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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5958
   Posted 6/18/2010 6:23 PM (GMT -6)   
     You have listed...blockage/ileo revision....what happened there?
 
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

 


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 6/19/2010 8:35 AM (GMT -6)   
about two weeks ago I had a blockage. I called my surgeon and he admitted me to the hospital. They tried to wait it out and give me pain meds to see if it would fix itself, but it didn't, so a day later they did surgery to fix it. It turns out that my intestines got twisted/got a kink right by my stoma, and they ended up redoing my whole stoma. It sucked, I'm not going to lie. But it's not a very common problem, so you really shouldn't worry about it.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5958
   Posted 6/19/2010 9:19 AM (GMT -6)   
     ew boy.  The only thing that concerns me is the fact that all my organs are reversed.  I am actually a mirror image of the "normal person".  Don't know if my surgeon has any experience in performing a perm ileo on anyone with my condition as it is extremely rare.   Years ago I underwent fluoroscopy...not sure if they even do that anymore because of the radiation....and everything seemed to be in functional condition...only on opposite sides..lol.  I will have to remind them a dozen times not to look for my appendix on the right side because it is on the left.
 
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

 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/19/2010 10:00 AM (GMT -6)   
Chris,

Write it right on your body in pen that your organs are on the opposite sides of you. You are right. This is something that needs to be addressed even while you are "out". So write it write on you. THey can't miss it.

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/19/2010 10:04 AM (GMT -6)   
Sephanie,

WHAT TEST DID THEY DO THAT SHOWED THE KINK BEHIND THE STOMA??????

Reason I need to know is that I have had 3 food blockages in 3 years from very bland foods (mashed potato and cottage cheese).

This Wed I'm going for a CT Enterography scan. Non-invasive but oral and IV contrast dye. It is supposed to show possible narrowing or possible kink/twist.....but the kink/twist would only show if I was having an "episode." I luckily resolved all 3 food blockages with grape juice and hot tea, but it could not have worked out that way.

If you can let me know how they found this out I'd appreciate it. Also what exactly were your symptoms? effluent not passing and distension?

Weren't you the person who worked as a dancer at Disney World? Or do I have you mixed up with someone else?

Best wishes to you. I hope the kink is fixed for good.

Rosemary

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 6/19/2010 4:08 PM (GMT -6)   
Rosemary,
The test you are having is the one they did for me. I was barely able to drink 1/4 of hte contrast because I thought I'd throw it up, but they were still able to see enough to know what was up. What happened was I woke up one morning with what I thought was just an annoying stomachache caused by gas. Then it just didn't get better all day and finally the pain got so bad that I called the surgeon. The pain was coming in waves and I was having almost no output. I was also becoming increasingly nautious. He decided to admit me to the hospital, and they did an xray and the CT scan. Then they put me on pain meds (thank god! by then the pain was AWFUL). Then the next day they did surgery.

Yes, I dance at Disney...when I'm not recovering from surgery! It seems like I'm never going to get back to work...if I had a more sedentary job I'd be back already. :P
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/19/2010 4:18 PM (GMT -6)   
Stephanie,

Thanks for the info. Glad to know that I am having the same test you did and they found your issue. What was the cause of your twist?

Was the contrast Volumen by any chance? I am not acute and am just eating lightly, so am basically OK now. My CT Enterography is to check for narrowings due to having had 3 stomal food blockages on bland foods in the past. The radiologist said go REAL easy on breakfast that a.m. and do no drink or eat anything 4 hours prior to the test. He said come hungry and come thirsty. Is it thick gross contrast?

I am wondering if my issues were temporary twists that may have untwisted themselves. I know I had to drink a TON of tea and keep walking for 10 hours. THen the mashed potato literally exploded out of my stoma all at once. Man that was a relief. I'm glad I'm having this test. I gotta find out what is up.

I hope you recover and have no more issues and can resume your dance career. You are so young to be dealing with all this.

Best wishes. Rosemary

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 6/19/2010 7:47 PM (GMT -6)   
I don't know what the cause was, Rosemary. I guess it's just a thing where my intestines were trying to move back to their original position or something? I'll have to ask my surgeon at my post opp.

It wasn't thick contrast, but I don't know what it was. It was kind of like some sort of tea that was flavored (poorly) with some sort of berry.

I hope this is it too...ready to get back to life. I barely even remember what that's like.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

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