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Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 7/14/2009 2:33 PM (GMT -6)   
My wife, Jan625, passed away last night after two years of operations, multiple tests, pain, and diminishing health.  Never will I trust a doctor again. 

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 7/14/2009 3:01 PM (GMT -6)   
i'm so sorry to hear this!!

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/14/2009 3:43 PM (GMT -6)   
oh man, sry to hear...
hospital name? would like to know so I can stay away from bad doctors.
31 years old + married with children.
--
Ulcerative Colitis cause: In early 2003 I took Accutane for 4 months, permanent side effect resulted in 1 year of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC (should have never taken the dangerous drug known as Accutane).
May 2004- May 2009: Prednisone, Asacol and others meds that did not work well-Remicade was great for 16 months then stopped working.
---
May 8th-June 24 2009: Pancolitis- active chronic 2 month flare up.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: 5 years of suffering from Ulcerative Colitis, Anxiety and depression.


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 7/14/2009 4:23 PM (GMT -6)   
How sad.. I am so sorry that you lost your wife! Can I ask what surgery she had done.. and complications? Please share for us who are new and didn't know your wife.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/14/2009 6:00 PM (GMT -6)   
I am very sorry to hear of your loss.

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 7/14/2009 6:40 PM (GMT -6)   

I'm so sorry to hear about your wife; you and your family are in my prayers.

Peace and prayers,

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/14/2009 7:27 PM (GMT -6)   
My condolences - my thought and prayers are with you and your family.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
   Happy SILVER Anniversary to me!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/14/2009 7:30 PM (GMT -6)   
i am very sorry to hear of your loss

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 7/15/2009 12:53 AM (GMT -6)   
I am so sorry for your loss. May God be with you.

Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/15/2009 1:37 AM (GMT -6)   
I'm sorry to hear that. Please feel free to lean on us as your wife would have.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 7/15/2009 11:48 PM (GMT -6)   
To help further the knowledge base for ostomates, here is a brief synopsis of her ordeal. Two years ago she had a bowel resection for a redundant colon. Unfortunately a suture failed and she got peritonitis which then turned into ARDS, placing her in ICU for a few weeks with a colostomy. After a few weeks her resection was reconnected and she came home. Within a couple of weeks she was again suffering from constipation, to which her surgeon's office responded, "take Milk of Magnesium." Unfortunately she was shortly suffering pain with the constipation and after pleading with her surgeon he grudgingly gave her a colonoscopy. This was after 2 emergency room doctors said she had a large polyp and one suggested she see her shrink and take valium. (Now you're beginning to understand my distrust of doctors.) During the colonoscopy, the surgeon found a 2&1/2 cm. solidified ball of barium in her colon that had drifted down against the ring of sutures at the reconnection site. This was the "polyp." The barium was from the original barium X-Ray she had before the original surgery.

She subsequently started suffering small intestine blockages. The last one didn't clear and she ended up in surgery again and left with no large bowel. The new ileostomy worked fine for a long time. Then she started having pains during stool passage at the ten o'clock position above her stoma. An ultra sound showed an undissolved suture in that location. After it's removal the ileostomy function went downhill. Poor or limited stool passage with bloating and pain that was sometimes severe. After myriad tests such as CT scans, barium follow thru studies, and consultations, the doctors decided function was satisfactory. How about the pain and bloating I argued, something must be causing that. They had no answers.

She had three stoma revisions to no avail. Vascular problems arose and she was scheduled for corrective surgery for that. But the vascular surgeon wanted the ileostomy problem corrected first to assure a health recovery. Next tests found she was suffering from chronic Pancreatitis. Enzymes seemed to correct this and the bloating and pain. Another barium follow thru was done to assure ileostomy function and the bloating and pain returned. I think the barium caused some untimely reaction somehow. She died in her sleep 3 days later after nearly constant pain.

What a snafu. The health system her utterly failed her and ruined our golden years. She was 65 years old. I failed her, too. I couldn't get these idiots to think outside the box.

Sue030509
Regular Member


Date Joined Jun 2009
Total Posts : 39
   Posted 7/16/2009 7:20 AM (GMT -6)   
This is a terrible loss. The parnters and those that love us suffer so much along with us. Thank you and your wife's story. You are in my thoughts.

Sue UC 2003 Ileostomy 2009

nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 7/17/2009 1:05 AM (GMT -6)   

I am so very sorry to hear about Jan's passing.  Please accept my sincere condolences.  I corresponded with Jan a bit regarding her problems with hydration.  I was the one who tried the octreotide injections to try to slow the motility of my remaining digestive tract, something that Jan was looking for information about at one time.  I realize she had just an awful time these past couple years.  Please don't think you've failed her, you obviously were her advocate and she spoke highly of you.  My heart goes out to you.

 

NG 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 7/17/2009 4:43 AM (GMT -6)   
I am very sorry to hear about your loss and more pained to how much your wife suffered because of medical negligence. I know it is difficult to make up her loss, but you have to learn to live with this loss and move on with her sweet memories she has left behind.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/19/2009 7:51 PM (GMT -6)   
TO HUSBAND OF JAN625,

What state was your wife's surgery in? Please let me know. I had very similar experience minus the barium and minus the pancreatitis. I was dx'd with a redundant sigmoid colon on a defecogram test. Surgeons removed my sigmoid and where they put the ends of the colon together, a severe stricture formed narrowing my colon to only 4 millimeters. They dx'd this with a gastrograffin (water soluble enema contrast xray) and just left me this way. They also did 4 other unconsented procedures. Massive internal scarring further lead to permanent loss of my pelvic muscles, rectum, and for 7 months the loss of use of my small intestine. I had to see 11 specialists across the US before one surgeon did the only thing that could be done to save my life, small bowel adhesion take down and a permanent ileostomy. Upon medical review of my case it was found that the original defecogram image test report was wrong, I did not have a redundant sigmoid colon in the first place. So all this was for naught. All I needed fixed was a rectocele (bulge in the back of the vagina which makes a dip in the rectum and was the cause of my initial issue of stool trapping.) THis could have been fixed vaginally without making any small bowel adhesions. A number of other patients critically injured by the two surgeons I went to. I need to know what geographical area your wife's surgery was done at. There may be a larger number of people who have suffered and died at the hands of my 2 surgeons. BY ARDS did you mean ARD Adhesion Related Disorder (meaning adhesions on small intestine.) ? I am extremely sorry for your loss. Sincerely, Sweetpea

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 7/20/2009 10:03 PM (GMT -6)   
I'm sorry to be so blunt, but I get really pissed when I hear things like this! I am so so sorry for your loss!!! I am sure she was was a wonderful woman!  God bless you and your family!
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