"Psychosomatic Complaint" My Butt

When I was fourteen years old, I was at one of the lowest points in my life. I was asked not to return to the small Catholic private school I had been attending because they couldn't handle a child who was as depressed as I was. I refused to go to start school again. Here I was, the girl always had her nose in a book, and knew everything there was to know about anything, aspired to be a real-life Hermione, and I was expelled, had dropped out of high school, was truant, whatever. I didn't care. My depression spun out of control, and my self injury, which I had kept hidden, had gotten so bad it was no longer a secret, and I'm an expert at keeping things hidden. I carried blades with me everywhere, but could fashion a weapon out of anything if I didn't have a blade on me.

A few days before my fifteenth birthday, I was transferred to a residential treatment facility where I stayed for eleven months.

If you've read my other blog posts, you'll know that I've had gastrointestinal issues since I was a baby. I have vivid memories of screaming in pain because I suffered constipation. I'd bleed occasionally. By seven years old, I realized I had some major hemorrhoids, but had no word for them and didn't know what they were... besides painful and huge. At age eleven, I started finding blood in my stool again. At age twelve or thirteen, I'd occasionally lose complete control of my bowels, and was so embarrassed that I never told anyone. I'd throw my underwear away so my family wouldn't know I was having accidents. It was that same school year I was in ER the first time for horrible abdominal cramping, and was told my colon was mysteriously inflamed. They said it was just gas, so they sent me home.

When I was in residential, I had very few GI symptoms. I don't recall ever having major GI issues, other than a few  stomach cramps, where I would curl up and hope people would leave me alone. Once, I vomited all over our probation officer in the middle of the night when he couldn't unlock the doors to the restroom quickly enough. Fun times. My GI symptoms were always marked in my charts as a "psychosomatic complaint" unless there was a bug going around.

A psychosomatic complaint is when your mental health manifests physical symptoms. You know that butterflies in your stomach feeling, or your heart beats faster and your palms sweat when you're nervous? Those are psychosomatic complaints. Your body is fine but your mental health begins to cause issues in your body. It's troublesome if you  need a bathroom when you get especially nervous, but your intestines aren't going to rupture, you won't need surgery, and you certainly won't need to be on immunosuppressants to control your guts. Now, was I having some psychosomatic complaints when I was in treatment? Yeah, probably. Even now, if I'm nervous, it doesn't matter if my UC is in remission or not, I'll feel a little sick. It's a very different, milder sick than inflammatory bowel disease, but it's still not pleasant.

Let me make this clear: I am absolutely livid that I wasn't even given the grace of being diagnosed with IBS when I was in the hospital as a preteen the one time, or when I started to get sick again at age eighteen. Even though it would be a wrong initial diagnosis, I would have at least eventually been referred to a gastroenterologist. (I hope.)

When I was eighteen, I had just graduated high school and moved out of my parents house to a relative's home so I could be closer to the Twin Cities, where there were better career opportunities. The bloody stools, which I had not seen since I was about thirteen years old, came back. I went to my family doctor right away. I was humiliated, because society thinks it's disgusting for people, especially women, to have "bathroom issues". Gastrointestinal issues, whether it's psychosomatic, IBS, IBD, or cancer isn't sexy and can really hurt a person's body image, especially a teen girl with poor self image to begin with.

You know what my doctor said? That I had hemorrhoids and a nervous stomach. I tried to explain to her that I wasn't wiping away a little bit of blood on my toilet paper, but was turning my toilet water bright red, that I was shitting myself a couple times a month, and that I was going to the bathroom about fifteen times a day. She very calmly told me that anxiety will make people sometimes have loose stools, and repeated that I only have hemorrhoids. She didn't even recommend seeing a GI, running tests, etc. Just listened to my symptoms, noted my long history of depression, suicide attempts, anxiety, panic attacks, and dismissed the signs of a serious, life-threatening, chronic disease as nothing more than a nervous tummy.

I continued to go back to her. I was eighteen, and didn't even think to get a second opinion. I did push for tests around my third time going in. She remarked that my white blood cells were elevated, and that a fecal occult test showed blood in my stools. She urged me not to go to a gastroenterologist, but a therapist. A therapist.

If someone is bleeding so badly that their toilet water is becoming a darker and darker shade of red every time they use the bathroom, keep crapping themselves, and give up school, which they love dearly, because they kept having accidents in class, it's probably not anxiety. How is an elevated white blood cell count caused by just anxiety? How about debilitating pain and nausea? What about joint pain so bad that I hated buttons, because it was so painful- at eighteen years old!- to button my pants?

