My Worst Nightmare

Tomorrow I’m having the surgery that is my worst nightmare. The first time I heard someone talk about it, I cringed and silently thanked the universe that I didn’t have to go through that. When I tell you about it, I bet you will do the same. But, I should probably start at the beginning.

Around the time I turned 18, I started having an awful cramping stomach ache everyday. I am going to do my best to be as open and honest about my experience as possible. Some of that openness will be things most people consider private and graphic, so stop reading now if you can’t handle that. I was also experiencing urgency and was only expelling blood when I went to the bathroom. I knew something was majorly wrong. I went to several doctors, had more colonoscopies than I can count and was misdiagnosed a few times before landing on the diagnosis of Ulcerative Colitis (UC). Please click the link for more information. A short description of UC is that it is a chronic autoimmune disease that affects the large intestine and rectum. It has similarities to Crohn’s Disease but is contained within the large intestine. The cause of UC is unknown. It is thought to be genetic and people on both sides of my family have been diagnosed. For three years, I tried to manage UC through medications that had severe side effects. My hair was falling out, I had horrible mood swings and the dreaded “moon face” from high doses of steroids, and I was hospitalized with pancreatitis. I tried every natural remedy I could find. I drank pure aloe juice (gross), protein shakes that tasted like cardboard, twig tea, and ate organic coconut lumps. I went to acupuncturists and allergists. I worked out as much as my body would allow. I did everything “right” and nothing worked. I was scheduled to have a total colectomy with a Jpouch in February of 2005.

Unfortunately, I fell extremely ill at the beginning of the year. My two roommates were back home for winter break and I was alone in our apartment. I was laying on the couch watching tv with a heating pad across my stomach. At this point I had become used to the chronic pain and my pain tolerance had become extremely high. That turned out not to work in my favor. An average person would have gone to the emergency room way before I did. I only realized something was wrong when I had lost consciousness from pain and sepsis. I woke up and it was dark out, I had no idea how much time had passed. I called a friend to take me to the emergency room and at this point I was in and out of consciousness. I had  emergency surgery  immediately when I arrived to the hospital on January 5th 2005 to remove my entire colon. The surgery saved my life.

When the entire colon is removed, they create an opening, or stoma, in the abdominal wall, called a ileostomy. The small intestine is brought out of the skin and a bag, is attached to the stoma. Stools pass through this opening and collects in the bag. A bag is worn at all times, is easily emptied into the toilet, and changed a couple times a week. The ileostomy  was part of the surgery and was intended to be temporary. The other part of the procedure was to create a j pouch. Surgically creating a “J” shaped reservoir, out of small bowel (small intestine) is an alternate way to store and pass stool. It was an ideal situation. After I healed for three months, I would get rid of the ileostomy and be reconnected. Everything would be inside and I would appear and function “normally”. At the time it was so important for me to be “normal” I was young and single and I genuinely thought no one would love or desire me with an ileostomy. I couldn’t have been more wrong.

