Proctocolectomy drainage

I am having a proctocolectomy operation in Jan of 2013. I have heard that the complete removal of my rectum will require "tubes for drainage" after the surgery. Has anyone experienced this, and how exactly it done? Thank you for any information about this.

I had a drainage tube in hospital for 5d. It came out in the front near the left hip bone near the bikini line. I had my proctocolectomy done laproscopically for the first part, though for removal of the rectum the docs have to open you up belly button to bikini line .

I had my proctocolectomy laproscopically, and I just have 4 little scars -- no belly to bikini line incision.

I had a JP drain in the front. It wasn't that big a deal. It looked like a little plastic hand grenade (or one of those plastic containers for lemon juice that's shaped like a lemon). It filled with fluid a bunch of times a day .... started out looking like hawaiian punch, but the end was more pink. If I had been more mobile then, could have dealt w/it myself, but the nurses would drain it and replace it.

When my surgeon took it out, it was weird because the tube was a lot longer than I realized. It didn't hurt much getting it out, just felt odd ... I soaked a couple of johnnies until a nurse covered the hole w/gauze and then tegaderm to keep it dry.

I think the drain I had was pretty routine, but not something to worry about specifically.

A big surgery like this is scary, really no way around it. Feel free to ask more questions.

Must be really hard to deal with an ileo as a surprise.... it's hard enough when it's planned. I can understand why you'd have a lot of anxiety if you had such a big surgery as an emergency.

As for the "phantom rectum," it is real. There are still nerve signals down there and they can get jammed up. For me it was mostly right after surgery, and mostly mild. The one night it was really bad was the first night I was home from the hospital, I had a terrible reaction to the oral pain meds, and I was up all night throwing up. I kept feeling like I needed to run to the bathroom and have stuff come out the other end, and if I could just do that, I'd be better. That was one awful night.... but now if I am nauseous for some reason, I sometimes get a little of the phantom rectum, but mostly it's not something I feel. I've heard others say they go sit on the toilet for a few minutes to get it to go away.

I had my ileo at the same time as my rectum removal, though, so I was getting used to both together.

But I'd say, again, it's weird, but not something that's huge for most people.

I had a bad reaction to dilaudid, but it seems very particular, different people have issues w/different meds. I was fine when I was on the IV meds. They told me to stay on top of the pain, and so I erred on the side of taking too much. After I got the dilaudid out of my system, I went w/just tylenol and was fine. For my second surgery (to fix a complication from the first), I had percocet afterward for a week, and I was fine w/that.

I don't think I was sent home too soon. I had been on prednisone for a long time, though, and it's hard to heal w/that in your system. I got an abscess a week out, and had to go back in the hospital -- my surgeon said this would have been an outpatient issue w/out the pred, but because I was on pred, she came in at 10:30 pm to drain it, as she didn't want me to wait until morning.

I did have home health nurses -- very helpful with the wound care, although less so w/the ostomy (until they finally sent an ostomy nurse).

The first 2 days after surgery I can't really remember much, I was pretty out. I had a epidural for 2 days and that sorted most of the pain. After that and because it wasn't placed properly, they switched me to pca and you click the button when you need it, for 2 days, needed it then as I had a lot of gas pain. Then they switched me to oral tramadol, which they give you every 6 hours, which was far to often IMO and left me really nauseous. They added anti-sickness pills, but only twice a day and at different times to the painkillers, which left everything so out of sync, I was feeling horrible. I was released on day 6 and at home I made sure I took the tramadol every day at the same time, once in the morning and once in the evening. Keeping a consistent schedule eliminated the nausea, so didn't need the anti sickness pills any more, and I was able to quickly reduce the tramadol dose and switch to paracetamol within 2 weeks. The bum scar was particularly painful an swollen the first few days at home and with my GP nurse we concocted up a method to stop my but cheeks rubbing together by sticking sanitary towels onto them and padding the area for sitting. The but pain quickly goes down within a few weeks. Reg phantom pain, I don't really have this. However, when I'm mid cycle, I get pain in my bum, which sometimes makes sitting painful, I guess one of my ovaries may have slipped further towards my rear now. I had everything checked out recently and all is fine and where it should be, so it could be that it only takes some time to settle.

After they removed my colon, I did not have a drain tube exactly. They left every other inch of my incision open to drain infection. My operation was an emergency and that's why they did that. Don't think you will have the same experience. I was literally dying before the surgery.

After the JPouch creation/hysterectomy, I did have a drain tube out of my bottom and the JP Drain in the front on the bottom left side. I had the drain in my bottom for several days. I barely noticed it (pain drugs maybe?). JP drain in the front was more and more tender as the time went on. I'm not sure when they removed it since I was in the hospital for 2 weeks and a day but it was in the second week.

I DID develop two different infections after surgery. My surgeon actually removed some staples in my incision and pull the skin apart to drain some of the infection around day 5.

My situation is NOT the norm!!!!! But I can tell you that the drain in my bottom was barely noticed. I just remember that sometimes when I sat up in the bed a certain way, I felt it there but was on pain meds and it wasn't a "problem". When I told the doctor that the Jp drain in the front was getting real tender (thinking I was getting infection #3), she smiled and said "yeah. the longer we keep them in you, the more irritated the opening gets from the stitch to hold it in place pulls". And they did keep mine in me days longer than usual. When they took it out, they told me to take a deep breath and slowly release it. It distracts you from what they are doing if you concentrating on your breath and also helps to keep your abs relaxed. Just like crossing your arms on your chest and putting your hands on the opposite shoulders helps you relax your abs. I didn't even feel them remove my jp drain other than a little tickle funny feeling.

Jen

When they had me walking, I had two of those hospital gowns on. One open to the front, one open to the back but only tied at the neck. They always had ties at about my waist level. I tied my drain tube with those waist level ties so it wouldn't droop and pull on that stitch and make my skin more tender at the opening. :)