Total Colectomy... Part 12

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TGandJsMom
Regular Member


Date Joined Sep 2006
Total Posts : 41
   Posted 9/11/2006 10:29 PM (GMT -6)   
Ok, so they locked us out of Part 11 so I started 12...
 
Amey... thanks for the childbirth comparison...  I did 3 labors totally without meds...36 stitches on the last one, and I survived...  one bad day of my life and a little soreness after, but my body healed..
 
So you were in the hospital for 9 days, huh?  My doc keeps telling me that I could be out as quickly as 4 days if everything is perfect, but I just have NEVER heard anyone else say anything less than 6 days.
 
And about the monometry...  yeah, I have had it done 3 times now in the last 6 months...  all of the pelvic floor testing, the ARP, the defecography (tres humiliating..lol), biofeedback, etc etc etc and more barium shot inside me than is probably advisable...lol
 
I was just wondering about the gallbladder, or rather my lack of one and if it will end up giving me a more liklihood of having diarrhea or at least the butt burn, or if it dosen't make a difference???
 
Thanks guys!

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 9/12/2006 1:43 PM (GMT -6)   

Hi vandgsmom,

I had the total colectomy surgery a year ago this week.  I had my gallbladder out 18 yrs ago.  I have butt burn but I don't think it is specific to the lack of gallbladder.  All of us have had it to some extent.  The acidity of the stool without the large intestine is different than before.  I was in the hospital for 3 days, I went home and was readmitted with an ileus the next day.  I was in for a total of 6 weeks due to an undiagnosed herniation and perforation.  Once it was diagnosed, I was operated on again and ended up with an ileostomy.  I am not representative of the usual cases here.  Why would they already give you a 50% chance of ostomy?  It's not the usual with this surgery.

Cathy


wmnak
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Date Joined Jul 2006
Total Posts : 1123
   Posted 9/12/2006 5:20 PM (GMT -6)   
"Short" hospital stays do happen.  I had APR surgery, long incision, Feb 20th - went home Feb 24th.  Back to surgeon's office Mar 2nd to have staples removed, then out to lunch.  Truly Blessed!  Good Luck .... :-)

Nonna
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 9/16/2006 11:26 PM (GMT -6)   
Hi Vandgsmom:  I had my surgery on 31 Jan 06.  I am also from Texas.  I had my surgery at Baylor Medical Center, Dallas, TX which is about a three hour drive from where I live.  I was in the hospital 14 days.  It was the best thing I have ever had done.  I was soooooo nervous and had MAJOR anxiety.  I wore an NG tube for six days and it was not bad at all - I was really dreading it, but it was fine.  My scar in 14 inches long from my hair line up to just below my breast.  They used some kind of glue and it is really not an ugly scar and as a matter of fact, I am kinda proud of it.  The problem I had was all the pain medications, I cannot tolerate alot of medications and they made me wild and panic.  I had alot of anxiety attacks and it was due to all the medications.  After day four, I refused to take any more and things started settling down.  I had a rectal tube as well and that came out on day three.  Once that came out, I started having D, sometimes as much as 25 times a day.  It all slows down and now I go maybe 2-3 times a day and there is even sometimes it is solid.  However, the last two days, I have had D and it is like everything I eat goes through me.  Once I started eating in the hospital, I developed an ileus and then finally everything started working again. After I came home, I got a urinary infection and started having MAJOR bladder spasums.  I kept thinking it would go away and after about four days of not eating and hurting I was in really bad shape and had to be admitted to Baylor again and stayed another week.  Since then everything has been fine.  I feel like I have my quality of life back and am glad I did it.  Even though it was rough at times, I would do it again.  Just do what they tell you to do and be patient.  That was the hardest thing for me.  Good luch and may God bless you. 

Holly73
New Member


Date Joined Sep 2006
Total Posts : 12
   Posted 9/17/2006 7:15 AM (GMT -6)   
Hi everyone, i am new here and trying to read up on everyones experience as i am having a total colectomy on Nov 29th, so any advice from anyone would be great and if i think of any questions in this time i hope you all can help me out, i am 32 female from Sydney, Australia and have noticed most ppl are from US but that doesn't change the experience to much i don't think, so if anyone would like to leave some advice etc that would be great and i hope to be talking to some of you soon, Thankyou all for being so open in what you all experience and what a great place to be while going through something like this Thanks all.

