About to have proctocolectomy

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ttpelrine
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/14/2007 10:09 PM (GMT -6)   
Hi I am new to this site and I am preparing to have a proctocolectomy. I am a bit scared about what to expect immediately after surgery. Maybe some of you could help answer my questions. Do you have a central line or nasogastric tube in after the surgery? How long is the average stay in the hospital I have read about ten days but I am not sure. It could be different everywhere. I am from Canada. Is there a lot of pain right after surgery? Also if anyone can give me any info on what to expect in hospital after the surgery I would greatly appreciate it. I am waiting right now for my surgeon to call with my appointment to go in and discuss the surgery. I am sure he can answer my questions but I would like to know now as I am very curious.  I am also not sure if the ileostomy will be permenant or temporary they originally were thinking temporary but I am not sure after having my scope and finding out the rectum has to go too.  Anyone who can help alieviate my anxiety would be great. Thanks    confused confused sad sad

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 1/15/2007 8:42 AM (GMT -6)   
hey there. i just had the same surgery done at mcmaster hospital in hamilton, ontario two weeks ago. typical recovery is 5-7 days in hospital, although i ended up staying in for 12 days because my bowls took so long to "wake up." (during surgery all your organs go to sleep, then theyhave to wake up and start working, bowls are the last thing to start working) apparently it was quite unusual for the bowls to take so long to wake up.

i had a PICC line installed in my left arm, where you'll be given IV "food" and "water" because you won't be able to eat any real food until your bowls start to work. other IV meds will also go though this. for the surgery there are different methods for putting you to sleep, the anesthesiologist (sp?) will determine what is best for you. in my case they put an epidural into my back which seemed to work well-it came out right after i woke up.

as for the pain right when you wake up from surgery..well i'm not going to lie, it was horrible. i've never been so scared before in my life. you'll be in the ICU, i woke up shaking violently, which went on for about an hour while the anesthesiologist was slowly giving me narcotics to kill the pain. they can't give you a huge dose, they give a little at a time and eventuallly it'll get to a point where the pain will be gone. you'll also have a urine catheter installed.

when you get back to your room you'll have pain meds hooked up to your PICC line and a button to press everytime the pain comes back. when you press the button, narcotics will go through your PICC line and numb the pain. i couldn't get out of bed for two days. try to start walking as soon as possible, it'll help to wake up your organs too.

and since you're in canada you'll get $600/yr from the government if your ileostomy is permanent, most medical plans also cover some costs. (mine covers $1200/yr) when you leave hospital you'll have a homecare et nurse come to your house every couple days for as long as needed too, to clean your wounds, change your bag and teach you how to change the bag. pretty handy, i just had my first nurse visit yesturday and they come again tomorrow.

anyway i think i answered everything lol. any more questions, post up

--matt
Dec 2006: Proctolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


ttpelrine
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/15/2007 11:35 AM (GMT -6)   
Thank you very much matt for all the info you provided. It is very helpful and you did answer my questions. I do have a few more if you don't mind. Did you have an NG tube after the surgery and for how long? Also how long did you spend in the ICU?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/15/2007 1:23 PM (GMT -6)   

I had a total proctocolectomy with a j-pouch due to severe ulcerative colitis.  My experience was different.  I did not have a PICC line nor an NG tube.  Also, I did not stay in ICU.  My pain was controlled with a morphine pump.  You have some great questions that can be answered by your surgeon.  If you are getting a j-pouch I encourage you to visit www.j-pouch.org  There are over 5000 members on that site who can be there to support you through the surgery and the recovery.

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
 


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 1/16/2007 5:42 PM (GMT -6)   
ttpelrine-i spent about 4 hrs in the ICU after surgery. i DID get an NG tube installed a couple days after the surgery because i was feeling bloated, but having an NG tube installed isn't normal..they only install it if need be

