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Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 6/3/2010 1:22 PM (GMT -6)   
     I am scheduled to undergo a perm ileo on June 28th.  Is that the same as a total colectomy?  Right now I am flaring, ulcerative proctitis, and had to go back to 40 mgm of prednisone or wind up being hospitalized.  The bleeding has stopped but I still have terrible urgency and pressure, no formed stool.  I was up half the night after eating a low residue diet yesterday too.  I am 63 yrs old and the surgeon will not operate unless I pass a stress echo.  I have situs inversus (all my organs are reversed).  I had the stress echo on Tuesday and I believe the technician was inexperienced in dealing with people with situs inversus and my cardiologist said it didn't meet the standards where he would comfortably say I am  ready for surgery.  This has added to my anxiety.  Apparently, the frontal lobes of the heart didn't have a clear reading.
     Did you have to undergo such vigorous testing prior to surgery?
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/3/2010 7:54 PM (GMT -6)   
Christine,
I did not have any vigorous testing before surgery, but maybe that was because I didn't have any other health issues except for Crohn's. Can you ask to have the stress echo repeated?

Have you ever tried taking a couple of Imodium before bedtime? That used to help me get a few hours of sleep when things were flared up.

A total colectomy is when they remove the large intestine and leave the rectum.

Please keep me posted on what happens.

Hugs,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 6/8/2010 7:53 PM (GMT -6)   
     Sorry this is late in reply.  Our computer had a virus and we just got it straightened out today.
     I have ulcerative proctitis and have become prednisone dependent over the last few years.  Sometimes I wonder if I have made the correct decision as reading some of these horror stories with complications following surgery really scares me.  about every other day I will have urgency issues.  My stools are soft, not really formed.   Depending on my diet, if I am BAD..lol...I pay dearly for it.  I feel constant pressure in the rectum.  I did take 2 teaspoons of liquid Immodium this morning after going about three times and I needed to get out of my house at 9:30 am.  The prednisone has stopped the bleeding.  I was tapered down to 7.5 mgm but the week before Memorial Day my flare worsened and I phoned the surgeon's office and was told to increase the prednisone in order to stay out of the hospital.  I increased it to 40 mgm (the dose my GI usually starts me at) and the bleeding stopped.  I am now tapered down to 35 mgm and will stay at this for five days.  I know the surgeon wants me on as little prednisone as possible going into surgery.
     I am scheduled to undergo a Nuclear stress echo next Tuesday.  This has me concerned because I don't like the idea of a dye being injected into me and it most likely will go through my intestines and I have no idea whether that will affect this flare.  I talked with the technician who will perform this procedure and she said it SHOULD have no effect...BUT does she know that for sure??  I am just so frustrated at this point.
     I know they will have to take out the rectum...that is my main problem.  If they could just take the rectum out and leave the colon, that would be great, but according to the surgeon, that is just not done in patients with ulcerative colitis.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 6/10/2010 11:26 AM (GMT -6)   
I dont think the Sinus Inversus should effect your surgery, but clearly your physician should be familiar with it. It probably wouldnt be too good for him/her to open you up and have everything on the wrong side.

Do you not qualify for a J-Pouch or K-Pouch? I had UC for 12 years. Im currenly living with a temp ileostomy. I know your really questioning if going from a colon with UC to an ostomy is the right choice. I can tell you without a doubt, its superior to living with the UC. Its clearly the lesser of the two evils.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 6/12/2010 7:54 PM (GMT -6)   
     Situs Inversus is very rare.  Yes, my surgeon is aware that I have it but don't know if he ever operated on anyone who did have it.  This is very scary to me.  I will remind everyone a million times, don't worry..lol.  My appendix is on the opposite side too, so I guess I will be somewhat of a challenge.  Hope I am making the right choice.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 6/13/2010 7:38 AM (GMT -6)   
am a little confused cecilia(or any1). Wats the diference betweeen a Colectomy aaaand a protocolectomy? which one am i having? lol. i jst say colon/rectum removed..

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/13/2010 7:43 AM (GMT -6)   
When your colon and rectum are removed it is a Proctocolectomy.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/15/2010 6:09 AM (GMT -6)   
...and when they remove the colon and leave the rectum, it's a Colectomy.
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 6/15/2010 6:12 AM (GMT -6)   
got it
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