New Member, just had total colectomy with ileo-rectal anamastosis

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BrownEyedGirl85
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/19/2010 1:59 PM (GMT -6)   
 about a year ago I began have upper right quadrant abdmonial pain, and severe constipation, severe nausea/vomiting. I ended up in the ER twice due to the pain and had every test known to man (endoscopy, colonoscopy, gastric emptying, sitz marker, defacography). I was diagnosed with colonic inertia and finally came to the decision to to have surgery. I had a total colectomy with ileo-rectal anamastosis on March 4. Due to complications from the surgery they had to go back in on March 9. I was in the hospital for 2 weeks and could not eat anything during that time. While I can finally go to the bathroom again, I still can't eat hardly anything, am really weak and am  still in constant pain. IS this normal after this surgery? Evryone thinks that I should be 100% better now but I still feel horrible. Any help would be greatly appreciated. Thanks
 
 
 
 
total colectomy with ileo-rectal anamastosis 2010 ( colonic inertia)
endolymphatic shunt 2003 ( Meniere's Disease)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/19/2010 2:04 PM (GMT -6)   
The pain seems abnormal this far out from surgery. What type of pain, incisional? emptying? cramping? Sometimes eating makes things worse when you have had this type of surgery. You can order benecalorie. It's a 1.5oz liquid added to foods or beverages. Each portion contains 350 calories. This might help you to put on weight.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 4/19/2010 3:08 PM (GMT -6)   
Brown-eyed girl,
I had a total colectomy on October 26, 2009 and they had to go back in on November 17, 2009 due to infection. I just went back to work March 22nd. I was hospitalized 4 more times after the second surgery due to pain, vomitting, and dehydration. It takes awhile to heal but if you are having intense pain you should always get that checked out. It is very easy to get dehydrated without a colon so be careful of that. I had to go to the ER several times just to get fluids and pain meds. Also getting your energy back will take time. I didn't think I would ever have any energy again, but I am back to working out and feel great.
Jen

BrownEyedGirl85
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/20/2010 4:33 AM (GMT -6)   
 
 
 Sue Bear-
     It is kind of a crampy, sharp pain right under the bottom of my left rib cage. I also still feel bloated all the time. The pain gets worse when I eat or drink anything but is still there almost constantly.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/20/2010 4:47 AM (GMT -6)   
Have you let your doc know of this pain? Was your surgery was in 2010, right? That doesn't sound like surgical pain and should probably be investigated.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/20/2010 7:33 AM (GMT -6)   
I agree and think you should probably start with getting an evaluation by a motility expert. This could be continue motility disorder of the small intestine. I was thinking that the pain could be caused by adhesions but I don't think adhesions would be causing the bloating. Of course this could be two separate issues. Best to follow up with a GI who is knowledgeable in motility issues.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/20/2010 1:42 PM (GMT -6)   
BrownEyedGirl85
  I too have a total colectomy, was out of pain in 3 weeks, and they cut my abdomen...what kind did you have?
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


BrownEyedGirl85
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/20/2010 1:48 PM (GMT -6)   
 
 Mine was laproscopic.
 
   Does anyone know a motility specialist in SC or NC?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/20/2010 2:26 PM (GMT -6)   
The UNC has a motility specialist. Google motility disorders, north carolina and it will pop up.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 4/20/2010 3:01 PM (GMT -6)   
I saw the head of the GI motility disorder clinic at UNC for my second opinion prior to surgery. I will have to try to find his name. I can't think of it for the life of me. He was good and spent a lot of time talking to me and of course the exam. He also reviewed all records prior to my arrival. He knew everything about me without even looking at any notes. He was amazing.
Jen

BrownEyedGirl85
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/22/2010 7:36 AM (GMT -6)   
 
Thank you so much... I will have to look them up.... Do you think they would see me even though I already had a colectomy?
 
 1999 DX: Meniere's Disease
 2003 Endolymphatic Sac Decompression, Endolymphatic Shunt
 2003 Gallbladder Removed
 2006 DX: Generalized Anxiety Disorder
 2009 DX: Colonic Inertia
 2010 Laproscopic Total Abdominal Colectomy with Ileorectal Anastomosis, Apendectomy
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/22/2010 7:57 AM (GMT -6)   
Yes, they would see you. You have ongoing pain which might be a sign of immotility further up. Pain should always be investigated.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


BrownEyedGirl85
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/22/2010 1:22 PM (GMT -6)   
 
 Thank you all... Ya'll are such blessings.
 
 1999 DX: Meniere's Disease
 2003 Endolymphatic Sac Decompression, Endolymphatic Shunt
 2003 Gallbladder Removed
 2006 DX: Generalized Anxiety Disorder
 2009 DX: Colonic Inertia
 2010 Laproscopic Total Abdominal Colectomy with Ileorectal Anastomosis, Apendectomy
 

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