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


ttpelrine
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/16/2007 10:12 PM (GMT -6)   
Thanks matt that is relieving. I have had an NG tube once before and it was horrible. That makes me feel a lot better to know it is not a normal procedure
Was Dx with ulcerative colitis in Aug 2005 and c-diff colitis. Then they told me they changed there mind they didn't know if it was UC. The ulcerative colitis has not been confirmed because biopsies are inconclusive but all the colonoscopies suggest UC. C-Diff is recurrent and no medications have responded. Have been on Salofalk, Asacol, Prednisone, Flagyl, Vancomycin, Fusidic Acid, Rifampin just to name a few. GI and Infectious disease has no more suggestions other than surgery. I have been suffering so long and they are now getting ready to book my surgery. I have been in and out of the hospitals for two years now and am looking forward to finally getting rid of this horrible nightmare. Jan 15th 2006


whistlbone
Regular Member


Date Joined Jul 2006
Total Posts : 23
   Posted 2/21/2007 5:25 AM (GMT -6)   
Hi,

i just had my proctocolectomy just 4 months ago! I feel great! im alive and i cant believe that i can have a life now without pain! look what you have to look forward too!

What to expect.... everyone is different. I was only in hospital one week. There was a little bit of pain when i woke up, more so thirsty. when i finally felt able enough to get out of bed (maybe two days) i felt like i was stitched folded. I couldnt really stand up straight. It hurt alittle trying to stretch, but its the best thing to do! Walk as much as you can, but dont over do it! small steps.

I have adjusted really well with my new illiostomy too. I love that i have this cool party trick (no butt)! hehehe My bag, is apart of me. im still me, but extra. Im still loved and you will be too!

I personally stopped all pain killers two days after my surgery, but that is because i dont like drugs.

Good luck with everything.

Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 2/22/2007 1:52 PM (GMT -6)   

Hi, my total proctocolectomy for severe UC was over a year ago.  I had a PICC Line put in for nutrition. (keep an eye on the arm because mine failed at 3 days after the surgery and my upper arm swelled up) The nurses never checked it and I found it myself)  My nasogastric tube was inserted after they put me to sleep, so I don't know why you can't request that if you have to have one.(I would suggest you do have one cause if your tummy gets full of gunk, and I do mean gunk, it will really make you vomit, which you don't want to do when your belly is stapled shut)  My naso gastric tube also failed me a couple days after surgery.  It got pushed sideways in the back of my throat and was very uncomfortable, and I called the nurse in to look at it, and she said she would have to push it back in, and I wasn't having it, so I pulled it out.  It was ok for me because my bowels were starting to wake up. As far as pain, I didn't get a pain pump, but it depends on your tolerance for pain.  It wasn't as bad as labor pains, and they kept me comfortable.  I made sure to move my legs as much as possible in the bed, before I could get up and walk, because I didn't want a clot.  I was glad I had earplugs (noisey hospital), and a firm small pillow to hold on my belly if I needed to move or cough.  They made me breath into a little plastic thing to make sure I didn't get fluid in my lungs.  The worse part for me is that I was promised a home health nurse and she never came and I had a bad leak when I got home.  I am 55 and was only in the hospital 3 days before the operation and 5 days after.  The hospital was suppose to get a nurse to come, and they wouldn't come because they couldn't find any who would take my health insurance.  Pretty pitiful.  I have an ET's office by me and I went to see her after my leak.  She didn't charge me anything, because she is an angel of mercy for all of us here.  I did have to go into a convex flange, or barrier.  That helped alot.  If they take your rectum and anus, you will need to be careful not to stretch that area by sliding in and out of bed, etc.  Don't sit on a donut.  Only sit on a flat cushion, made of a 2 inch flat piece of foam.  A donut will spread out the cut area.  I was sent home with pain pills, but only took them as needed, and not all the time. 

Hopeso 


 


singsasong2
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/23/2007 4:43 PM (GMT -6)   
Hi, I am new to the forum, but definitely not new to having an ileostomy. I had a total proctocolectomy 12 years ago (age 28) with the diagnosis of UC, but was later told it was crohn's. I was in the hospital for 5 days before my surgery because my bowel was distended, I was in severe pain, I was bleeding severly and was told going into the hosptital that I would loose my bowel. After several days of cyclosporine, antibiotics, high dose steriods, they told me that I had no choice. If I didn't have the surgery I would die. Before I had surgery, I had a central line put in. I was in surgery for 4 hours and had an NG tube in when I work up in SICU. I was also hooked up to a pain pump through an epidural in my back. I remained in SICU for 2 days, then moved to the floor. I was discharged after 8 days. I had the unfortuate complication of having an open wound. I was also told that my bowel was so diseased that it feel apart when the surgeon took it out. That was the beginning of my new life. I had suffered with IBD since I was 12 years old. I never could go anywhere without knowing where a bathroom was, and was in constant pain. I was really scared knowing that I would have to wear a "bag", but I regret that I didn't do it sooner. I have had quite a few surgeries since my main surgery for peristomal hernias, which resulted in my stoma being moved twice. Plus many other hernias, ileus, bowel obstruction and severe infections requiring IV antibiotics. I have also had bladder & kidney problems. But that is not the norm so don't get frightened. I think that this is a wonderful forum for new ostomates. I am sorry that I haven't discovered this until now. Hopefully, you have an ET nurse at the hospital where you will be having surgery that can help you with the emotional aspects of a new ostomy, as well as the care afterward. They are a wonderful resource. Good luck with your surgery.

singsasong2

mrz.B
New Member


Date Joined Feb 2007
Total Posts : 5
   Posted 2/25/2007 6:09 PM (GMT -6)   
hi singasong2
I to am new to the forum, but not new to this life. I had my surgery in 1988. I was 19. My crohn's was also extremely severe. my former doctor did everything but test me for bowel disease. idiot! he told my mom she was not feeding me enough of the right kinds of food. that i ate too much junk food. I had severe pain since I was in grade three. my poor mother thought it was her fault. when i was 19 I had 11 fistulas,( at the same time ) three absesses, hemorrids, fisures, leaking pus,blood, undigested fat plus going to the bathroom 15 to 20 time a day. the fistulas connected to my womb and to the outside of my rectum. the infections were horrible. I was also anemic and to this day still have terrible leg and knee pain. as you know when you are like this you cannot go to school or work or go out. I used to carry a change of clothes and a role of paper with me. I knew where every bathroom was or really big tree. hehe. this wasnot always safe being a girl. since my surgery i am pain free, and disease free. I had a procolectomy. my rectum was destroyed there was no going back. at the time i thought my life was over but in reality it was just the beginning. I went back to school became a practical nurse, changed over to then become a educational assisant.(summers off) I have two beautiful boys 8 and 11. I delievered both naturally. not bad for someone who was told that she might never have children. the boy who i was dating stayed with me and is one hell of a guy! It's too bad so many people suffer so much with bowel disease. my quality of life before and after surgery is like to different planets you just can't compare.

Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/3/2007 8:04 PM (GMT -6)   
I am facing surgery after years of suffering with UC. I am 54,and pretty scared. My GI says I am at the end of the road for being treated medically and I will see a surgeon in April. It helped to read these posts. Thanks for sharing your surgical experiences.
  1.  


Nancy1
Regular Member


Date Joined Nov 2006
Total Posts : 125
   Posted 3/5/2007 8:26 AM (GMT -6)   
My husband is facing surgery after 33 yrs of UC.  He was wondering what to expect.  It is better to be prepared than go into surgery not knowing what might happen.  Any advise as to what to have at home when you return from surgery?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/5/2007 8:43 AM (GMT -6)   
Nancy,

It is far better to go into surgery knowing the procedure and the steps of recovery than not. I have seen that those who did not do their homework (speaking of the j-pouch surgery) and went into surgery with no knowledge, had a more difficult recovery and were less patient with the process. It would be very beneficial for both you and your husband to read up on the surgery he is selecting and talk with people who have had it.

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
 


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/6/2007 1:44 AM (GMT -6)   
If you are a woman you should be aware of changes in female anatomy after rectum removal. There's a great discussion on the United Ostomy Association's message board. go to the following website: http://www.uoaa.org/forum/index.php

then click the search button and use the the following search terms: changes in female anatomy after rectum removal

I have had an ostomy for 2 years now and I am going to have my rectum removed at the end of the year and I found this information really helpful.

Erica

marymagdalen
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/22/2009 7:37 AM (GMT -6)   
Hi, I am having a Proctocolectomy in 9 days. I am going to have a J pouch. I am very nervous. I would like to hear from anyone who had this surgery because of colonic inertia. I am told that when they do a J pouch for people who are having it for chronic constipation, the J pouch doesn't work as well. The reason is because our pelvic floors are so weak. If anyone has had this surgery for this reason, and they have a J pouch, please tell me how you are doing. Thanks!
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