On Saturday I got a visit from one of the stoma nurses. She switched me out from the surgery bag (which I jokingly call an oven bag because they look an awful lot like those bags you bake a turkey in!) to their regular post-op bag. When you get a loop ileostomy, there is a rod underneath the loop of intestine which helps keep it in place so the base around the stoma can heal, etc. It can be challenging to put a bag on with this rod in place. I didn't have any trouble after my first surgery, but I sure did with this one! Within a few hours, I noticed it was leaking badly when I got up to go to the bathroom. I was very upset because output was getting all over my incision, including the open wound where they had removed the drain from my abdomen. (side note: removal of that drain was one of the things I was most afraid of coming out of surgery. Turns out, it wasn't that bad. The feeling is sort if intense and it feels like they are pulling something out from way, way inside your body, but it wasn't overly painful.). My nurse was very reassuring and she cleaned the wound and incision and got another pouch on me. Less than two hours later, I tried to sit up to go to the bathroom and half the wafer just fell off my stomach. More output everywhere, including pouring into my wounds. I completely lost my cool and just started crying. They couldn't get a better seal because of the rod, but the rod couldn't come out until Sunday. It was this horrible catch 22.
I still had the same nurse and she was so good to me through all of this. We came up with a plan and she put the new pouch on with an insane amount of paste. We decided that I would call for someone to empty the ostomy bag before I tried to get out of bed to go pee. Also, she arranged it so someone would come check the pouch at least every two hours through the night. Our thinking was if we could keep weight off of the seal, maybe it would hold up better. It was a long night! It felt strange to call for help with emptying when I'd had an ostomy for so long and should have been able to do it myself. I can't say enough about the patient care staff at Cleveland Clinic though....they were all incredibly gracious and never made me feel bad about anything. We somehow made it through the night without any further leaks.
When the stoma nurse came Sunday morning, we had a whole different problem. She had a hell of a time getting all of the paste off so she could remove the rod and clean the skin around the stoma to prep for a new bag. The whole process was making me very anxious, so I called for some Valium which helped immensely. Eventually she got things to where they needed to be and there were no more leaks or issues for the rest of my stay.
One item of note from this visit: I had a much better idea of how to approach the transition to food and make it successful after my struggles following the first surgery. I started with much smaller portions and made sure I walked following each meal. Because of this, I was able to avoid any pain or nausea as I switched back to soft foods. The rest of my stay was pretty uneventful. My veins were horrible so the nightly poke for labs was a trial. I kept running low on potassium and magnesium so I was getting supplements via IV fluid. Things were otherwise pretty ho hum except for my bat shit crazy roommate! She was an older lady and I don't know if she was just an evil horrible person or had dementia or some combination of the two. She refused to take any kind if pain pills and then laid in bed moaning and complaining about being in pain. She finally insisted they bring her a new bed as she was convinced hers was bad and that was why she was in pain. She would wait until midnight and then flip on all the lights on her side of the room, start calling the nurses, and then berating them for things when they came to the room. It was crazy! She was released a day or so before me and I was never so glad to see a person go in my life!
Really, this recovery has been much easier than I expected. It helps that my incision is much smaller, but I think part of it is just that my body is already used to the ileostomy so it's been a smaller adjustment than last time. Plus I went in fit and healthy this time instead of all bedraggled from UC flares. The main problem I am having is some dissatisfaction with the new stoma. The opening is at the bottom, which isn't a huge deal. The real problem is that then opening seems to have pulled below the surface of my skin. I can't see any kind of hole anywhere on the stoma, even using a mirror to get a close look at the underside. The output comes from this crease in between the stoma and my skin, so it basically outputs right onto my skin. Keeping a pouch on has been a nightmare. I did changes on Friday that lasted 5 and 18 hours respectively. The pouch I have on right now has been on for about 27 hours, so hopefully it will keep working for a few days. Leaks suck! They make you feel helpless and kind of like you're in prison or something because it gets scary to leave the house not knowing if you'll have a problem. I plan to call Dr. L's nurse Monday to talk about this terrible stoma. I want to know why he made it this way and if there is anything to be done about it. It's kind of hard to think about because I can't decide if it's worth it to potentially go through a revision. Another surgery sounds awful, but so does three months of not being able to keep a seal on a pouch. Sigh.