About to have proctocolectomy

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

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

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

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 

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.

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?

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