Thursday, April 17, 2014. It’s surgery day, again. I wasn’t apprehensive or worried. This picture was taken in registration that morning. The message on the ostomy bag says “Give me the Barbie butt, please. Maybe even up the left side a little. J” You can’t see my sweatshirt well but it’s purple with a large pink smiley face and says “girls rule”. The plan was for me to be in surgery before noon, in recovery awake with family within a couple hours and home by Monday to recover at home, working again. Sunday was Easter. I had already had a lengthy meeting with the surgeon who again recommended the proctectomy for me. My colitis was so severe when first diagnosed that my GI did not recommend j-pouch surgery for me. The surgeon agreed. It has been two years and I’m still having pretty high output from my ileostomy which could make for a very grumpy pouch. It’s been six months since I had open abdominal surgery for a complete hysterectomy and they saw few adhesions so this surgery and recovery should be very similar. They won’t have to open my abdomen completely again.
Three-thirty and my family are still waiting. The hour a half time it was supposed to take for surgery has come and gone. Fours after they started, it’s finally over. There were complications. It took hours to even get through all the adhesions to the little piece of colon, rectum and anus. I wake up in recovery with an abdominal drain, small glued holes everywhere, an ugly belly button, again and some huge stitches in my bottom. I was expecting stitches, I’ve had two children. I had no idea the incision site would be that big.
I don’t care about complications. Immediately, I start asking if I can get up. My plan is to get out of this place and get home. It’s not to be. I have to stay in bed a while. Doctors kept popping in and telling me my labs are off, they have to get this back in balance, I need this or that, I have to eat. I keep asking when I can go home. Maybe tomorrow, they say. One leans down by the bed and asks if I have ever had problems with my kidneys in that past. That should have been a warning sign but I’m too focused on wanting to get out of there. Nope, I say, and then ask the nurse if I can have a popsicle. My labs don’t improve. My heart rate is too high. They want to do a CT scan of my abdomen and then maybe they will let me go home. By now it’s Monday. I’m still asking every time a doctor comes in the room, when I can go home. Maybe by Wednesday, they say. Finally, they arrange for the CT scan. I still haven’t eaten, but have convinced myself that I will choke down a few bites and they will let me go home.
They bring me some soft food. I try to fake it and eat a few bites. My guts defy me. The CT scan plainly shows a big pocket of fluid in my pelvis. The nurses’ log clearly shows my output to be over 5 liters in 24 hours. No matter what they hang on my IV pole, the labs still show something missing or off. My heart rate is still over 140. It’s Tuesday morning and the resident walks in the room. I look at him and say, “so,” already knowing that I’m doomed but not wanting to admit it to myself. I can see it in his face, he doesn’t want to admit they haven’t been able to slice into me, stitch me up and everything be perfect. He looks pained and he just says, “you’re ostomy output has been over 5 liters.” That’s the moment I accept I am once again the difficult patient, the hard case. My mother is in the room. He asks if I have eaten and when I try to say squeak out a yes, she jumps in and tells him the truth. I took two bites and she’s not sure I swallowed the second one. I ate a popsicle, well most of it.
The surgeon comes to see me later that day. I’ve accepted that I just have to stay in the hospital. They need to watch the pocket of fluid, makes sure it drains, get my electrolytes back in balance and try to get food going through my system again. We may need to start some TPN, she says. “NO.” It’s automatic, maybe kneejerk from me but I am not going on TPN five days after surgery. TPN is total parental nutrition. It’s given through a vein and completely skips the GI tract. TPN might be a shortcut for them to get everything back in balance but I know that it is hard on your veins and hard on your body. Your liver, pancreas, gallbladder and kidneys are meant for TPN as a fetus when you have an umbilical cord. My veins are already crappy. They have already whispered in my ear asking if I have had trouble with my kidneys in the past. I’m not agreeing to TPN right now.
More bad news, the abdominal drain has gotten turned so it is not directed to the pocket of fluid. It will have to be pulled since it’s not doing anything. That means nothing is there directly draining the fluid. It leaks out when I move through the stitches in my bottom. I settle into a routine of early labs, then bags, bottles and pills of whatever I need for the day to try to get everything balanced again. IV sites don’t last. Every time I get up, fluid rushes from my bottom. But I’m still determined. I get the nurses to wheel me to showers. I do my best walk, little at a time. I’m wearing huge maternity mesh underwear and pads to help with fluid and even though food seems repulsive, if they ask me to try liquids, I do. Soft’s, I do.
The weekend rolls around again. Maybe I can try some solid food since things are looking some better. I do. On Saturday, a resident has the bright idea to put in what he calls a “mushroom drain”. This drain will go in my bottom at the top of the stitches right in between them. It will allow the fluid to drain better. It’s a tube with a little cap on the outer end that looks similar to a mushroom. He tells me it won’t be fun but I’ve been through a lot and can handle it. Wow. No anesthetic, they just shoved that tube right in those stitches. Then they numb a little spot on your butt cheek and put in a couple stitches to hold in place. This is not the Barbie butt I had envisioned. It’s the weekend, they have trussed me up and given me food. I decided to try for home again. Sunday morning it’s the first thing I asked. And wouldn’t you know it, I got lucky. Another resident looked at my labs that morning and they were stable. I was still dizzy when I got up for very long, my heart rate was still high, my output was still high and fluid was still pouring out of my bottom but my labs were stable and I wasn’t puking solid fluid.
He let me go home! If I had had any idea what was too come, I would have stayed the next week instead of begging to go again.