 
 
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/22/2010 6:04 AM (GMT -7)   
ChronieToo:

Yes, another person mentioned to call hospital records downstairs to get a full set of medical records sent to Mayo. I never thought of having a real copy to carry around. I wonder what that involves.
Crohn's DX Feb 2009, but probably had it longer.
2nd Flare-up Mar 2009 perforated and got emergency ileostomy.
Took down ileostomy on Jan 2010.
28 cm active Crohn's terminal ileum. Strictures.
Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs. In Hospital now.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/22/2010 6:31 AM (GMT -7)   
smilewinkgrin   Probably a "hail" of a whole lot less than when I went to Mayo that way back in 1978!!! Remember how HEAVY those imaging films were? Ha! Now most places can provide those images on CD or DVD. And instead of a heavy folder of paper copy reports you can have them scanned at a Kinko's or some place similar or scan them at home if you have a scanner and CD/DVD read/write drive and take even the paper copy reports on CD/DVD instead. Mayo won't use your flash drive but they will use CDs and DVDs.
 
I so well remember being sick as a dog, weighing 89 lbs (usual weight for me was 110-115 lbs), carrying the HEAVY envolope of imaging films and a HEAVY envelope of paper reports, not just on the plane from our airport but also during a layover and transfer at O'Hare!!! Thankfully the airline was able to provide wheelchair service on such short notice thru O'Hare for me! I remember being short on cash and having absolutely NO IDEA what was a fair or reasonable tip for the Red Cap who wheelchaired me thru O'Hare from one terminal to another. I was so grateful to him!
 
And the shuttle driver at Rochester airport was just great helping me out. As were the staff at St Mary's ER when I got there w/my HEAVY goodies!!
 
I would have been sooooo grateful to only have a couple of CDs to carry!!! But CDs and DVDs didn't even exist back then. *sigh* But, obviously, I made it thru. We do what we gotta do. And sometimes it is amazing what we CAN do if we HAVE to and are DESPERATE enough!
 
Due to the short notice I gave everyone, including my husband, there was NO ONE to meet the kids at the schoolbus stop after school that day much less care for the animals and the kids whilst "we" were gone so poor hubby HAD to stay home and I HAD to go it alone. The Mayo docs were GREAT! They called my hubby the evening of surgery and the day after surgery to keep him informed of how I was doing and then I was able to take over and keep him informed by phone. I did take some needlepoint w/me that I had been working on at our local hospital so I had something to keep me occupied as I recovered and there was a yarn shop right across from the front door of St Mary's and the Pink Ladies were just GREAT about keeping me in stock w/yarn.
My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 8/22/2010 7:39:44 AM (GMT-6)


davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/22/2010 6:46 AM (GMT -7)   
MMMNAVY:
There is still construction going on but it's a lot better. The big parking lot they had cranes on seems to have turned into a building and the roads out and around the hospital are cleaned up. The on-duty surgeon just came by and I asked that all my medical records and images be copied and given to me for a trip to Mayo. I will probably be living under a bridge with my TPN bag at night until they are done with my diagnosis.
Crohn's DX Feb 2009, but probably had it longer.
2nd Flare-up Mar 2009 perforated and got emergency ileostomy.
Took down ileostomy on Jan 2010.
28 cm active Crohn's terminal ileum. Strictures.
Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs. In Hospital now.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/22/2010 7:27 AM (GMT -7)   
Good luck, David!!!! Mayo is a 12 hour drive for me from Michigan but well worth every mile of the drive! I made my first trip to Mayo when I was 16 to help my Aunt w/the drive. So I've been going to Mayo from Michigan for 52 years for family or myself. They are the EPITOME of efficiency! And they are cracking good doctors, techs and support staff.
My computer says I need to upgrade my brain to be compatible with its new software.

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/22/2010 7:54 AM (GMT -7)   
CrohnieToo:

Thanks so much for your words. I can't tell you how much I appreciate your supporting nature. Many times I feel like I'm all alone and desperate, especially now when a surgery might let me live a somewhat normal life if possible. As with many people in this forum, I am really frightened some times. I buck up usually after a few days, but sometimes I slip into week long depressions. I just now got my images on CD and I'm applying online now to Mayos.
Crohn's DX Feb 2009, but probably had it longer.
2nd Flare-up Mar 2009 perforated and got emergency ileostomy.
Took down ileostomy on Jan 2010.
28 cm active Crohn's terminal ileum. Strictures.
Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs. In Hospital now.

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/22/2010 10:15 AM (GMT -7)   
Hey Davidblink,

I live in Minnesota and everybody is right about the Mayo...it's the best! Please let us know of your progress and prayers go out to you and your family on a fast a safe trip there!
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/22/2010 10:20 AM (GMT -7)   
flowery:

I love the State! I love the fresh winters (if I can keep warm). Maybe I'll move up there when I retire although it looks like I'll have to be looking into disability if I don't get this fixed. Thanks for your thoughts, thank you ever so much.
Crohn's DX Feb 2009, but probably had it longer; emergency ileostomy for perforation Apr 09.
Took down ileostomy on Jan 2010. 28 cm active Crohn's terminal ileum. Strictures. Fistulas involving bladder. Occasional blockages. On TPN 12 hours/night. Remicade 1 on Apr 2010. Remicade 2 on May 2010. Then stopped due to infections. Currently Prednisone.

Glori
Regular Member


Date Joined Jul 2010
Total Posts : 42
   Posted 8/22/2010 10:39 AM (GMT -7)   
While Mayo is unquestionably ranked #1 in the US for gastroenterology, Barnes-Jewish in St. Louis is so close to you that I wonder if you have considered it?  According to this article, it is ranked #12 in the US:
 
 
Just a thought, in case your doctor is still having difficulty making a connection with Mayo.  I saw a couple of doctors at Barnes, and had surgery there.  I highly recommend them, especially if the travel to and from Mayo is going to be difficult for you to handle.
 
Good luck,
 
Glori

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 8/22/2010 10:53 AM (GMT -7)   
Glori:

Yes, I had heard of them while I was in the hospital this time. I put in for an appointment there too on Friday and hope that I might get in to see them if the Mayo thing doesn't work out. Thank you very much. If they call before Mayo then I'll jump right over there.
Crohn's DX Feb 2009, but probably had it longer; emergency ileostomy for perforation Apr 09.
Took down ileostomy on Jan 2010. 28 cm active Crohn's terminal ileum. Strictures. Fistulas involving bladder. Occasional blockages. On TPN 12 hours/night. Remicade 1 on Apr 2010. Remicade 2 on May 2010. Then stopped due to infections. Currently Prednisone.

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/24/2010 9:40 AM (GMT -7)   
Haha...Fresh Winters Davidblink?..more like Frozen! where I live there's enough ice at Halloween to ice fish some years. Yes, if you move to MN you need something to keep you toasty warm like a fireplace and fleece 10 months out of the year. We'd like to retire here too and maybe fix up a small cabin on some water.
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 2:29 PM (GMT -7)
There are a total of 2,735,493 posts in 301,310 threads.
View Active Threads


Who's Online
This forum has 151413 registered members. Please welcome our newest member, MamaPhoenix.
340 Guest(s), 14 Registered Member(s) are currently online.  Details
robotguy, tickbite666, Scaredy Cat, 1000Daisies, Girlie, reminder, getting by, Huddie, NiceCupOfTea, Jingles1234, Madcat25, quincy, k07, gilly2


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer