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runningrd
Regular Member


Date Joined Mar 2005
Total Posts : 76
   Posted 4/8/2010 3:25 PM (GMT -6)   
I am scheduled to have a partial, possible subtotal colectomy next month.  For 7 yrs been to many dr's....told ibs...the usual story.  Anyway had a colonoscopy and barium enema in Feb when it was discovered my problem is related to a dilated colon which is extremely long and redundant (colonoscopy was difficult for md, had to remove 1 L fluid even after drinking go-lyltely, the barium exam was another difficult case for the radiologist).  I have had ever other test, all normal except colon transit study.  Gastric emptying normal, small bowel follow through normal (although that one was 5 years ago).  Anal manometry normal.  Had enterocele and rectocele repair about 1 yr ago, no help for the constipation.
 
So my questions...
Anyone have this surgery for this sort of issue (I don't have CI)
I just started a new job...need to get back asap, am I being unrealistic thinking 3-4 weeks(surgery will be laparoscopic)
I am an avid runner (40-50 mpw, which by the way is my laxative of choice).  When will I run againsad ??
 
Any help?  By the way, my left side looks healthy and I will probably keep a good portion of it.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/10/2010 5:15 PM (GMT -6)   
runningrd~sorry, I don't have any answers for you since my dx is Crohn's...have you been to the "Total Colectomy" threads?

just wanted to bump your thread!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


elizedge
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/11/2010 1:55 PM (GMT -6)   
I had a redundant colon, no other health issues (ci, uc, crohns, nothing) the doctor thinks was caused by a lifetime of high fiber, imagine that! Extra 3 feet of colon twisted and blocked, had an emergency colostomy with removal of most of the redundant (she left a little in for the resection) I am believing for a hookup in June, gotta have my first colonoscopy in May, but the pathology on the removed section was normal- I am doing great with the colostomy, be happy to share my experiences with you if you want. God bless...

elizedge
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/11/2010 1:58 PM (GMT -6)   
ps,I had emergency unprepared open surgery, left the hospital 5 days post op, I was back at work part time after three weeks and full time after five, I am 53, overweight and out of shape, you'll be fine- walk walk walk.....

runningrd
Regular Member


Date Joined Mar 2005
Total Posts : 76
   Posted 4/11/2010 6:05 PM (GMT -6)   
Thank you so much for responding. I'm hopeful that since I don't have other health problems that I won't have too hard of a time recovering. They told you your long colon was from fiber?? They have no explanation for me other than I was born this way. The funny thing is I had no problems for 33 years. It started about 6 months after having my son. Everyday symptoms when he was about 4 (he's 10 now). I am 43, been a runner for 20 yrs. I'm 5'4 and about 108#....they are amazed at how much colon I have in a small space! I'm feeling more relaxed now, and excited to get this miserable colon out of me! I'm bloated 24/7. Did you have any changes in wt after your surgery? Are you following the low residue diet? There is no plan for an ostomy for me, well less than 5% chance I was told.

Thanks for the encouragement:)

elizedge
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/11/2010 6:15 PM (GMT -6)   
nope, I can eat anything I want, no restrictions at all, the surgeon DID recommend I peel my fruit once in a while but otherwise none. I feel like a million bucks, I was bloated and in pain but after so many years (I had my gall bladder out at 17) I assumed once a week bm was normal for me, along with menopause, etc. The bloating finally got so bad my back went into spasm (I don't have back issues) I had to go to the ER and that's when they did a CT and found 3 feet extra colon, and it had wrapped around itself and twisted- I have a very cooperating sigmoid (low) colostomy, very firm stool, so I use closed pouches, usually one-piece but I am trying some two piece- my belly is soft and the flanges seem to rock around and I have tried maybe 10 different kinds of 2 pieces but they all lift away from the stoma after a day or two- but I am alive! (the bag or the box as they told me!) and should be fine after the second surgery in June. I will keep everyone posted because I haven't found anyone else that has had what I have dealt with, they all seem to have not enough colon, and other issues that compromise their recovery, chemo, crohn/s etc. Make sure you search and read around, there are about 4 or 5 boards/forums that all have different and wonderful people on them.
I am overweight, lost about 10 pounds in the hospital but have gained that back :( I expect I won't be eating much after the second operation, but I am living one day at a time right now, free from pain! I HAD to have the colostomy because my colon was so swollen (I saw pics) you could put a football thru it and it has to shrink down to be reattached.

