Hi, please please please tell me more, I'm having the same surgery on the 15th of october, was meant to have it yesterday, 1st of October, but hospital had no beds. So, please tell me everything, even the gross painful stuff!
Hi - I've already been communicating separately with Kazann - but, from your reply, I notice that you would like some information on the total colectomy surgery.
Well almost five years ago I underwent this operation for torrential diverticular bleeding and described my experience to another Medhelp patient on:-
Have a look at this posting and do come back if you have any questions
Hi. First let me say good luck with your upcoming surgery. Are you having the exact same surgery? Do you mind me asking why?
Well I had 2 fun filled days of prep, just to make sure I was clean because in the past those lovely gallon drinks of junk did not work. So I spent the first day at home and the 2nd in the hospital on more special drinks etc... to help make sure I was a clean as could be. The was just the beginning of the fun. I want to first say that everyones surgery is different. Everyone deals with pain differently too - just remember because something happened to me does not mean it will happen to you.
My surgery lasted over 5 hours long. They had a problem getting my colon detached from my pelvic area. I'm not 100% sure why at this point but it went well anyway. Just took a bit longer. Then I went into recovery and was sent to me room later that day. I don't remember much but at this point the nurse upped my morphine drip becasue of the pain I was in and it obviously was too much for my body to handle at that time because I ended up having a breathing emergency (which scared the poop out of me). I quess it supposedly is normal due to the morphine and the meds they give you in surgery. Sometimes your body just reacts and can't take it all in. What is scary about it - is you are so drugged you come in and out of it and there is all this excitement going on around you and you don't understand it. Like 9 or more people all dressed in dark blue outfits (i think they were all from respitory department) were suddenly hovering all around me. I remember this one nurse kept telling me I'll be fine..."we just dont' want you to bottom out" or you'll be fine..."we just dont want to lose you"...Aaaahhhhh! Talk about freaking you out. If i'm gonnna be "FINE", stop saying these other things. The only other things I remember about this was asking for them to please call my husband and get him back to the hospital and them telling me they were going to give me a shot that was going to counterreact what was happening and it would give me a huge migraine. I thought i begged them not to cause i hate headaches but I dont' really know if I did or not. Then I woke up in ICU and had no knowledge of getting there. They put me there just so they could monitor me better and had me on all the machines, to make sure my breathing was ok. I hate those things ... the minute you breathing goes slower the thing beeps, the minute your oxygen level goes down...the thing beeps...aaaahhhhh! I know it was there to help me but it drove me nuts. I was there for 2 days. Again remember it does not mean this will happen but if it did, i have been told it does happen to lots of folks just because of the meds. I'll pray it won't happen to you.
Getting back to surgery... while in ICU the nurses would keep asking me if I had begun passing any gas (i'm sure they will do this with you to). They keep after you to make sure that your bowels are waking up after the surgery. Finally at one point later in that second day ... I finally passed gas and when the nurse came in I told her and I also said that I wasn't sure but it felt a bit wet too. Sorry for the "gross" stuff. So they (2 nurses) decided that maybe I should use the potty in the room (a toilet that pulled out from under a sink...how weird). When I moved they said oh yeah just a little wet. The embarrassment begins. And it gets much better from here. So I go to get up from the bed to use the toilet and a Waterfall happens and I have no control what so ever. #2 flowed down both legs, hit the floor like a storm came through and I just stood there so frozen by this unbelievable "OMG I can't believe that just happen" feeling. I also remember feeling "like great, this is what I have to look forward to". I was a bit depressed about it. The nurses on the other hand didn't seem phased. So... you may or may not have "accidents" in the hospital and at home the first month or so. I'm out 4 weeks now and I occasionally still leak a little bit if the stools are too soft. At first I had nothing but very loose stools and they have begun to thicken up now that i'm eating more of a regular diet. For me... I seem to go back and forth and it makes it feel like I can't leave the house much. I've only left to go to the ER and to the doctors for follow ups. It seems that every one has a problem with the stools thing. All I can say is just be patient with it, take it day by day. Take it all day by day and remember you will have just gone through a major operation and you need to cut yourself some slack and realize it will take some time to heal.
So the rest of my hospital stay was pretty uneventful. You go to the bathroom a lot. They make you get up and walk, which at first you think "you're crazy, I can't do that" but you do and you do a little more each time. Just do your best. I was offered solid food on the 4th day and I looked like I saw a ghost when the dr told me I could have anything I felt like eating for supper. I couldn't believe that I was allowed to eat yet. I did pretty good and the next morning had breakfast and my biggest problem even before eating was dealing with feeling nauseous (sp?) (i misspell that word every time). The good thing about being in the hospital if you still have your IV is that they can give you good stuff for that.On the 5th day I had to have my IV removed and did not allow them to put another one in because they couldn't stick me. My veins werre not cooperating Funny story about that... they had to remove two of my IVs because they were no longer working and needed to give me another one so at like 4 a.m. the nurse came in with a "VEIN FINDER" sorta like a stud finder. She shut the lights off and began searching with this thing for veins that she might be able to use. I was absolutley horrified. Here i am thinking this woman is going to stick me in that dark when they can't do with all the lights on. Turns out they just use the machine to find the area and turn the lights back on to stick you....aaaawwww Thank God. She still couldn't do it. I huge nightmare for me. She ended up sticking me with the smallest needle possible and then within a few hours it wouldn't work and they had to take out...at which point I said "NO MORE IVs". So later that day there was not much more any one at the hospital could do for me that I couldn't do at home, so I went home. I was sorta happy but very scared to leave the place where the nurses and doctors where.
