Just want to give people considering K-pouch surgery an account of my recent surgery. I had a J-pouch for several years and had lots of problems. Switched to an ileostomy 5 years ago, and was OK with it until I started having problems with the disconnected J-pouch. Since I needed surgery to remove it, I decided to try a K-pouch. My surgery was at the Cleveland Clinic on Oct 9, by Dr. Dietz. Here are my observations, so far:

1 - 5 days post op:

Tremendous amount of pain. I have concluded that the Cleveland Clinic simply doesn't do pain management well. After my previous surgeries, in New Orleans, when I was in a great deal of pain, they would give me a big shot of Dilaudid, that would immediately knock out all of the pain, and quite frankly, put me on cloud 9. I'd fall asleep 30 minutes later. The Clinic does not operate this way. They give very small amounts of pain meds (dilaudid), and very small amounts administered via the PCA. The result is an hour or two of terrible pain until the meds finally caught up. I spoke with my surgeon and the anesthetists prior to the operation, because my experience with the Clinic has always been the same, but it didn't help. The nurses did everything they could, including showing up, bedside, exactly when I was due for another shot, but the dosages were simply too low.

CC also has a strange procedure for meds that you take on a daily basis. They did not give them to me unless I explicitly asked for them. This is just ridiculous. I gave them a list of meds, dosages and frequencies, prior to the surgery. I went without one of my meds for 5 days, post-op, before I was finally given it. Obviously, I had forgotten to ask for it, but I was on pain meds - of course I wasn't thinking 100% clearly!

6 - 7 days post op:

Pain got better. I really wanted to get out of the hospital, and one of the pre-reqs was that I be on oral pain meds. So I switched to Percodet and Oxycodone. Still needed some shots of Dilaudid, for breakthrough pain. Switched from clear liquid diet to GI soft on day 7.

day 8:

Went home, to my parent's house. (I don't live in Cleveland, but they do.)

9 - 17 days post op:

Recovering at my parent's house. Still on oral pain meds, every 4 hours. Can't stand up straight, or walk more than 100 yards. Getting a little better each day, though. Eating everything on a GI soft diet - no raw fruits or veges. Able to login to work and check email, but not much else, work-wise.

Day 18 - Flew home to CO. Used a wheelchair in the Cleveland airport. Was able to walk and ride on people movers in the Denver airport. All told, it was about 12 hours of travel, which was difficult, but not un-doable.

19 - 27 days post op:

Feeling better each day. Able to work in front of my computer, at home, for 2 hours/day at first, increasing to 4 hr/day, and finally 6 hrs/day. I would work about 2 hrs at a time and then take an hour break. Taking 10 mg Percocet every 4 to 6 hours until about day 22. Switched to 10 mg Vicodin every 4 to 6 hours.

Day 28 - 30

Flew back to Cleveland for a follow up appointment. 1.5 hr drive to the airport, followed by 3 flights was a bit much. Went to a bar, on Saturday, to watch Ohio State crush Penn State with some old friends. Actually drank a couple beers.

Day 31

Follow up appointment at CC. Dr's and nurses were very helpful. My K-pouch is still a bit small, so they told me to intubate every 2 hrs for a week, then 3 hrs for a week, etc. Dr. Dietz said I should be able to start weening off the vicodin in 2 - 3 weeks.

Days 32 - present

Intubating is not at all difficult, although every 2 hours at night is a hassle. I could wear a leg or gravity bag at night, but it's far more comfortable to sleep without one. For the first time in 5 years, I don't have anything attached to my side, other than a little gauze held on by tape - feels great! I'm actually in a bit more pain, these last few days. I'm guessing it is because my pouch is stretching and I am not using constant drainage. It isn't enough to make me worry or call the doc, though. I'm working 8 hrs/day at my computer, although I am taking 30 min breaks every 3 or 4 hrs. I am lucky, though, to work from home.

General thoughts:

The pain from surgery was far, far more than I expected, but I think this is the fault of the CC. I was very happy with my surgeon and nurses. I'm getting stronger everyday and anticipate being on the mountain skiing, by mid to late December. I lost 10 - 15 pounds and still don't have a big appetite - food just isn't very appealing right now. I love not having an external bag. I can't believe nobody mentioned a K-pouch in all those years. Although I still have some apprehension each time I go to the bathroom to intubate, I can tell it will become routine soon enough. Barring any complications, I think I'm going to like this much more than the J-pouch and the ileostomy.

Hope this helps.

Steve

Congratulations Steve!!!!! Welcome to the club...just slow down a bit and take it easy for a while..you just had major surgery...so don't rush it...give your body a chance to heal...the pouch will stretch and you will sleep through the night shortly but congrats for the decision...and for the new life...
Sharon

Best of luck on your recovery. I am also a newbie
and am really glad I joined this site. It gives me confidence that I am not alone. The "experts" are so helpful. Good luck, Judith