Post Edited (Holly73) : 9/17/2006 7:26:39 AM (GMT-6)


wmnak
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Date Joined Jul 2006
Total Posts : 1123
   Posted 9/17/2006 9:55 AM (GMT -6)   
Welcome, Holley!  It's great that you have a couple of months to educate yourself ... which is the best advice anyone could give you.  If you were in the states, I'd giggle and tell you the timing was perfect to allow you an enormous Thanksgiving Dinner, lol.
 
Ask away ... there's nothing like hearing a personal experience.  Keep checking the internet: UOAA, Ostomyland, Shaz (in Aus), etc, etc - all valuable sources of information.  The preference is for a qualified colo-rectal surgeon and ET nurse, you can find them via their professional organizations online.
 
Good Luck!  Let us know how we can help ... :-)

Holly73
New Member


Date Joined Sep 2006
Total Posts : 12
   Posted 9/18/2006 3:19 AM (GMT -6)   
Thanks heaps wmnak, just nice to know their are people to talk to, and thankyou for the welcome..... tongue
wmnak said...
Welcome, Holley!  It's great that you have a couple of months to educate yourself ... which is the best advice anyone could give you.  If you were in the states, I'd giggle and tell you the timing was perfect to allow you an enormous Thanksgiving Dinner, lol.
 
Ask away ... there's nothing like hearing a personal experience.  Keep checking the internet: UOAA, Ostomyland, Shaz (in Aus), etc, etc - all valuable sources of information.  The preference is for a qualified colo-rectal surgeon and ET nurse, you can find them via their professional organizations online.
 
Good Luck!  Let us know how we can help ... :-)

teddyb
New Member


Date Joined Sep 2006
Total Posts : 8
   Posted 9/19/2006 10:55 AM (GMT -6)   
Hi everyone. I have been reading this site for about 3 months and finally decided to join. I have colonic inertia and I am scheduled for a hand-assisted laparoscopy total colectomy on October 24. I am very nervous and excited at the same time. I have dealt with this condition for over 15 years. I am only 28 years old so basically my whole teen and adult life. I am ready for the relief but scared to death of the surgery. Does anyone know the average length of the hospital stay?
Thanks in advance for your reponses. :)

wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 9/19/2006 3:45 PM (GMT -6)   

Welcome, Teddy!

My APR surgery, due to anal/rectal cancer, was 6 months ago - long incision.  I was only in the hospital for 4 days, which is apparently unusually short for most people.  I've had no major problems.  My only restriction at this point is lifting, not supposed to lift/carry more than 40 pounds. 

Keep posting ... there's a wealth of experience here.  :-)


teddyb
New Member


Date Joined Sep 2006
Total Posts : 8
   Posted 9/20/2006 11:37 AM (GMT -6)   
Thanks for the welcome and post. My surgeon tells me that 5 is the norm, so that is what I am preparing for. I got my instructions yesterday and go for registration Oct 13. I am getting anxious for the results but nervous for the procedure.

resa
Regular Member


Date Joined Apr 2006
Total Posts : 141
   Posted 9/21/2006 11:43 AM (GMT -6)   
Hi Everyone,

Welcome to Holly and Teddyb.

Well, my appointment for today was cancelled. The nurse who does the diagnostic exams called in sick because her son was ill. I know situations like this can't be helped but I was so irritated. Just another set back. Anyway, the nurse has set a special day aside for all cancelled appointments. It is now scheduled for October 13, at 1:30 p.m. This now means I need to go with my son to his college and wait for his class to be completed so we can leave from there. I just do not do San Francisco. If someone else drives, okay, but not me. I now need to call my surgeon and reschedule my appointment with him. I am just so nerveous. By the time I get the surgery, if my surgeon still will perform it, I will be close to 56 years old. I have high anxiety about my age and this surgery.

