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Posted 12/24/2012 1:30 AM (GMT 0)
Last night no sleep. At ER 4 am. Drain tube installed. Stoma actually disappeared into body when tube was put in by a resident. This is how i was left out west. Written up as stoma obsessed...............well i need to be able to eat! Hired nurse flew east on med evac plane and i have appt tomorrow. I pray that something can be done. I pray that there is ano answer for all this scar tissue. Have lost sooooo much weight. Out west horrific experience medically. Wish me luck. Failing fast. Soo hungry. RJ
Posted 12/24/2012 3:33 AM (GMT 0)
Hi Rosemary:
Glad to hear that you are safely back home. As Dorothy of The Wizard of Oz was known to have said: "There is no place like home."

I hope that the consultation tomorrow sheds some beneficial insight on your continuing stoma saga.
Posted 12/24/2012 4:05 AM (GMT 0)
Been thinking about you Rosemary & was wondering about your appt. tomorrow. Definitely keep me/us posted as to what he says. I hope he can shed some light on what is going on and what it will take to correct the mess that has been made!

Hang in there.
Posted 12/24/2012 6:12 PM (GMT 0)
     Hoping and praying for your recovery Rosemary.
Posted 12/24/2012 10:17 PM (GMT 0)
What a mess. I am about 400 miles from home. The staff here and the doc seemed very nice and very knowldgable. He says he works with and knows the doc i just came froma and asked if there was a probleme and i said no no issue but had to leave and start things rolling on getting a working stoma. He wants me to have twesting and biopsies for possible late in life chrones. He said the ulcerationas in my stoma after the crack of this time from the reaidents finger should have gealed by now. Plus we changed the appliance and he we found out that the resident in the er out west had actually stitched a string right thru the stoma that holds the tube in in addition to the strings that are just suspended from the bag. They said never pull that string out because it will cause a bowel blled. Jeezer everything done out west just made things worse and worse. I have to wait 6 months to have a revision and he would need to do it open surgery and put the stoma in the other side. He uses all methods of adhesion lysis including electrocautery (this had been shown to cause inflammation and more scarring). I did not hear from any if the oither consults i mailed to (records mailed) and follow up calls. I have to live on clear liquid nutrition that is the only thing that fits thru the drain tube. Or get TPN. He said he did not know any gi's in massachusetts. So where on earth do i get tpn at home. He said that at home? Thia is horrid. What a disaster! But he is willing and does have a plan. But how do i last 6 months? RJ thx for thoughts.
Posted 12/25/2012 12:16 PM (GMT 0)
Rosemary, so sorry you're suffering so much.

I think that MGH, the Brigham, and Beth Israel all have centers for IBD (Crohns and colitis). My gi just moved from MGH to the Brigham to head the center there. The center at MGH is very nice, it's away from the main hospital.

There are many gi's in Boston who specialize in IBD. If the Crohn's hypothesis is serious, not just stabbing in the dark, then you want a gi who specializes in IBD -- they know way more.

Hang in.
Posted 12/25/2012 12:33 PM (GMT 0)
How do i find a crohns gi specialist?

Rosemary
Posted 12/25/2012 1:08 PM (GMT 0)
Rosemary,

As I said, there are a lot of them.... look up gi docs and their specialities, and look for ibd, crohn's, or ulcerative colitis on the list. Crohn's and UC together are called inflammatory bowel diseases (IBD, not to be confused with IBS -- irritable bowel syndrome -- which is different). GIs won't specialize in just Crohn's, it'll be IBD.

Here is the link for MGH: http://www.massgeneral.org/digestive/services/treatmentprograms.aspx?id=1301

Brigham and Women's: http://physiciandirectory.brighamandwomens.org/directory/list.asp?dbase=main&setsize=30&sskeywords=44&hold_sskeywords=39
Beth Israel: http://www.bidmc.org/Centers-and-Departments/Departments/Digestive-Disease-Center/Inflammatory-Bowel-Disease-Program.aspx
Posted 12/25/2012 2:03 PM (GMT 0)
Great thanks. Can't go to mgh as that is where they put me in the psych ward as they did not understand thw complications from the original pelvic floor surgery that lead me to ostomy, and ca't go to !righams for reason of the original defecogram scan read wrong there and some follow up issues but maybe bet israel as they woild likely just deal with the current issue at hand. Thx for the links. RJ
Posted 12/25/2012 3:15 PM (GMT 0)
Here's Tufts too: http://www.tuftsmedicalcenter.org/OurServices/SpecialServicesandCenters/CenterforInflammatoryBowelDisease/

and Boston medical: http://www.bmc.org/digestivedisorders/services/inflammatoryboweldisease.htm

UMass: http://www.umassmed.edu/gastro/research/ibd.aspx (this is a research site, but they do treatment too).

You're welcome.
Posted 12/25/2012 3:46 PM (GMT 0)
I have to get on this when i get home i am going to die. Could hardly walk down the street.

Have youbever heard of a stitch sewed into a stoma to hold a tube in?

Rosemary
Posted 12/25/2012 8:12 PM (GMT 0)
OK so i left message to see the stoma nurse hEre tomorrow and the gi doc before going home to mass. Gkad i did as the stoma that the resident put the tube in out west on 23rd recessed immediately after. I emailed the west doc as i have been told not to do but at this pooint whalt can they do to me. I basically said my new doc and nurses and stoma nurse and i all thought the stitch was sutured in. The western resident said no no i just layed the support string acriss the face plate. How extra strings are suPposed to go in looped around the plate not layed over the stoma. So yesterday and today the stoma is really swelling and the the area under the string is all white like a big scar on the stoma. So if the string is really laid across the faceplate then as the stoma swells the string is cutting down thru the stoma. Not a happy thing.

The west resident also said the doc out there just offered to admit me if i am so weak and rehydrate me. Come on! It is xmas and getting readmitted takes ano act if god! They are so back peddling, biut u have to just keep focused on the current issue not all the cr-- that is whirling about. I would live to be having a normal xmas. RJ
Posted 12/26/2012 1:21 AM (GMT 0)
Drain tube plugged on just a chewable vitamin and a chewable calcium pill. I had a lot of gatorade and water. I do not see why the chewables did not dissolve. I am praying that these chewables pass thry the drain tube. The west docs office said the idea was not to constantly wear the tube but if i don"t in a day or so i back up. Then the next tube in is smaller because the hole in the stoma is shrinking. I have no clue if thos will move thru tongith and i am out of grape juice. Should have gotten some today. That usually works no matter what. Rosemary
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