No Guts, No Glory

I wanted to keep this Blog-site mostly about my professional and creative exploits, however sometimes personal things happen that are so big that they impact everything about your life. I haven't blogged in quite a while and this post is about the reason why. Last summer I almost died. I no longer have a colon and live with my small intestine poking out of my abdomen, covered with a bag called an ostemy. 

Me with bag snapped on...

...Me with bag snapped off.

On July 4th, 2016 I checked into the ER after having been sick for about two and a half weeks. I had gone to my small local clinic a few times and their blood tests turned up nothing, but on the 4th, all they could say was that something was wrong. I had very little energy, but wasn't really in any kind of pain. The ER couldn't figure out anything that night so they checked me into the Hospital upstairs. And there I waited for a few days. Literally nothing happened.

The on the 8th something did happen. I can barley remember those few days in the Hospital, but in the time since memories have been triggered. I remember waking up to  my bed being moved up to ICU in a hurry, and the nurse there telling me that I was very sick. I wasn't in any pain, but felt very tired. I asked if I was going to die and the way she said "I am going to try my best not to let that happen" would have normally scared me. But I was just tired and wanted to slip back to sleep. She told me that they needed to shove a tube down my throat and I remember begging her to put me to sleep before it happened, my throat is very sensitive and I gag just watching other people eat. My family was on their way from Washington and she turned the lights out. I don't think she had to use drugs, I just slipped away on my own.  

The next thing I remember is waking up with a huge tube in my throat. My aunt was sitting next to me holding my hand. She talked very quietly to me, though I can't remember what she said. I couldn't talk back or turn my head, I just looked at her from the corner of my eyes and wished that I could sleep it off. Then it went dark.

For a long time. Longer than I realized.

I startled myself awake and gasped for attention. It was dark. My throat was sore and dry, and I wasn't that suprised since I figured I had just had a large aquarium tube in my throat. What I would learn later was that I was asleep in septic coma for about four days. Immediately a nurse came in. "I sure am glad to see you awake!" I tried asking where my husband Miguel was, but only raspy air came out. I couldn't speak. The nurse just shook her head and told me she couldn't understand. For some reason that didn't bother me and I immediately thought to myself: Aparently I can't speak, I've seen this in movies and I'm not going to be stupid like they are. 

I pantomimed holding a pencil and writing. The nurse came back with a pen and notepad. I'm so smart! I thought to myself. But only scribbles appeared on the paper. My hand and fingers were so weak that I couldn't write either. The nurse shook her head and told me to get more sleep.

I'm told that a lot happened while I was in that coma, though it wasn't until after I had left the hospital. I had heard the stories. I almost died a few times and had to be closely monitored by two nurses at once.  But what caused all this mess was my colon. A blockage caused by undiagnosed Crohn's disease had cause it to burst, flooding my body cavity with sewage. Most people die when this happens. 

On the night of the 8th they had sliced me open from sternum to pubic area, removed the now useless colon and installed an ileostomy. I was on dilaudiud and didn't realize a thing. 

I remember the moment I woke up with the notepad pretty clearly. The next week and half, however, was a blurry hulucinagenic nightmare. Scientists ran experiments on me. I was undead, attacked by wolves, held in several different space ships, tied down to a terrifying molasses-slow water ride, tied down to an uplifting molasses-slow water ride, time traveled, trapped in derelict puzzle rooms, played messed up video games, wandered through caves made of organ flesh... and more. The entire time I knew I was hallucinating but couldn't seem to be able to tell anyone. Most of the time, I just lay there feeling like I was slowly dying, trying not to let the terrifying sights get to me. Time moved slowly and sometimes reversed back on itself. A few times I pulled my feeding tube out or tried to walk out of the hospital, only to find that my legs didn't work. These bizzare experiences are too many to describe here and each worth a journal entry on their own.

Eventually the hallucinations slowed down enough that between episodes I was able to talk like a normal person to my family. We eventually figured out that the cause of these "trips" was ketamine used to knock me out for surgeries. All in all I think I had six washouts, during which time i was just taped together, and later four surgeries to sew me back together.

The last two weeks in the Hospital were much more calm. Without the Ketamine induced hallucinations my memory started retaining the previous day's events and I stopped being so confused. I only realized that my colon had been removed when I overheard a nurse updating another during a shift change. Now conscious and aware of all that had happened, sleepless nights set in. Every day was a struggle to eat enough food and I remember being so relieved when my feeding tube was finally allowed to be removed. My buddy Seth brought me fast food because the Hopital food was difficult to enjoy. He also pushed me out to the garden in a wheelchair. Every day a physical therapist came by to help me use a walker. Eventually it was two and three times a day. I also had to come to terms with the fact that the ostemy on my hip was a permanent fixture and had to learn how to take care of it. I am still coming to terms with it. 

I finally left the hopital on August 4th. I had to beg the Dr. to let me leave because I needed to sort out some of my business before it was too late. I was in the coma when I should have been working at a client's event, and another was about to happen and I needed to find a replacement. I spent the next 2 months mostly on my sofa resting and sleeping, and making visits to five different doctors and nurses as follow ups. When School started I felt strong enough to start, although in hindsight that was a bad idea and had to drop out of one of my classes. I dropped one of my jobs but the one I kept has been a blessing and I am still working through a backlog of editing to this day. 

I need to thank the surgeons that saved my life, the nurses who looked after me, and my Family and freinds that visited me in the hospital. Miguel stayed with me by my side whenever he could and I love and appreciate his care. 

After 6 months I am finally feeling like my old self. I have enough energy to walk up stairs again. Insomnia and depression occasionally come for a visit, but getting out of the house usually helps them move along.  My scar along my abdomen has healed nicely on the outside, although it does get stiff and sore along the inside. I take lots of pills to get my remaining small intestine to do the work of two now. My ostemy leaks a lot and usually gets sore and itchy.I need to pay attention to what I eat and drink so that I don't get a blockage or dehydrated. My ileostomy saved my life but I am looking forward to the possibility that I might be able to get a reversal/take-down surgery this summer, although even if that happens I will still be spending the rest of my life without a colon.