At the three month mark I was not fully healed. I was very weak and running fevers off and on. I couldn’t stand the thought of having to deal with the ileostomy for one more second that I pressured my surgeon into reconnecting me. I don’t think it helped my chances of it working but I don’t think it’s the reason it didn’t work. I had what is called a “takedown” Which means they took the stoma down from my abdomen and reconnected it to my small intestine and the j pouch. I went for a few months like that not feeling great but managing. I was able to leave my parents house and go back to my apartment. I was still recovering when my dad called to tell me my mom had died unexpectedly. My mom died in her sleep and my dad went to wake her up and found her. He was in shock when he called me. I was casually flipping through a magazine when he called and said, “Mom’s cold.” I responded with, “Give her a blanket.” I had no idea he would go on to say, “I think she’s died.” It was a surreal awful moment. I rushed to their house and then I stayed to comfort and be there for my dad. I was going through my mom’s things, trying to get affairs in order. Looking back, I wish I would have taken the time to greave properly but instead I went to work. I was feeling increasingly worse and more weak everyday. I didn’t want to admit that the surgery didn’t work, that the pouch was a failure. I was running a fever for a few days and finally one night in the middle of the night my body had all it could take. I woke up to a voice saying, “If you get up right now, you will be ok. If you stay in bed, this is it. Its over.” At this point in my life I was not big into spirituality and if this hadn’t happened to me I wouldn’t believe it. The voice was so strong and it was just a knowing in my soul that whoever that was was telling the truth. I laid there in extreme pain unable to move and thought about my life. I had gone through a horrible abusive relationship and breakup, spent years suffering from UC, and my mom just died. I was in a very low point in my life and all I wanted to do way just make it all stop. I didn’t want to hurt anymore. Then the thought of my dad finding me dead a month after he had found his wife. I couldn’t do that to him. Both of my parents saved my life that night. I just held onto the love I have for my dad and gathered the little strength I had in my body and I crawled out of bed onto the floor.  It took a long time and all of my strength to crawl out of the front room of my parents house to the hall. My dad was on the other side of the house. I tried to yell for him but no sound would come out. I crawled a little further into the living room and I just started knocking things over trying to make enough noise to wake up my dad. He came out to the living room, scooped me up, put me in the car and took me to the closet hospital. Unfortunately, they are a small town hospital and no one had a clue what to do with me. I had a fever of 105.2 and the only thing they thought to do was to dump buckets of ice in my bed to bring my temp down. The doctor threw his arms in the air and said,”I have no idea what to do.” Someone eventually thought it was a good idea to put me in an ambulance and get me to my surgeon. I remember very little from that time. I do remember the lights and sirens of the ambulance as we rushed to the hospital. I also remember one of the EMTs holding my face in her hands, trying to get me to focus on what she was saying. She said, “This is bad, really bad. You could die. I need you to fight for your life.” I knew I would be ok, I got up. That was the deal. If I got up, I was going to live.

I ended up having emergency surgery that night and was once again given an ileostomy. This part of my life is still a little foggy. I know I was in the hospital for awhile and things were rough but I recovered and went on. After about a year or so my surgeon urged me to try the takedown again. The thought was that I had completely healed and the chances of it working were good. I wanted to be “normal” so I tried it one more time. Right away it was clear that it wasn’t working. Instead of going back to an ileostomy immediately, I stayed in the hospital for six weeks without food or water. I was given TPN nutrition and fluids through an IV to let my bowels rest. It was awful. Everything on tv is related to food, all people talked about was what they just ate or what they were about to eat. Even though my body was receiving partial nutrition, its not the same as chewing and swallowing. I feel like those six weeks messed up my relationship to food. I lost so much weight during this time that when I saw people from my life, some people said things that messed me up even further. I am a 5’11, cis female, who is beautiful by the beauty standards we have in our society. And now I was thin! Oh my goodness. It didn’t matter to these people that I had almost died, that I was suffering. Or that I was previously confined to a wheelchair because I was too weak to walk. All some people saw was my thinness. One person said,”You are so lucky! You look like a model. I would kill to lose weight so fast.” It is never acceptable to comment on someone else’s body, ever. It’s not a compliment. Just don’t do it.

Thankfully, I learned a lot through that experience and after I was given an ileostomy for a third time, I didn’t feel the need to be “normal” or try to get rid of it again. I saw it as the literal life saver that it is. I was thankful for it. For the last 9 years or so, I’ve been doing relatively well. I still technically have  UC, it is in the category of invisible diseases. So, even though my desire to be “normal” had gone away, no one knew what I had gone through by looking at me. No one could tell what I was still living with. I liked that. I didn’t want anyone to feel sorry for me or treat me differently. I was sick of being sick and I was tired of talking about it. So I didn’t talk about it. I know for a lot of you, this is the first time you are hearing about this. For some of you, I vaguely referred to being sick but held back on the details. There are a handful of people that were there during this time or maybe one late night I spilled it all to you. I want you to know it had nothing to do with you, if I didn’t share with you. I just didn’t want to live that story anymore. I wanted to just live my life. I didn’t want to cry or experience the regret of some of the choices I made. I wanted to have fun and make the most of life. I went on a cruise, I went out dancing, I dated… a lot. Turns out many people can desire and love someone with an ileostomy! No one has ever been grossed out or turned me down because of it.

The last few years, I would have days here and there where I experienced extreme pain. There were days that I would be so nauseous it was hard to even think straight. I pushed through it. I am a fighter and I rarely complain or ask for help. I thought those were strengths but they are in fact major weaknesses. We need each other. We need to ask for help. It is lonely and unnecessary to live this life alone.

Now that I’ve had time to sit and think about my life. I see that the last year I was living in misery. I was nauseous almost everyday. I had pain every single day. It was wearing me down. I would be working on a client feeling nauseous and when I’d go to clean up my color bowls, I would vomit. I would feel a bit better and go right back to work. I lived like that for a year! I talked to my doctors and they had no answers. They would ask if I was pregnant and prescribe medicines that never worked.

I was caregiving for my dad and fighting to remove abusive negligent people that worked at the nursing home. I didn’t make time for myself. Thankfully, all of my efforts, the meetings with state regulations and elder care facilitators paid off. All of the horrible people were let go from my dad’s facility. It was a lot of work, but it needed to be done to protect my dad and the other amazing people he lives with. There was no way I could turn away from it. I witnessed abuse and I was personally threatened. There was no way I would walk away from it.  Around the same time that was wrapping up, started dating a new partner. Six weeks into being with him, he had a life threatening stroke like episode.  I couldn’t walk away from someone I thought I was falling in love with. So I did what I know to do. I didn’t leave his side for the first few days. I eventually only left the hospital to go to work. I stayed every single night by his side in the hospital for months. I fought for him to communicate when he lost his ability to speak. The experiences in the nursing home gave me the knowledge and the confidence to fight for his recovery. It allowed me the insight to get a communication board (a board with the alphabet) so he could communicate. His doctors were concerned with saving his life, not at all concerned with him as a human being. They were fine getting consent and talking to his parents while he was just a few feet away. They were ok making decisions for him even though he was in there listening to everyone talk about him as if he wasn’t there. I fought for him. I called out his doctors for that injustice and they listened. They took the time to have him use the board and be the one deciding his treatment. He got to have a say and a voice. In the final weeks of his hospital stay I was experiencing terrible constant pain in my j pouch. It was not connected but still in my body, just chillin. I had problems with it about once a year in the past. When that would happen I would call my surgeon and he would take me in for an outpatient surgery where he would clean out the pouch and stretch out the opening to deal with any scar tissue. I would rest for a day and be back to work, good as new. Unfortunately, we did that this time and I didn’t feel better. I was having a lot of pain.

My focus had been on other people so long and now my body was not letting me help or do anything for anyone. I was canceling appointments sometimes a half hour before the scheduled time. (I am so sorry for that) I was vomiting or feeling nauseous all day long. I had excruciating pain in the pouch. Pain pills were not even touching the pain anymore. It was a very scary time. Finally, on December 1st I couldn’t take it anymore. I had vomited three times a clear liquid into a ice cream pail size container, filling it to the top.  I went into the emergency room and told them I thought I was having a bowel obstruction.

It was terrible. I am a very had stick to draw blood or get an IV started. They tried 11 times before finding a vein. It was necessary to put a tube down my nose into my stomach to alleviate the pressure and remove the bile. It didn’t fit and ended up scratching and digging into the back of my throat not allowing me to speak.  It was horrible. My former partner was right there by my side, now he was able to speak up for me. Or so I thought. I went back to get an epidural and was totally fat shamed by the doctor. He looked at my chart, not at me and said, “You had an epidural before? Did it seem to work for you?” I nodded my head yes. Again not even looking at me he said,”Well you weren’t as fat then. It probably won’t work now.” I was shocked and horrified. I looked to my former partner to say something, defend me, request he examine me, anything. He remained silent. I felt so betrayed. I can’t believe a doctor would behave like that. I went into a major surgery without an epidural. I received one the next day when I was screaming in pain. I carry weight in different parts of my body. The bones of my spine stick out. My anatomy works perfectly to receive a pain reducing epidural. If I would have been able to speak I would have told the doctor that, among other things. Such as fuck you and I need another doctor! There are very few times in life that you get the opportunity to repay someone in the EXACT same way that they helped you. It still baffles me. I’m not angry anymore, I’m more sad for some people’s lack of empathy and understanding.

