A mere 365 days

December 13, 2009

Another painful anniversary this weekend. One year ago on Friday, I came home from work early, a complete mess. My ostomy bag had sprung a leak, not once, but twice. The first time I was prepared. I locked my office door, changed into my extra outfit that I carried around with me for such occasions (because they were happening more and more frequently), and changed my bag. When I changed my bag, it was quite painful. My skin stung so badly, and I knew I didn't get a good seal. My skin around my stoma (stoma = the part of my intestine that was sticking out of my abdomen) was looking bad. When my bag started leaking the second time, I wasn't prepared. I had already used my back-up supplies, so I let my boss know I had to leave, sobbing as I did so.

My dad and his wife where visiting for the weekend. We were going to celebrate Christmas together early. Dad's gift to us last year was that he laid brick around our fireplace and when I arrived home I found him finishing up the job, Jeremy and Barbara admiring his work. I headed straight to the bedroom and changed my clothes and my bag again. I was scared to move at that point. It seemed any movement caused my seal to break and a leak to occur. I honestly don't remember how many times I ended up changing my bag that night. The skin around my stoma was just too damaged to get any kind of a seal. We didn't know what to do. Jeremy e-mailed our ostomy nurse, Kelly (God bless her), and they tried to come up with ideas all evening long. If I remember correctly, Kelly even called us from her home to try to help us. Oh that meant so much . . .

Evening turned to night and things got worse. The bag kept leaking, and every time it did the output from my stoma spurted onto my skin which at that time had become almost an open wound. The pain was unbearable. I could sense the panic rising in Jeremy. We didn't know what to do. No bag would stick. I was laying in bed with chuck pads under me and basically cleaning up the almost constant output that was coming with paper towels, writhing in pain any time I didn't catch the liquid before it hit my skin. We couldn't keep up. I hollered for my dad and Barbara. Dry paper towels hurt on my skin, so Dad and Barbara kept warm, wet paper towels coming my way as Jeremy talked with Kelly on the phone. I was groaning and yelling the pain was so bad. I wasn't even concerned with getting a bag to stick anymore. I just wanted the pain to stop. Pain meds weren't helping. Kelly suggested I let warm water run over the stoma and my skin. (I was pretty sick around this time too. I was having a hard time staying hydrated, even with nightly IV fluids. I just couldn't eat and had lost so much weight. I was at the doctor's weekly and almost every week the scale read 3 pounds lighter than the week before. I was not in good shape.) I was too weak to stand in the shower, so Jeremy got a cooler and set it in the tub. I sat on the cooler, hunched over and let the warm water from the shower wash away the output that continued to spew out of my intestine onto my stomach. It stung at first and I sobbed, but within a few minutes, the pain subsided. I don't know how long I sat in the shower. I think it was like an hour and a half. I honestly don't know how we got through the night. I remember holding each new bag against my stomach, hoping that if I held it it would stay. I was exhausted and fell asleep at some point, only to wake up to the bag leaking again. I know I took another shower in the wee hours of the morning too. When morning came, we made our way to the Emergency Room. There was nothing that was working and I was at the end of my rope.

The ER doc was an idiot. He had no clue what was going on, but pretended to know. It was horrible. He told me there was nothing he could do and was going to send me home. I told him if he sent me home, I would be back because I could not live like this. And it was true. I was done. This weekend one year ago I had reached my limit. Of everything that had happened to me, I reached the end of my coping skills then. Had he given me any hope, I would have held on, but to tell me there was nothing he could do - that was it. There was no way in hell I could keep living like that, not even one more day. No way. If they didn't admit me to help me with what turned out to be a skin infection around my stoma, then they were going to be admitting me psychiatricaly within the next 24 hours, I knew that much. And I told my family that too. "I can't go on anymore," I said, sobbing. I don't know what my dad and Jeremy said to the doctor after that, but they admitted me to the observation unit after that.

I was there for a few days. Dr. T had just started on staff that week and Dr. V introduced her to me. He said she would be taking over my case as it was her specialty. She said she would look at the barium x-rays that had been done of my newly created j-pouch and see what she thought. If it looked like enough healing had occurred, she might go ahead and do my takedown surgery then, a month earlier than they normally do it. The takedown surgery meant I would no longer have my intestine sticking out of my abdomen. I would no longer need a bag attached to me. She was going to let me know the next morning. I prayed harder that night than I have ever prayed.

"I really don't know what I believe about the Bible or even about you God, but I do know that you promised that you wouldn't give me more than I can handle. I'm telling you right now, I think this is it. I don't think I can handle any more. Are you going to stick to your word?"

The next morning she came in and said the barium x-rays looked good and that she would go ahead and do the takedown surgery on me when a spot opened up in the surgery schedule that week. She said scar tissue had formed around the opening to my pouch, and she was going to have to try to dilate me at the beginning of the surgery. If the dilation took, she would be able to proceed, but if it didn't, I might still end up with an ostomy when I came to. Again, I prayed hard. I prepared myself for waking up from the surgery with a bag still attached to me. It was such a difficult way to go into surgery. I remember after I woke up from the surgery I kept asking the post-op nurse if I had a bag or not. I was so groggy. I also kept asking where Jeremy was. Finally when the anesthesia had worn off enough I realized the bag was gone and I started to cry.

Relief is just too simple of a word.

I cannot believe how far I've come in a year. A mere 365 days. It's unbelievable to me. I no longer look like the sickly, defeated woman I was then. I'm no longer that woman. I may still be trying to figure out who I am now, but at least I know I'm no longer her!