And yet, for a year, that is what this doctor told me. I kept going back, and back again. It got so bad, that I began planning suicide for the first time in years. It wasn't the depression that was causing the thoughts. It was just that after a year, I was going to the bathroom between fifteen to forty times a day, started losing complete control over my bowels on an almost daily basis, and was so ill I had to sleep twenty hours a day. It was no life worth living. I was in agony. I visited Holden in Baltimore one last time to say goodbye to him. I didn't tell him I was visiting because I planned on killing myself when I flew back to Minnesota. I didn't tell him that I was bleeding or ill. I just tried not to cry when he grabbed my hands at dinner, and with boyish enthusiasm, told me he couldn't wait to start a life with me, marry me, and raise children together. 

When I got back to Minnesota, I tried one final time to plead with my doctor to please do something. I told her that I was bleeding straight blood with little to no actual stool, was up several times a night to use the bathroom, and during the day was going every 15-45 minutes. I told her that my abdominal area was extremely tender to the touch. I told her that I was having panic attacks because I was so ill. She gave Xanax and told me to come back in three days if I didn't feel better.

Three days passed. My symptoms worsened badly. I couldn't sleep for more than about 30-45 minutes at a time before I'd have to run to the bathroom. More than once, I dozed off on the toilet in sheer exhaustion. The Xanax did help with the panic attacks I was having, but let's remember that I was having panic attacks because I was afraid I was dying, and I really didn't want to have to kill myself. I was miserable and had my suicide plan ready to go, but I really didn't want to die. I just wanted the pain to go away, for the bleeding to stop, and to be able to sleep a full eight hours without my guts keeping me awake.

I had somehow managed to pack all my things and move into my own apartment in those three days (because what better time to move than the worst flare of my life?), and was struggling not to show anyone how much pain I was in carrying heavy boxes. I kept as straight a face as possible, but as soon as it was just me and my mom in my new apartment, I passed out on my bed and she started the routine she always did when I was sick as a kid. She forced me to drink electrolyte water or Gatorade every half hour, but I kept throwing it up within minutes of swallowing, and eventually she gave up. She tried to "feed" me Boost and Jello, but I couldn't keep that down, either. She lived an hour away from me, and could only spend a few hours a day with me. She didn't realize how horribly ill I was. But the moment the three days were up, she drove me back to the doctor.

Even though I wasn't able to sit in the exam room for more than a few minutes before I began vomiting and running to the bathroom, my doctor again insisted it was only some psychosomatic complaints and called a local psychiatric ward to have me admitted right away.

I got to the psych ward, and stumbled into my room. I collapsed on the bed, and my roommate, who seemed like a nice enough girl, began the obligatory "what is your story" conversation. Within five minutes, I was in her bathroom. I was humiliated I stank up her room. Within about twenty minutes of being on the psych ward, I fell to my knees on the tile down the hall from my room and couldn't get up, even though I struggled with what little strength I had left. Two nurses carefully lifted me and helped me to a bathroom. My vitals were all over the place. I was running a fever, I couldn't walk, my blood pressure was sky high, and I was struggling to keep my eyes open. I still couldn't stop vomiting. At that point, I began crying without tears, because the pain was unbearable and I was badly dehydrated. I couldn't hide from my disease anymore, and I certainly couldn't mask my symptoms to other people. Anyone could see that I went from being somewhat healthy-looking to a lifeless ragdoll in only a few weeks.

An hour later, I had had my first CT scan and was told my colon was badly inflamed. It was the middle of the night. I was quickly transferred to a medical unit and hooked up to goodness knows how many things. It took three different people and seven tries before they could get an IV in me. I don't remember the first few days because I was exhausted, high on pain meds, and was still trying not to show anyone how sick I was, not that I was really fooling anyone anymore.

I've gotten to the part in my diagnosis story I can't talk or write about without crying, and I certainly can't continue my story from this point. It's been three and a half years, and I still get panicky thinking about my hospital stay. I still have nightmares about it and it still brings me to tears when random memories come up. I get fidgety just hearing the name of the hospital I was in. The smell of saline and rubbing alcohol gives me flashbacks. I avoid hospitals as much as I can, even if I need ER for something not related to my UC.

I'm just as much pissed as I am traumatized. I'm so mad that my disease was blown off because I'm also a mental illness patient. I'm so mad that some nurses in a psych ward realized how sick I was instead of that idiotic family doctor (I'm very thankful for those nurses, though). I'm mad that ulcerative colitis isn't recognized as a disease that kills. As pissed as I am that I was sent to a psych ward instead of you know, a medical ward, I know that I was so naive I wouldn't have gone to ER myself, and I would have died soon- whether from suicide or UC. I could have been so much healthier had my doctor actually listened to me in the first place and not chalked my bleeding up to a psychosomatic complaint.

Ulcerative colitis is a deadly disease, and GI symptoms need to be taken seriously. Listen to someone when they say that the pain is overwhelming. Question doctors. Demand answers. Don't be as naive as I was- learn from my story. I deserved better care than that. Everyone does.