Drain free! :-)

Back to Cleveland today where my surgeon pulled the JP drain. I told him I was fretting about it (which I seem to do with everything now!) and he was clipping the stitches and got me talking about something and the next thing I knew he had the whole thing in his hand and it was over. I didn't even know he was doing it! He got a kick out of that. I'm supposed to call them right away if I pop a fever or start feeling bad.

I see him again on 12/5 for my regular 6 week post surgery follow up. Six weeks after that I will go back for my imaging to make sure the pouch is ready to go. Once that is done, I am free to schedule my take down surgery. Only two months!

I finally got a chance to tell him I hate this stoma! He told me he made the decision to try to make my pouch as good a size as he could and it put a little extra tension on the stoma and that is why it has rotated the way it has. It sounds like short term difficulty for the payoff of having a slightly better pouch long term. I did get upset because he wanted to see it. I was scheduled to see the stoma nurses anyway, so I was expecting them to do a change (still having skin issues). Well, he went to see another patient and then a but later the stoma nurse shows up. She removes the pouch and checks things out and decides what we are going to try for my skin. She gets everything ready, but we can't pouch up until the doc gets his look. And we waited, and waited, and waited. She was very good to me and kept using the gauze to clean away the output and stuff, but I got very upset as time passed. It eventually made me break down and cry. I just felt oddly vulnerable having to lay there all that time without a pouch and hoping I wouldn't poop all over everything. It ended up being just over half an hour!! I gave him he'll when he came in. I told him how long I had to wait like that and told him it would be like him standing on the street corner with no pants on and just hoping too many cars didn't drive by. He apologized which did make me feel a little better.

I'm now in a deep convexity Marlen pouch with an extra convexity ring behind it. The hope is that will push my skin down and away enough to get some relief. We will see how it works. They gave me two more and I still have various supplies on hand. At some point I will have to order from edge park, but right now I have no idea what is going to work so I wait.

Hi Pancakes,

tell me again exactly what your surgeon said about giving you an extra special kind of pouch? I think it is so important, because you're going to have that pouch for the rest of your life, and we know what a difference this can make. I am going to see my surgeon on the 30th, to talk about step 2 and step 3. I am sure he will do the best job that can be done, I think he is great. I just want to know what kinds of considerations go into forming the jpouch.

I don't mean to imply that it's a special kind of pouch, I imagine it's made like any other j-pouch. As I understand it, he elected to use just a little more of the available bowel to make the pouch a smidge bigger rather than putting that extra bowel toward my temporary stoma. It resulted in a lot of tension coming from the "down stream" bowel which rotated the stoma forward/downward so it's very small and the opening is very low and close to the skin. It's really not the greatest thing, but I appreciate at least knowing the logic behind why he did it that way.

I don't know about tough.....I did a lot of crying as the clock kept ticking and we kept going through gauze wiping the output away. There really was nowhere to go. I finally got pissed off and told the stoma nurse if he wasn't there in five minutes we would take a picture for him and put the darn pouch back on. It was frustrating for sure!

AAAAAh. Now I understand why my surgeon said he was going to give me a "small" loop iliostomy.