Vomit: My Life with Chronic Intestinal Pseudo Obstruction
This year has been hell. Hell doesn’t even seem a word ugly enough to describe what I am talking about but I can’t think of one better right now.
I feel like I’ve been separated even from the people that are supposed to be “my community”; whatever that is. I feel like very few can relate to the life that I know.
I’ve lost myself twice. That’s what people with severe chronic illnesses do. They grieve the person they once were. Well I’ve done that before. I did it when I lost a whole lot long ago. I accepted it. I accepted who I was when my health got worse. Different from before. Not a dancer. Not a teacher. Not a full time employee. Blah. Blah.
Blah.
But I had to go through it again. Recently. I had to come to terms with progressive disease.
Something that gets worse over time.
I decline.
I decline I decline.
I lost even more.
I became a shell of a person with hollow inside.
You can look into a person’s eyes and their eyes seem to tell their truth. I felt like even behind my eyes there was emptiness. That if people looked me in the eye they would see that I had nothing left.
I sat in a waiting room this year at a place that was not a doctors office. I sat there underweight, in my pajamas, with a feeding tube visible on my face; I hadn’t showered in days.
I smelled.
I sat there with a plastic container on my lap so I could vomit into it. I’m sure the people there thought I was some kind of junkie. I sat there until my pain and nausea became too much to bear and then had to make my boyfriend wait in my spot for me so that I could go to the car and lay down. The pain and nausea that comes of an 8.5cm small intestine and dilated stomach. I laid down in the fetal position in the front seat until my boyfriend came to the car to tell me they called my name. I had to go through that appointment with a feeding tube on my face knowing that everyone I passed was wondering why I had it. Once it was done and we got back to the car I did vomit in that plastic container. My underweight, dirty body, bent over to puke.
A large plastic bowl that I borrowed from my friend’s cupboard before we left the house. Her bowl that was now full of vomit that I didn’t know what to do with so I left it in the parking lot. Disgusting.
You can look into a person’s eyes and their eyes seem to tell their truth. I felt like even behind my eyes there was emptiness. That if people looked me in the eye they would see that I had nothing left.
There’s a lot of shame that goes into that. Leaving it there.
I left a big plastic bowl of vomit in a parking lot. What a life. But that is my life. The part of my life that doesn’t get shared on Instagram or in the posts on this website. It’s just my real, disgusting, difficult day-to-day.
Sadly that bowl of puke wasn’t the lowest point of my year and not near as difficult of a day as most of the days I’ve had.
Progressive. I’m still trying to come to terms with that. I accepted Crohn’s disease long ago but I’ve never been able to accept my other disease. I can’t accept Chronic Intestinal Pseudo Obstruction. I refuse. I don’t want to accept it because if I do then it makes it real. I’ve had it for a long time now (possibly my whole life) and certainly things kept getting worse and worse each passing year but within the last three years I’ve been on a downward spiral. Especially in the last year and a half.
I have only cried in a doctors appointment once in my entire life and that was this year. It was after my doctor asked the simple yet very complicated question “how have you been doing?” I am strong, I like to put on a brave face, I use humor and joke around, but this disease has stolen that from me too.
All the guilt. If I let myself think about all the things I feel guilty about i’ll ruin myself. Guilt for not being able to keep up with housework. Guilt for not being well so intimacy gets put on hold. Guilt that my body and health is so fucked up that I might not be able to give my boyfriend children that we created together. Guilt that I’ve been a bad friend and don’t reach out like I should or even respond to the attempts of others to say hello. Guilt that I have been more of a burden than a help.
Guilt this.
Guilt that.
I began writing this post a couple nights ago and I’m finishing it now. I almost wasn’t going to post this because it exposes too much. I might delete it later. When I was in the midst of writing this Dan came into our room to come to bed so I closed my computer. I then spent the next hour talking to him in extent and detail about what to do with my belongings and my dead body when I die. Tears streamed down my face but I don’t think he saw because I was facing away and the room was dark.
There’s a lot of shame that goes into that. Leaving it there. I left a big plastic bowl of vomit in a parking lot. What a life.
He is wonderful for just wrapping his arms around me and listening and telling me that he’s going to die first in an explosion when we are old and then I’m going to die right after.
Death is something I think of often because I have come so close to it so many times. I get scared when I see radiologists and surgeons get scared about me. A radiologist took an x-ray last year and freaked out, stopped the test, and wanted to call my GI to make sure she could proceed because my intestine was so dilated. This year an interventional radiologist put me on a table after I was given Versed, right before a simple GJ tube placement surgery. He took an x-ray of my abdomen and immediately decided he could not do it safely because of how dilated my stomach and bowel is so my surgery was postponed. That after going through several people poking me and finally getting an IV in my foot. Now I have to go see a surgeon because it’s too dangerous for interventional radiology.
A few months ago I had an interventional radiologist hover over me as I laid on the fleuroscopy table crying. She was so sorry but my stomach was way too dilated and therefore the NJ tube had to be pushed in a lot further than most so I only had a few inches sticking out of my nose like an elephant trunk. It was too short to be able to tuck behind my ear and I was supposed to go through life like that just to receive nutrition. All because of how dilated I am. That was my 4th tube that week. They kept kinking… we all watched it happen under fleuroscopy which is how we figured out how to place it in a spot that wouldn’t kink.
When all these things happen I am scared. Scared my intestine is one centimeter away from perforation. Scared about so many other things, too.
But out of the ugly things in this life I have been gifted some beautiful things this year.
I have witnessed the love of a man who somehow managed to drive 5 hours to another State to be by my side during hospitalizations and procedures so I didn’t have to do it alone. Then I watched him drive about 2 hours back and forth from the hospital to school when I started going to the hospital in Illinois. I watched him miss days of school and study for exams by my hospital bed. He did all of this and somehow managed to get the highest grades in his classes. I witnessed something beautiful in the way he took care of me but it also rips me apart that we had to endure all this. His love is powerful and I hope that I don’t wear it out. I don’t think I can live without it now that I have it.
I have made three incredible friends this year. They came into my life right when I needed them most. From Instagram of all places! I seriously
don’t know what I’d do without them.
I have a great doctor who has shown me so much kindness, compassion, and trust. He has given me back some of the quality of life that I lost and I am so thankful for that. I am even more thankful that he listens. He really hears me, you know? If he doesn’t he’s really good at faking it and that’s OK too. haha
I’ve had some fun this year, too. I had periods of time when I got to forget about it all, even if for a short time.
For the first time in about 2 years I feel stable. At least for the time being. I wish I could just sit in that sweet spot but I’m always waiting for the other shoe to drop.
TPN has helped me gain weight and with that I have more energy so walking down the hallway doesn’t seem like running a marathon anymore.
I’ve stopped vomiting daily.
Nausea is still a struggle but now I get breaks from it.
My pain is still a huge issue but we are working on it and I’ve seen improvements.
I’m still mostly a prisoner to my bed because of CIPO but I have had some good (for me) days. In this life of mine I make choices like do I shower today and use that energy on getting clean or do I just not shower again so I can do something else.
Maybe I’ll never have to leave a bowl of my vomit alone in a bowl in a parking lot ever again.
Is this as good as it gets?
And this. All of this is my verbal vomit.
Sara