When they opened me up, my surgeon found the cause of my nauseousness. My stomach had a little tear in the lining. Somehow my intestines went through that hole and pulled my stomach out of place. He said he had never seen anything like that happen before. When they opened me up with an incision on my belly, they couldn’t find my stomach. Everything was out of place and tangled up. If I had waited much longer it would have killed me. They tackled the mess of untangling me and fixing a hernia. It was an emergency surgery so they didn’t want to take out the j pouch even though it was also causing me problems. It was too dangerous. So they closed me back up. Unfortunately, my incision became infected in the operating room causing tons of complications.

A few days into my recovery, my former partner was MIA. I text asking him to come and see me in the mornings. Hospitals run early. I was waking up at 5am, having the doctors come by, other visitors and trying to go for walks. By the time 1pm came around I was so exhausted and I would take a long nap. He ended up finally coming by one day in the mid afternoon and I was struggling to keep my eyes open. I finally just gave into it and fell asleep. At some point I woke up slightly to see him reach for my pain buttons and my eyes closed again. Little did I know, but while I was asleep he asked the CNA to push my pain buttons. She told him flat out, “No one should be touching her buttons. If she is in pain, she will wake up and push them. No one can do it for her. Don’t touch her buttons.” I had two pain buttons, one for my epidural and one just going into my veins I think. Both were high doses of morphine, dilaudid, and something else that I can’t remember. High doses of narcotics. They were on different schedules. One I think I could press every eight minutes and one was maybe every 30mins or every hour. I don’t totally remember.  I’m not sure how long he was there or how many times he pushed my buttons. I do know that he almost killed me. I came to unable to hear or move my body. The room was packed with strangers and machines. I know now that a code had been called and the S.O.S team showed up trying to revive me. I could see the concerned looks on their faces and  the feel of the energy in the room was total concern and hopeful that I would make it. I looked over in the corner and on a chair was my former partner. He had a blank look on his face and was just absolutely empty. There was nothing there. I felt like I had a hyper sense of reality, everything was very clear and I could feel the love and concern from all of these strangers. From the person who claimed to love me and want to marry me, there was nothing. Eventually, my hearing came back and I was informed of how incredibly close I came to losing my life. The narcotics had slowed my breathing down so much that it had almost stopped. I was so close to overdosing. That was the last time I saw my former partner. The hospital banned him and his family from seeing me. They would not release me if I was going to be going home to him. He had to move out of my house. He has acknowledged that he pushed my buttons. I am not sure of anything beyond that. The nurse that was on duty told me she got in his face and asked him what happened. Why did he do that? She said he denied it. During the time it took for them to determine what happened, I could have died. If he would have told them what he had done, they could have given me narcan. Instead I have thousands of dollars in bills for things I didn’t need. They did x-rays and blood tests. They were trying to figure out how I had taken such a terrible turn so fast. They were trying to rule out blood disorders and lung problems. All while he sat there silently. I will never understand why this happened. Again, I carry forgiveness in my heart but that doesn’t mean I’m not totally confused and horrified by his actions.

The added stress on my body from almost overdosing set me back. I had to wear oxygen for the rest of my hospital stay and I was unsure if I would ever be able to be without it. Thankfully, I am breathing on my own just fine.  This happened on the five year anniversary of the first date with my ex-boyfriend. When I started dating my former partner, my ex was totally destroyed. I think he thought we would end up together someday. When I told him I was talking about marriage with my former partner, he tried to win me back which just pushed me further away. I had hoped to remain friends because he was so important to me. When I was with my former partner, I would think about and miss the jokes and good times I had with my ex. So when my former partner pushed my pain buttons, the first person I called was my ex. He has always been my protector. He is super muscular (and gorgeous) and always made me feel really safe. He came to the hospital immediately and never left my side. It was never a question that he would take care of me when I went home. He promised me that he would take care of everything. He assured me that I was not alone, we were in this together. I have never known someone so loyal, empathetic, kind and trustworthy. He has done everything to take care of me. He has changed my bandages, drained blood and oozing parts of my body with a kind smile. He has made me laugh when I thought there was no laughter available to me. He’s held me as I have sobbed, soaking the front of his shirt. He has taken me to appointments, bought groceries, cooked and cleaned. He has done everything he promised me and more. He is the reason I am alive today.

I was in the hospital for three weeks and finally was able to go home.  I ended up needing home health care nurses to come to my house three times a week.  They cleaned and packed the wound on my belly with gauze and foam pads and attach a wound vac. The wound on my belly was so big you could fit a 20oz bottle of soda inside. It needed to heal from the inside out, that is why I had to have a wound vac. It was an awful experience. It took about three and a half months for the wound to heal. Every time they came to pack my wound I would take heavy duty amounts of morphine about an hour before. I could still feel the pain of the packing and sometimes would end up screaming and crying uncontrollably. I hope you never have to experience any of this but the tube down the nose and the wound vac was by far the worst parts of this experience.

While I was waiting for my wound to heal, I have still been dealing with the pain in the j pouch. It makes it hard to walk or sit. The majority of the pain is located in my right butt cheek and my tailbone. There were days were it was hard for me to walk from my couch to the bathroom. It was something that I would have to mentally prepare myself to do. The pain was so intense it would knock the wind right out of me. Tears would roll down my face and I couldn’t breathe. Finally after about a month of this I was able to see a pain management doctor. He found that they had tapered me off the pain medicine too fast and he was very empathetic to my pain. He got me set up on a way better system of medicine. For the last two weeks, my pain has been manageable with twinges here and there of the extreme stuff. I had no idea how much the pain was getting to me. It was so all encompassing. I thought I’d never get out of it. The pain management doctor also took a look at my scans and saw my broken tailbone. I was dancing on roller skates as a preteen. I remember going to the doctor at the time and them saying there was nothing that could be done. This doctor suggested a pain blocker and got me appointment right away. I went in, waited forever and then went into a room with 10 strangers. I had to lay on my stomach which was no fun and then they washed my butt. We had to wait 3mins for the soap to dry so I was in a room full of strangers face down, ass up. Whole naked ass out in the open. I have a great ass but it still was super weird. Then they stuck a bunch of huge needles in my tailbone. I screamed out in pain, they just kept going. I was miserable for the rest of the day but since having that done my average pain went from a 6-8 everyday down to a 2-4. Which is incredible.

So this brings us up to date. I’ve had reduced pain for the last two weeks. I am extremely grateful and blessed. It’s given me the time I needed to get my head right. To get myself as prepared as I can be to have major surgery tomorrow. I started this by telling you it’s my worst nightmare surgery. I am having my j pouch and rectum removed tomorrow. They will open me up on my belly in the same spot I just healed and they will go though my butt. After this is over there is no going back. My ileostomy will be permanent and I will have a Barbie butt. No hole. The process to heal that can go smoothly without too many complications. Or it can be the worst possible thing ever.  I’m hopeful that I will heal properly. I am doing all of the praying and white light work I can muster. I ask that you do the same for me. I need every good vibe I can get.

I thought about writing this out multiple times. I went back and forth because it is such a personal private thing. I really need all of the love, support and empathy I can get right now. The last time I was able to work was in November. I am not sure when I will be able to work again. It all depends on how I heal and if there are complications. Hopefully it goes smooth. I miss doing hair so much. I miss talking and being with people. I miss my friends and clients. I miss wearing makeup and feeling gorgeous. Most of all I miss my dad. I have been in too much pain to be able to visit him. I can’t sit in the car, walk the halls, and sit and talk to him. We talk on the phone a few times a day but its not the same. I miss him so much. I ended up writing this because I realized I can’t expect people to be empathetic to my situation if I don’t share the seriousness of what is happening with me. I am so incredibly thankful to everyone who has donated money to me. I literally would not be surviving without your kindness. Like a lot of people I know, I had very little savings to make it through. Just think of yourself. If an illness got you right now, leaving you unable to work, how long could you survive? How many months could you go before you couldn’t pay your bills? I am going on four months without knowing when I can start making money again. It is a scary position to be in. I am believing that it will all work out. I have to focus on my healing. Money has a way of coming and going. Things have a way of working out. If you feel like you could help me, I would so appreciate it. Click Here to Donate

Every little bit helps.

Thank you so much!

XOXO

 

 

 

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