Where I Am Now
I'm not usually an angry or aggressive person. If you notice in my earlier blogs, I tend to withdrawl rather than lash out. But the combination of the surprise of what surgery was planned, the lack of communication WITH ME, my lack of having had a cigarette for days without a patch, and her "you are in control" bullshit, sent me over the edge.
My husband said that people kept looking at him like he should try and calm me down but he knew I needed to do this. That this had been building for so long and that if he tried to stop me or calm me down, then I would have just lashed out at him. He was correct.
So my husband took me home and he began to explain to me what they doctors wanted to do and how they planned to do it. He had stayed in my room and listened to my doctor while I was making my escape, running from the security officer, and getting my IV removed. He allowed my doctor to "draw for him" and my husband did his best to draw for me at home to relay the information. It turns out that my fistula was left to grow for far, far to long and had done heavy damage to my bladder but the issue now was my colon and the 98% blockage. With my history of this, it could take much longer to get the swelling and inflamation down and I could continue to irratate it when I ate. They felt the better way, the safer way, to handle this was to give my large colon a break. It was full of waste and it needed time to be able to push the waste through without adding more to it. If they pulled my small intestine out, that would stop "adding to the problem", give the bowel and chance to heal and pass the stool, and then I would be able to have the fistula surgery faster. My husband supported the surgery but if I wanted to wait and see how fast my body would begin passing stool again, he would support that for me. Whatever I thought was best. (He's the greatest man in the world for me, I love him so much!)
He also told me that the doctor told him that if I changed my mind, to call him back and he'd re-admit me.
I really thought I had just basically started over by walking out of the hospital but I hadn't. I could pick up right where I left off.
I agreed to do the surgery. I smoked a ton of cigarettes and took a nice, long, hot shower and that evening we got a call that they had a room for me and back to the hospital we went.
I amazed myself. I was upbeat, smiling, laughing with my nurses who couldn't believe that I had walked out of the hospital earlier, and ready to try and get this done.
Because I agreed to this surgery, my fistula surgery was schedule two weeks after and that made me feel soooo much better.
Surgery went well and my stoma was placed. They were able to do it via laparoscopy so my incisions were small. I also started "putting out" by the time I was back in my room so that was a great sign as well.
That was a week ago today.
I was up and mobile, eating, and able to care for myself by the end of the day Thursday. I got to go home Friday. They went over how to change the bag and the whole system with me on Friday and I had a home health nurse coming on Sunday. I felt good. Sore and maybe dirty, but I felt good and my mood was positive.
My son brought me home and stayed the afternoon with me to make sure I didn't have any issues. My husband was home with me in the evening. Saturday was my first solo day and my house needed attention. I had energy and although I was a little slow, I was mobile. I got up and made my husband a big lunch for him to take to work, made him some breakfast and sent him on his way.
By 11am I noticed my bag was leaking around the ring and had gotten on my nightgown and pants. I was mortified. I had only watched them change the whole thing ONCE and I had never done it myself and I was home alone. I watched a video online and got my steps down in my head and then went to change this myself. It was hard. I made such a mess. It was so gross and disgusting that I just stood their crying for bits at a time. I didn't have a mirror in the bathroom that would allow me to see what I was doing. I had ordered one but it hadn't arrived yet. So I had to walk into my bedroom to see to clean and then back to the bathroom to work with the supplies. My stoma is large, well I consider it large, and it's oblong at an angle. Trying to cut it to fit was HARD. The lady in the hosptial just cut it right the first time but I was back and forth from my room with the mirror to my bathroom with the light. It took me almost an hour to do it and then I had this horrific mess to clean up as well.
The whole thing drained me. Most of you probably have this down to a science but I'm so clunky and unsure that it just sucked my energy right out of me. After my husband went to bed and I just sat and cried the rest of the night. Everyone was offering me incouragement and support and I just wanted to cry.
I wanted to be strong and so I worked at it. When nurse came on Sunday, I was in a fair mood. Not crying but not easy to laugh either. She was so nice and she listened and I told her that I had some itching that had been getting worse thorugh the morning and we went to look at it.
I hadn't put my ring on right and I had stool sitting on my skin and that was irratating it. So she changed it again for me and showed me how to protect this area that was itchy and red and we decided to go without the ring. She didn't like them anyway and said that people do well without it. I had ordered the paste but it hadn't come yet so we didn't use any support there and that was a mistake. By that night I had another pool of feces on my skin all along the bottom. Thank god my husband was here. I got to get in the shower and we stumbled through putting the whole set-up on yet again. And this time it was perfect. No leaks, no itching, plus we had the paste for extra protection.
That weekend was so hard and just wiped me out. I kept thinking of everything I had gone through and how I never should have been in the place to begin with and it just made me feel worse. So that's why I started this blog. To get all that out of me. I put it down for others to see how if I had been taken seriously 2 years ago, I would not have been stuck where I was now.
I went to a doctor looking for help and because they ignored me, I am now in a much worse off situation. It has grown much more complicated and I AM THE ONLY ONE DEALING WITH THAT! It didn't hurt my first doctor to be a complete bone head and deny my symptoms, it only hurt me. It didn't hurt my colonoscopy doctor to deny my pain, it only hurt me. And because of those two my issue was allowed to grow and fester to the point that I require two extra surgeries and I might lose my bladder on top of it all.
I know some of you are looking for a "happy ending" but I'm not there yet. Not even close. I'm fighting my depression, I'm getting out of bed in the morning, and I get though my day doing as little as possible for now. I'm on a mental forgiveness program in my own head. I'm just allowing myself to feel all this horriblness and I hope that one of these mornings I will get up and feel more like tackling life again. I'm just not there yet.
Today marks the one week mark from my surgery. I just had my second home nurse visit and I changed my set up in front of her and did well I guess. I've had to change the whole thing 5 times in 7 days and that was just way more than I bargined for. I know it will get better. It will get easier. I know those things but I still feel very weighed down with it all.
Thank you to everyone who took the time to read this and thanks to those who commented. I don't have a reply option to talk to you all individually so I'll try and post under each part to thank you. My next surgery is a week from tomorrow. This is the one where we actually address the fistula and my poor bladder. Then I will need a third surgery to connect everything back and hopefully I will no longer have a stoma. But that's months down the line.
I'll keep you updated