Pain is temporary

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever."

It has been 14 days since my surgery. Today was the first day that I could tolerate or had the energy to sit here long enough to type this. I won't lie to you about where I've been, where I am or where I'm headed.

I had no idea what I was truly getting myself into with this surgery. You can do tons of research, talk to people that have been through it and get as knowledgeable as you think you can, but it isn't like going through it. I was so optimistic and I was so sure that I was strong enough to beat this, but I found out real quick how fast your walls can come crumbling down. I don't write this to discourage anyone that may be facing this surgery, but I write this as an honest woman that is suffering.

First, let me tell you where I've been. My surgery was almost 6 hours long. I can't tell you how good I felt going into it knowing that I had an army of people in the waiting room. I had no idea how much I was loved or how important I was to those around me. Amazing how we walk so blindly through life sometimes. We are much harder on ourselves than anyone else is on us. I take that with me. I don't remember a whole lot about the first couple of days. I remember few faces or conversations. In fact, I don't even remember walking the second day because I was so incredibly drugged. On the third day, I start to remember things. Morphine is easily addictive, especially when you add it with other pain medications. You may not crave it after only a few days, but your body does. Someone said to me in the hospital that I looked like a Heroine addict while I was trying to come off of it and my response was, "I feel like one." My body would shake and ache like I had the flu, I would feel sick to my stomach, I would be incredibly cold but pouring with sweat. My pain wasn't tolerable at that time and I chose a bad time to stop the Morphine, but I'm glad I did it and switched to something else. That was my first stepping stone. Even though today, it is still hard to count my blessings. Because I had such a horrible time with the Morphine, I tried not to take anything the 5th and 6th day at the hospital and then day 1 and 2 at home. By day 2 at home, I was in MUCH pain. Not only that, but I had a new phobia....eating. I couldn't take the smallest bite without fear that it would get stuck somewhere between my throat and my bag. There is a chance that you can get a blockage from certain foods when you are wearing the bag, but I wasn't educated well in the eating department and I didn't realize that the chances of blockages were small. I went almost 2 days without eating and then my body gave out. Unfortunately, it decided to give out in the 25 minutes that I was actually alone with Emma. Bless her little heart. She was such a big girl. I'm very proud of her. Not only was my pain sending me over the edge, I wasn't sleeping due to it and my hormones were out of control. I had thoughts like I never have before. Some of those are still too hard to deal with and some I'm still struggling with. I spent 4 more days in the hospital. It was definitely needed. I needed to get my pain under control, I needed to be reassured that I was okay, I needed education on food and I needed some sleep.

My first three days at home weren't much easier. I am going to be very graphic during the next couple of paragraphs, so please don't read on if you don't have the stomach. My first day at home, my bag exploded on me while I was sitting on the couch. Nothing like having liquid poop pour all over you. Bill and I had never put a bag on ourselves because I've had hospital nurses and home health care nurses to do that. I still have a very hard time looking at my stoma and it makes me weak in the knees when I think about it. So, Bill and I tried our hardest to change it...3 or 4 times. Then, we called in the home health care nurse and she tried several times to get a bag to stick, but my skin had a reaction to the adhesive on the bag and my skin was becoming raw with blisters...therefore, the bag wouldn't hold. Your skin has to be completely dry in order for it to hold properly. We ended up at the ER to have a stoma nurse help me get one on because you just can't go without one. That isn't really an option. I was in a lot of pain at that point and very tired. We were in the ER until 4am, but it was worth it, because she was able to get one to stick. Later that next day, I broke out in a horrible rash. I still have it and I have no idea from what. I'm hoping my nurse can tell me today. It didn't start out itching, but now it does. I'm pretty sure it is from the adhesive as well. We'll see...

The days are hard right now. I can only eat 5 to 10 bites every 2 hours - while I'm healing and my digestive tract is learning how to handle food again. I have to empty my bag every hour to 2 hours. If it is too thin, I have to take medication so that it doesn't dehydrate me. I don't have an appetite, but I have to eat. Nothing smells good, tastes good or feels good. Whenever I'm not eating, I feel sick due to my stomach being empty and then I feel sick after I eat because it is full. I have a bag, but I still have to go to the restroom to relieve all the mucous that my small intestine is creating. That is like having a bowel movement. I don't always have control of that and I lose it all over myself. Control is getting better though, except when I sleep. I hear that will be an issue the rest of my life though, losing control while I'm relaxed and sleeping that is.

I can't tell you how undesirable I feel, how gross. I know in my head that I don't smell, but I'm still terrified that I have a horrible odor. I started to push everyone away and then everyone called me out on it. I don't know how to ask for help with this. I feel very alone and very helpless still. Each day gets a little better and I know that it won't always be this way, but each day presents a new challenge right now. I know that you all try to be helpful and tell me that it will get better, things will change, it won't always be this way.....but my body, mind and heart ache right now. I mourn the life that I had before this surgery. I took so many things for granted.

My goal - to make it through the next 10 weeks and get this bag off!!

Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis