Round 2 in J Pouch Surgery – What to Expect Next

Glad to hear you’re doing well and 2/3 of the way done. My surgery is 2 stage, so my first surgery included the removal of the colon and the creation of the J Pouch, which I guess makes it a bit more intense than either of your two so far, but I got it over with in one shot. My first surgery was about 9 hours long, and I was in the hospital for 5 days (left on the 6th day in the late morning). I’ve mentioned some of the issues I’ve had in the other thread, the two biggest being (1) a lot of problems with the wafer leaking because of the placement of my stoma right in the middle of my stomach, over my belly button); and (2) one of the incision wounds not healing and having the discharge make it hard to keep the wafer stuck on. Both of those are under much better control now. The wound finally healed, and and I’m finally really getting the hang of getting the wafer on so it doesn’t leak as much (knock on wood!).

I’m at 11 weeks post surgery. I’m getting around fine and it’s been weeks since I had any pain. I’m less active than you were after your first surgery, mostly because up until 2 weeks ago I’ve been terrified of poop leaking all over me if I went out somewhere. But I’m getting better. Today I went to my son’s pre-school for a belated Father’s Day ceremony.

I’m scheduled for my super fun X-ray next Friday, which will be 12 weeks and one day past surgery, then I have a follow up the following Wednesday with my surgeon for a scope. Fingers crossed that all is good, and they might schedule the second surgery by mid July. Really ready to get it done and move forward. I have a cruise scheduled for Labor Day (planned it before they told me I needed surgery), so I want to have as much time between the surgery and then as possible.

Are you just on regular Immodium? After a week or so of having really liquid stools my doctor added Lomotil. And I’m also on Cholynesterol powder. That keeps it pretty thick most of the time (although I typically have one or two much more liquid stools per day, I think it depends on what I’m eating to a certain degree).

My surgery was planned, not emergency. I had a colonoscopy in January that showed some cell dysplasia. I was diagnosed with UC 18 years ago and Remicade wasn’t really controlling the symptoms anymore. All that led to my doc strongly recommending surgery, so here we are.

Sounds like you’re moving along faster than me. Yes, it’s the enema X-ray this coming Friday, then I guess I do some kind of scope the following week with the doctor Hopefully it will all be good to go. Did they tell you how long to expect between rounds 2 and 3?

I’m cruising to Bermuda. It’s a 5-day cruise, with a day and a half spent in Bermuda. Should be great. Hopefully I’m up to having fun on the island. If not, just sitting on the ship with a drink will be nice too.

Just got a call that my reversal surgery is scheduled for August 9 (pending the X-ray and scope being all good). I was hoping for sooner, but that’s the earliest my surgeon has open in his schedule. They are putting a note that I want to go sooner in case there are any cancellations.

Had the enema X-ray on Friday. It was … unpleasant, but bearable. Had my follow-up with the doctor plus the scope today. Both the X-ray and the scope came back great. My surgery even got bumped up a bit to July 21. They told me to expect it to be a little more complex because of the location of my stoma (which I’ve talked/complained about before). He said the pain would be a little worse than normal, and that my hospital stay will be 3-5 days instead of the 2-3 they normally say for the reversal.

Glad to have all that stuff out of the way and glad there were no issues with either test. I’m ready to get this bag behind me and get onto the next chapter.

I hope you’re recovering well!

Not quite sure what you mean? Like you feel like something is coming, but it doesn’t?

I was OK during the contrast enema other than the very beginning and end. Once it was in, I was OK for the most part and the radiologist did his thing. Then I thought it was over, and he told the X-Ray tech to take 2 more pictures. There was a minute delay or so while she moved some stuff and got it set back up for the X-ray, and that was awful. Oh well. It’s over.

The scope was super easy. I don’t know what I was expecting, but I guess something more like a traditional colonoscopy. This was over in like 30 seconds.

Round 3 next Tuesday! Somebody cancelled and I’m coming in off the bench! One more week with the bag and that’s all she wrote.

Right! We will probably be in the hospital at the same time. I will try to remember to post right after and tell ya how I feel.

Thanks! In here hooked up waiting right now.

Hi everyone, stumbled onto this website and your thread. My daughter is 8, diagnosed with UC in Febuary of this year. No response to Lialda, methotrexate, remicade, dual therapy of methotrexate and Lialda and just barely responding to prednisone anymore at 40mg a day (max pediatric dose). She’s in tacrolimus which is keeping her at approx 4-5 BM a day, still diarrhea, still blood, still abdominal pain and cramping at night without relief. Our last hope is entyvio, which were being denied by insurance companies for due to her age. If not that, the next step is the ostomy, j pouch and eventually the “takedown”, I believe you called it. I’m dying on the inside for her and am interested in your progress during the last step. Please follow up if you are able and I’m sorry to hear your surgery was cancelled.

I will be praying for you and your daughter too.

Lew (and anyone else who is interested) I just wanted to give you an update of how I’m doing a little more than a week past my surgery. I came home a week ago today, actually (after having surgery the Thursday before).

Around Monday of last week I noticed that my BMs were no longer watery. They’re more like thick toothpaste (sorry for TMI). Throughout the day, I feel pretty good. I’m going maybe four times throughout the day (I haven’t really been counting). The past couple nights have been a little unpleasant, though. I’m finding myself going every hour or so. It’s that same thicker consistency. I’m not sure if it’s just that I’m eating too late into the evening (when I first got home I was making a point not eat after 7:30 and I’ve been less strict lately). It also could be that I’m just not sure/able to completely empty the pouch yet, so when I go it’s not getting the job done. Hopefully that will come?

I have had a few unpleasant BMs where I feel spasms in my guts, but those are rare. I also haven’t had much in the way of “butt burn,” probably because my BMs haven’t been liquid. There is some soreness and I’ve used Calmoseptine a few times, but nothing too bad. Again, excuse the TMI, but sometimes it feels like there’s something really big coming out and stinging on it’s way, but then it’s just the soft little stuff in the toilet.

I’m thinking this is all just part of the process. I know that people say there’s a trick to learning how to completely empty your pouch, and I’m not sure how long that takes. Since I’ve still got all the stitches in my gut and the hernia risk is still there, maybe that’s something that will come when I’ve healed more.

All in all, I think I’m doing pretty good. I take a pain pill before bed and first thing in the morning, and then I’m good for the day. I go back to the doctor in two weeks to get the stitches out and for a check up.