HopingForAnEnd
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 4/11/2010 7:07 PM (GMT -6)   
I am looking at having surgery for the same exact reason. I have had horrible issues for as long as I can remember. I am 32 years old and the farthest back I remember was being 13 although my mother said that she used to give me suppositories.

I am still in the testing phase though to see if there are any other problems. My problem really intesified last year when I had surgery to repair a very large rectocele and a urethral prolapse fixed. During surgery he also found my bladder to be low, however opted not to fix this yet, my uterus is 50 percent down the cervical canal. After that surgery I had horrific rectal pain. I was in tears just trying to go to the bathroom. GYNE had no idea what was wrong.

Finally this year I went to a colorectal surgeon who understood exactly what I was talking about and so he did a colonoscopy. After he said my colon was one of the longest he had ever seen. Especially for my age he is said he was stumped. He thought maybe I had Hirschprungs disease but I don't. I just had an anorectal manometry and defecography. I don't have CI either as my marker test was normal except that they were all stuck at the bottom. I never get the urge to go unless I am cramping severely and this has really put a damper on my life since the last surgery. I havent spoken to the doctor about the manometry yet as he was out of town this past week but I had a rectal canal that was at the highest point of normal and my rectum could only handle 90 cc of the fluid filled balloon whereas a normal person can handle 180-200. So not sure what this means and I havent gotten the results of the defecography back yet. When are you thinking of having the surgery? I will definately do it if it is an option for me because I am miserable.

I am glad you posted because I cannot find anyone on the internet that was having surgery for this reason with there being CI.

elizedge
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/11/2010 7:24 PM (GMT -6)   
The plan is I have my first ever colonoscopy scheduled for May 10 (prep is a little easier with a bag, I have heard- no butt burn! hehe) then back to the surgeon, she will let me know. I am hoping for June 17, got a kid graduating high school right before then, actually she told me I had to wait three months, that would have been early May but I also have a teacher-daughter who will be out of school so ANOTHER daughter in CA (I am in FL) won't have to some here to take care of my 15yo son while I am int he hospital. I have no idea what to expect, again, because I have no other issues. I hope to get more from the surgeon in May when I see her again.
I tell you what, I feel so amazing, I encourage you, even if you wind up with a temp colostomy (and you said there is no reason to think that) it is SO worth it! I thought I was lactose intolerant, I had nasty symptoms for three days after eating even yogurt, guess what? I'm not! God bless cheese again, after 5 years milk-free!

runningrd
Regular Member


Date Joined Mar 2005
Total Posts : 76
   Posted 4/11/2010 8:10 PM (GMT -6)   
Bag or the box...too funny! I'm glad to hear you're doing so well. I wish you all the best with your reattachment surgery. I'm counting the days to mine. I'm scheduled for May 5th. I have to "eat light" the weekend before and then do 2 days of golytlely and clear liquids. I am not looking forward to that! I'll be so weak going in. My parents (who are in their 70's) will be helping to get me to the hospital (glad they're in pretty good health:)) I'm worried about losing too much weight because I don't have much to spare now. Plan on adding Ensure the week before. Please let me know how you are doing. I'm so glad to hear you are feeling so much better. For years a Dr told me I had IBS. Finally nice to know what the problem is and FINALLY get by life back soon. Take care!

elizedge
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/11/2010 8:15 PM (GMT -6)   
will be praying for you that your surgeon has genius in their hands!
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