Recovery has been rough. For me i've had a ton of what I believe is muscle pain. It feels like I'm so bruised from the inside out and someone is pressing on it. The soreness/acheness is really very hard to explain. I'm sure you'll see what I mean. Please let me know how you feel after your surgery. The first few weeks are very tough to move around. I find that once I'm sitting up in a straight position even though I feel fine while there I hurt like hell when I'm ready to lay down again. Taking a shower is still tough for me right now. I think it is just because you ache so much, you lose muscle mass and it is a catch 22 kinda thing. You need to be moving more and more but it hurts to move.
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The only other thing I can think to tell you about my recovery time is that my first full week after being discharged from the hospital was a nightmare for me. I hate feeling nauseous/throw up feeling. There is not a whole lot more that makes me want to cry than the feeling of throwing up. Well I was like that all week and never did anything until that Friday. I feel for you ahead of time if this happens to you. I for some reason couldn't get it under control and felt so lousy. On Sunday early a.m. like 2 ish I went to the ER to get some relief. I knew from previous experience they have this drink they can give you that will numb everything from your mouth to your intestines. Gives lots of relief. They gave me something for the nausea through an IV and gave me fluids for a little bit of dehydration. Within a few hours I was good to go and went home and tried to sleep it off. That day ended up for the most part being the worst of that round.
My next battle was fighting the blues. I had several "break downs". Some of which I know where just because I was so uncomfortable and miserable that I could do nothing but just let it out. Other times I had no idea why i was crying but do know that after any surgery (especially something this big) it is normal to have post of blues. This has come and gone. You kinda don't know when it will hit next. Just remember take it one day at a time.
The next big battle was sleeping. I couldn't get comfortable so I couldn't sleep. I ended up having to get sleeping pills for a few weeks just to get some rest. You need to sleep to help your body heal and if you're not sleeping you're going to get depressed. Make sure you let you doctor know if you need help sleeping
So here I am on week 4 and I'm doing better. I take it one day at a time like I said. The bathroom trips some days are really bad and other days I can handle it well. (one more thing about the bathroom trips... before your surgery go out and buy yourself some nice "butt paste", something that will put a protective barrier between you and the acidness of the stools and something that will help with all the wiping you will be doing)All I can say is "my butt has never seen so much action and boy does it hurt sometimes. Once the movements slow down, it will get better but being prepared will only help you. Ask your Dr what will work best. I know some people say use baby wipes to help with clean up too. Your Dr should know what will hopefully work for you. The important thing is to make sure you have a good solid barrier at all times proctecting your skin. I told my doctor if I knew someone who was having this surgery I would put together a "butt basket", you know instead of a gift basket, for them. He laughed but I'm serious. No one seems to warn you about this issue.
I'm still having good days and bad days but at this point the good are out numbering the bad. A sign to recovery. I hope I didn't scare you. I just wanted to tell you my story becasue I know I tried to find people to do the same for me before I went in for my surgery and had no luck. I still feel like I'm out in left field because I don't feel like I have anyone to talk to about things except for my doctor and although I know he knows what he is talking about..its not the same as talking to another patient. I wish you the best of luck, please keep my updated as to how you make out. If you have any other questions just ask. If you feel more comfortable talking more one on one, more private setting... I can give you my email. Just let me know. If I don't talk to you again before your surgery ...good luck. I'll keep you in my thoughts. Just curious ... where are you from? etc... tell me a little about yourself and why you are having the surgery. I live in NH and had the surgery after 20 plus years of suffering with giardia, IBS, colonic inertia (which is a slow moving colon) and in the end it was moving so slow it was barely working. Nerve damage took place or something. So that's my story, again I hope I didn't say anything to scare you. It is the best thing I could have done and I know I'll be better off for it. I'm sure you will be too. Take care. ~Karen
Well I was able to do it in 2 post.... So good luck with everything. ~Karen
Hi, I have had 2 colon resections, recovering from the 2nd and adhesions on the small bowel, I was encouraged about this surgery. Its different than the J pouch, do they do it everywhere or only where you are from. I am almost there because I only have a little of my colon and it just is dead. I wish I had what you had done. Its so tough I have been at this for about 7 years now. I don't know how much more I can take.
Thanks for the info.