I wrote my last post the night before I went in to have my rectum, anus, and jpouch removed. I thought that it was going to be hard. I thought of it as the worst case scenario, my worst nightmare. I had no idea how horrible it was going to be. I tried to find how this surgery and recovery went for other people. I scoured the internet. Looking at blogs and going deep in comment threads on posts from years ago. I tried to find anyone sharing their experience of the surgery I was about to have. I quickly found that the people writing about their experiences with this particular surgery fell into two groups. One group had little to no complications and went on to recovery quite well. They freely shared their experiences and posted frequently how easy everything went for them. The other group wrote extensively about their experiences with ulcerative colitis or Crohn’s disease, mentioned they were about to have the surgery, and then never posted again. If they did happen to post again, it was on other topics related to chronic illness with only a brief mention of the surgery. Something like,”It was worse than hell and I can’t bring myself to think about it long enough to write about it. I barely survived.” I had run out of options. I knew I couldn’t continue to live with the intense pain, complications, and nausea the jpouch was causing me. I had a pain block put in my spine to try and make the pain more tolerable. Nothing worked or was a long term solution. The only option was to remove everything that was connected to the failing jpouch.
It felt like rock bottom. I thought things couldn’t possibly get worse. My life felt completely out of my control. Even though things were tough, I wanted the pain to stop. I had to become optimistic. I had to believe I would be one of the lucky ones. I’d already been through so much, I believed it was my turn to catch a break. I was filled with hope that my pain would be managed and I would recover quickly. I used every prayer and good thought that was sent my way. I visualized myself in white healing light. I was calm and centered and thankful to be on my way to pain free.
I arrived at the hospital early in the morning. I was nervous but I did everything I knew to center and calm myself. The hospital had just recently started using a system called Bair Paws. It’s a paper gown with areas for a tube to be connected. The tube pumped a constant stream of warm air around my body. It was very comforting. The nurse explained it was shown in studies to help recovery times. It was great and helped to keep me calm and optimistic.
They did the normal things before surgery that are annoying but I’ve gotten used to. Poking me excessively trying to find a vein for my iv, arguing with me about my piercings (I refuse to take them out and just put paper tape over them) and washing with a special soap. Everything went quickly and before I knew it we were in the operating room.
The operating room is a magical place. Anyone who’s had a lot of surgery can identify with this. If you’ve only had one or two, you’re most likely too scared and disoriented to notice what’s happening. Everything moves so fast, if you blink you miss it. A team of people in an ice cold room moving like synchronized swimmers. It’s a beautiful thing to watch people who do their job well. My body becomes part of the performance. In perfect unison, in teams of two, they pick up each of my limbs. Long stockings go on each leg as each arm is covered and strapped to boards extending straight out from my body. I’m spread out like a starfish when a mask is placed over my mouth and nose. The smell of the plastic is odd and sharp but familiar. I take deep breaths as someone strokes my hair and face. Telling me it’s all going to be ok. My whole body begins to feel warm and tingly. It’s like an orgasm on steroids.
The next thing I know I’m waking up in recovery several hours later. This is going to sound unbelievable but I felt better immediately. I had been nauseous for years, a constant nagging nausea. I knew, being in tune with my body, that the nausea was directly related to the unused j pouch. Multiple doctors and digestive health professionals told me I was wrong. They said it wasn’t connected physically and therefore shouldn’t be causing it. I held firm that even though it wasn’t physically connected it was made of the same tissue. Maybe the core cells were communicating to each other or maybe it was a signal to my body to have it removed? I felt so vindicated and happy when I woke up in recovery without that nauseous feeling for the first time in years! I was in pain but I was so grateful that I didn’t feel that awful sick sensation anymore. I am still so happy and thankful that it is gone.
I was doing amazingly well and was far exceeding expectations while in the hospital. The incision on my stomach closed nicely with only one small wound that needed to be packed with gauze. A huge improvement over the enormous wound I had on my stomach in December 2015. Thankfully I didn’t need a wound vac this time. The main area for concern was the wound on my bottom. It was intense. They had removed intestine(jpouch), my rectum, and my anus. Essentially, I was cored like an apple. The whole middle chunk of my body was missing and it wasn’t an easy fix. Some people are able to be sewn up immediately after and they heal quickly. Unfortunately, that wasn’t an option for me. I was left open. My wound needed gauze to keep things open so it could heal from the deepest part out. My wound was a long tunnel that was over a foot deep with curves and corners going in different directions. I ended up with a long jagged tunnel partially because I had battled fistulas for years prior to this surgery. There were no clear margins or straight lines. It was a difficult wound to get to and had to packed by feel. There was no way to see that deep into my body. It needed to be packed with gauze twice a day to absorb blood and also keep the outside open while the inside healed. If the outside closed before the inside healed, it would create a pocket for infection to take over. Twice a day I endured 24-26 inches of bloody gauze being pulled out and then new gauze being shoved into my wound with a long wooden stick. There is no way for me to begin to describe the horror. It felt like a medieval torture technique. I’ve had chronic pain for years due to ulcerative colitis, nothing prepared me for this.
I was given high doses of morphine, vicodin, and lorazepam an hour before the team would come in to do the packing. The team included my surgeon and about 5-10 medical students. I was totally past being shy about my body or embarrassed that my legs were open with so many people in the room. I just wanted to get the torture over as fast as possible. I was willing to try anything to lessen the pain. I found that if someone talked to me during it helped to distract my mind a little. I still screamed in agony but it made a small difference. They came twice a day to pack my wound so we quickly ran out of things to talk about. It became clear to me that in their patient meetings someone was assigned to research things to distract me with. It really tickles me that it was part of their job to research weird shit to talk to me about. They really got into it and came up with some off the wall stuff and reality tv gossip. It was a special kindness that I really appreciated.
After four or five days in the hospital I went home. I was scheduled to receive home health care for wound management twice a day at home. Unfortunately, with home health care you have no idea who they are sending. They would tell me one person was coming and a different one would show up. Some nurses had a lot of experience and others had no idea what to do. I would have to trust that each new person would pack my wound appropriately. The first appointment it became obvious that it wasn’t going to work if I wanted to live. The first nurse they sent to my house was one that I had filed a complaint about when I had the wound vac. She is completely incompetent and should have her license revoked. She improperly applied the wound vac causing me to have an terrible reaction. My skin broke out in a full on painful hive/cystic acne across my stomach causing permanent scarring. I told them I never wanted to see her again. When she showed up at my door, I was shocked.
I had already taken my dose of pain medicine and they couldn’t send a different nurse in time to take her place. I had to let her in and I had to let this woman do the packing of my incredibly difficult wound. I have felt very powerless during this experience but that was a real low point. I tried my best to explain how to pack my wound. She measured out 26 inches of gauze with a measuring tape and I laid on my bed and hoped for the best. Given the location and the intensity of the pain I couldn’t see what she did. I assumed she followed the instructions and I would call and request again that she never be assigned to my care. I fell asleep and woke up at 2am boiling hot. I woke up my friend who was staying with me and I could tell by the look on his face that things were serious. He immediately scooped me up and took me to the ER. I had a fever of 105 and I was experiencing symptoms of sepsis. I was admitted back into the hospital after only a few hours at home. When they went to pack my wound at the hospital, we found that the home health nurse had used less than four inches of the gauze. I could have beat the shit out of that woman. I’ve never been more angry. She lied and could have killed me because she didn’t do her job properly. She caused the distress and infection in my body. I ended up staying in the hospital for another week on antibiotics and fluids. After that, there was no way I could trust home health. Thankfully, my friend that was staying with me was willing to learn how to pack my wound. I know he saved my life in multiple ways during the last year and I am forever grateful. He really stepped up and did what needed to be done.
My nurse at the hospital taught my friend how to pack my wound which meant they did it three times in a row. She did it first and he watched. Then he did it and she watched. Then she did it again to show him how to do it better. It was awful but I tried to keep it together because I didn’t want to scare my friend. He was white as a ghost the first time he saw my wound. He has said it looked fake, like from a horror movie. That there’s no way a person could live with holes that big in their body. He had to brace himself against the bed to not pass out. He knew I needed him to do this for me and I don’t know how he managed but he did my wound packing twice a day for months. We went through bags and bags of gauze. He was able to keep going through my screams. He knew that even though it hurt me it was for my good. He really is the only person who knows how bad it really was.
Every month we would go see my surgeon. He would check the progress of the wound and would use silver nitrate to burn the edges to promote healing. After several months it was clear that because my wound was so curved and jagged, I would require a revision. It was the only way to make sure everything healed properly without a pocket. It was heartbreaking news.
I was scheduled for the revision and went into surgery again. This time they were able to cut out a cone shaped section with clear margins. The part to the outside was a huge circle going into a point as it went into my body. It made it easier for my friend to pack the wound and it would ensure it would heal properly. We now had to do the packing three times a day because there was so much blood. It was the worst pain I’ve ever experienced. I could not get a handle on it with pain medicine and I couldn’t stop screaming and crying. I finally came up with a plan. Instead of bracing myself for the pain and trying to distract my mind, which wasn’t working anymore, I decided I was going to face the pain head on. This was around the time Stranger Things came out and I pictured myself going into “the upside down” I visualized myself in total darkness and prepared myself to fight the pain head on. In my mind I taunted it,”Bring it on bitch! I’ll fuck you up!” I attacked it with every strength I could muster. Visualization and a lot of morphine got me through the months after the revision. It was by far the hardest thing I’ve ever had to do and I did it.
My wound has finally closed. My insides are coming together and continue to heal and strengthen. Most days I’m hopeful for the future. I’m looking forward to getting to participate in life. I hope that the more I share about my experiences that it helps me and others to heal. I know even if I used every awful descriptive word I could, I still wouldn’t be able to write a tenth of the horror I experienced. When people make snide comments about how long it’s taking me to heal, I realize they have absolutely no concept of what I’ve been through. I wanted to write this to say I’m surprised I even survived. I also wanted to write about this because I want to help other people feeling alone. It’s possible to have horrible complications from surgery. It’s possible to survive it. I prefer to go into things with my eyes wide open. I want to be as prepared as I can be. I wish I could have had someone say these things to me so I wouldn’t have felt so alone. Writing helps me process things. I have more to write about and more to process through. Writing this out helps me see how far I’ve come. It helps me realize that it is unbelievable that I survived. When I get discouraged of how far I have yet to go, it’s good for me to look back at where I started.
If you would like to support my healing, please consider donating HERE. I appreciate anything you can spare. I have been unable to work since having emergency surgery December 1st 2015.