Anyway, as always, I hope everyone is healing fine.

wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 9/23/2006 8:44 AM (GMT -6)   
Resa,  Don't worry about age being a factor if you are fairly healthy.  I was 63 when I got my permanent colostomy, had diabetes and sleep apena - and no probs whatsoever with the surgery or with healing afterwards.  Sorry your appointment was canceled and the schedule delayed.  Bummer!  :-)

resa
Regular Member


Date Joined Apr 2006
Total Posts : 141
   Posted 9/24/2006 1:06 PM (GMT -6)   
Thanks WMNAK for words of encouragement. I appreciate it. I have received good feedback from two people on this site who are my age and older. If you and she came out okay - then I will think positive and hope that I will also. I am in good health, except for this problem and a bad back. Again, thank you.

wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 9/24/2006 10:13 PM (GMT -6)   

Resa - be sure and let your surgeon know about your back problems, especially if yours are low back.  Tell him to be especially careful of how they position you and to be ready to help with any extra back pain after surgery.  God only knows how they have to bend or place the body, but being still, in perhaps an awkward position, for however many hours it takes (about 4 for me) may well leave you sore.  Just be prepared. 

I don't have serious back probs, but husband does... so I can appreciate your situation.  I was a little stiff but a good massage took care of it.  I'm sure you'll do ok ... let us hear  :-)


Holly73
New Member


Date Joined Sep 2006
Total Posts : 12
   Posted 10/1/2006 2:40 AM (GMT -6)   
Hi all, can anyone let me know what kind of surgery they had, cause i have been looking and have read that you can get a total colectomy by key hole surgery, and my doc is cutting me open from the top of the belly down to the bottom of my belly,i was thinking this was the only way, so if anyone had keyhole could they let me know plz. And on average if there is an average could you let me know how much weight (if any) most people lose?, And how much time do most ppl have off work and are unable to do most things? Thank heaps guys hope to talk soon Holly.............

Post Edited (Holly73) : 10/1/2006 2:55:43 AM (GMT-6)


resa
Regular Member


Date Joined Apr 2006
Total Posts : 141
   Posted 10/1/2006 8:41 PM (GMT -6)   
Hi,

Thank you WMNAK for the info on how they position you. I will let my surgeon know about my lower back. My problem is in the tailbone area (buttocks and left leg due to siatica).

Holly, I have not had surgery yet, but perhaps your surgeon is not skilled in laparoscopic surgery. My surgeon will try laparoscopic first and if problems arise he will cut me from my belly botton to my pubic area. Have you discussed laparoscopic surgery with your surgeon?

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 10/2/2006 4:15 PM (GMT -6)   

Hi Holly,

I had laproscopic surgery but I perforated and later they had to open me up big time.  I think there might be something to the idea of a better field of vision.  I suffered terribly, I can't help but think that if they had of opened me up to begin with, they might have caught the perforation sooner.  But who knows.  Hide sight is, as they say, 20/20.

Hope this helps.  Is your doctor a colon/rectal surgeon?

Cathy


Sasaki
New Member


Date Joined Oct 2006
Total Posts : 1
   Posted 10/2/2006 8:56 PM (GMT -6)   
Hello Holly73:

I just happened to pull up this site and your questions/comments while I googled. I have obviously just registered and interested by your situation. I am a colorectal surgeon in Louisiana, United States, board certified, fellowship trained at the University of Texas. I perform and teach LAPAROSCOPIC COLECTOMIES. I would be happy to explain any specific questions that you might have regarding total colectomy. I would definitely recommend performing your surgery LAPAROSCOPICALLY. However, in order to give you the appropriate advise, I would need to know your medical issues, specifically, your colorectal disease/condition. Do you have ulcerative colitis? Crohn's ? Polyposis? >>Dr. Sasaki

TGandJsMom
Regular Member


Date Joined Sep 2006
Total Posts : 41
   Posted 10/2/2006 10:28 PM (GMT -6)   

Hey all!

22 days later and I just got discharged this morning...

WHEW!

The surgery went well, but I got a secondary infection in my central line and had some other issues that put me in for a while longer, and then a small bowel obstruction that had to be gone in after to correct, but I would day the worst of it all was coming off 20 days of Delatin and Morphine.  I now understand why junkies never get totally clean, it hurts too bad...

Glad I am done withe the hosp ibt, but struggling with food.  Does anyone have any wonder food that got them through the first bit with little tummy upset??


Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 10/3/2006 5:37 AM (GMT -6)   

Hi Dr Sasaki,

I had a total colectemy-laparascopically for colon inertia in June.  I have BM's 15-20X/24hrs.  Surgeon advised metamucil capsules..I take 2 in AM and 2 in PM and have reduced the number to 10-15X.

Do you have any re3commendations to reduce frequency.

Laparascopic is the way to go if possible.

Thanks for any help

Phyllis


Holly73
New Member


Date Joined Sep 2006
Total Posts : 12
   Posted 10/3/2006 7:00 AM (GMT -6)   
Hi all, thanks for the feedback you guys are all great,
   Resa, that would make sense with the keyhole surgery if he isn't experienced as he didn't mention it to me at all, so i asume he just doen,t do it at all but i will be going to make another appointment to find out.
  Cathy, thankyou that does help, and i am going to a Colorectal surgeon.
    Hi Dr Sasaki and welcome, i am new here as well and this site is so helpful and the people here are great, anyway thankyou as well for your interest to help, my surgeon is Prof King at Sydney colorectal Associates in Australia, he diagnosed me with slow transit constipation(no nerves around the outside of my large intestine) have been on medication for over 16 months with no improvement, so he said my last option was a total colectomy when i have had enough of the pain so thats where i am now, getting operated in late Nov, as i had booked holidays and want to enjoy them before surgery.
    Vandgsmom, goodluck and best wishes with your healing, i will be very interested in how you go.
                              
 
 
                         Holly...................

Post Edited (Holly73) : 10/3/2006 7:04:27 AM (GMT-6)


tricia1461
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/3/2006 1:56 PM (GMT -6)   
Hi
I am new here and trying to get as much info as I can. I have had chronic problems for many years which was made worse by my laxative use/abuse-kind of a catch 22. Anyway, they have me using mega doses of laxatives now to keep things moving through me but it is not working real well. My dr has okayed a total colectomy which I am very nervous but also anxious for. I am soooo tired of all the pain and bloating and nausea. I did ask about having mine done laproscopically and was told that he had too much to work with to effectively perform the surgery with little incisions and that I would have an incision from my pubic bone up to my naval? Anyway-he is a colon rectal surgeon so didn't question anything. My questions are many-what types of foods are restricted after the surgery; is their weight loss; what other things do I need to worry about? Sorry for all the questions but I am trying to find out as much info as I can. My appt was cancelled for this afternoon (the one to setup the surgery) due to an emergency surgery so will have to call in tomorrow. They have mentioned that I can try biofeedback for 3-4 weeks and then go ahead with the surgery but my pelvic floor test did not show a definite problem so am just tired of all the extra tests and this pain! Nothing seems to help. I'd appreciate any info thanks. Oh, he did tell me to expect anywhere from 7-14 days in the hospital barring no major complications. Have a good day and thanks again!
Tricia

jeffchem
New Member


Date Joined Oct 2006
Total Posts : 7
   Posted 10/3/2006 1:56 PM (GMT -6)   
I had a total colectomy one year ago. I am glad that I had it. I had the J-Pouch construction (new rectum). While the new rectum healed I had a loop ileostomy for 8 months. It was a nightmare but it helped me heal so I am gladd that I had it. I had the sugery for Ulcerative Colitis. I was in sugery for 6 hrs. I was in ICU for 4 days after. My doctor told me in advance that I would be in ICU. I was in the hospital for 10 days total. In ICU my heart rate jumped to 180 and my blood pressure dropped to 90/40. I had an emergency CT scan to determine if I was bleeding internally but I was not. They gave me 3 units of blood and I was better.
I went home for about 7 days and was re-admitted. I had a fever of 103 and was dehydrated. I could not eat. I was in the hospital for 17 days. They never figured out what caused the fever but they found the righ antibiotics.
I lost 50 lbs in about 4 weeks . My food would go through me so fast that I had to eat about 6000 calories a day just to maintain my weight.
I had problems with the ileostomy leaking and would go see the ostomy nurses at my hospital. They are angels.
I had the ileostomy removed in march.

I am fine now except that I wake at night needing to go the toilet. I try to eat dinner at about 6pm and not eat after. That helps but does not stop it. I think it is more of a gas problem than an actuall need to pass my stool.
No more cramping and pain. No more bleeding.

gogently
Regular Member


Date Joined Oct 2006
Total Posts : 80
   Posted 10/5/2006 1:36 AM (GMT -6)   
Hi everyone,
 
I'm new to this site and was thrilled to have found it. I just recently found out why I have so much abdominal pain (especially left-sided) and bloatedness. The colorectal surgeon says I have colonic inertia. I did the transit test and it came back 21/24. I will find out the results of my defecography tomorrow (this is the second time I have done this humiliating x-ray!) I am so terrified because I've had abdominal surgery before. 
 
The same surgeon had done total pelvic mesh repair on me 5 years ago and I have had left sided pain ever since and my bowels have gotten slower and slower. I also have fibromyalgia and IBS-C and was wondering if anyone else had these issues to deal with prior to surgery. Were you in alot of pain post surgery? Did the fibro continue or was there relief? I'm in so much pain right now I could scream. I had to quit the meds (vicodin and zanax for the fibro) to make sure they are not causing the problem. So when I see the doc tomorrow, hopefully I'll be able to maintain my calm disposure skull  
 
I'll post tomorrow after my doc's visit.
Just want to,
gogently

A good laugh and a long sleep are the best cures in the doctor's book.  ~Irish Proverb~


gogently
Regular Member


Date Joined Oct 2006
Total Posts : 80
   Posted 10/5/2006 2:50 AM (GMT -6)   

Hi everyone,

I've read almost every post on thread 11 to glean information. You guys are great! It has been real encouraging to hear the success stories and also the ones where things have not gone well but continue to get better. It sounds like everyone pretty much has no regrets in doing the sub or total colectomy.

I had my visit with my colorectal doc today and he said my defecography tests came back okay. The surgery that he had done 5 years ago for pelvic floor repair was still successful. He has watched over me the last 5 years and says that because of my bowel motility becoming slower and now pretty much non-existent, I will need to have this done. He had warned me 3 years ago already but me being the big chicken that I am, not that I was thrilled with the prospect of another abdominal surgery, sad  had thought I could beat this thing. And I did...right into the ground. I now have extreme pain on my left side which is where most of my congestion is. It looks like a lop-sided pregnancy when I'm bloated! Chronic pain and unless I'm taking mega Dulcolax, nothing is moving. Nothing works anymore...suppositories, herbal supps, or Miralax, and forget about fiber. Fiber supps have been the worst because they block me up and I bloat big time which in turn puts more pressure on my left side. Has anyone else out there had that constant trembling feeling going on throughout your whole body and the chills along with your abdominal pain?

I just wanted to thank everyone out there for their feedback. You don't have any idea what a blessing you all are to me and others like me who are having to deal with this alone. I'm still really scared but I know I will overcome this too. My surgery date is set for Nov 27th and I have an appointment with the gastroenterologist Oct. 26 just to confirm that my upper GI is in order. My doc was concerned, because I still had markers in my SI, that I might have colonic inertia going on there also. I also have a mass in my bladder/vaginal area that my doc is not sure of...he thinks its mesh and scar tissue from my previous surgery. So I will jump through all the hoops, one more time. I have seen multitudes of doctors between this and the fibromyalgia so I've had my fill of docs and tests. Does the ab pain get better after the surgery? I think that is my worst fear...that I will add more pain to my already existing pain. My doc said he could not make any guarantees that the fibro would be any better but that the abdominal pain would be gone. And that is okay by me because that is where all the pain started in the first place...in my bowels.

As you can tell by this post, I don't sleep well either and migraines seem to go hand and hand with my constipation bouts. I read one post about being constipated for 9+days and then everything going liquid. Oh my gosh, I thought only I did that! That is the worst thing because you never know when the bomb is going to drop. And once it does, its like the dam broke. I have cleaned up one too many of these messes...some of them pretty embarrassing. And my husband refers to the smell as somebody taking the lid off the septic tank. I try to warn him and say run for your life and whatever you do 'don't light any matches!' We try to keep our humor in all of this. When I haven't gone for weeks, my husband swears I have a black hole that I'm keeping it all in!

I would love to hear from all of you, gogently

 


A good laugh and a long sleep are the best cures in the doctor's book.  ~Irish Proverb~

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