The time my GI called me a disgrace

September 2011, a hospital in the Twin Cities suburbs

I was just admitted and was escorted to my room. My grandpa and aunt were with me. My dad was still coming to the hospital from work and would arrive shortly, but for now, it was the three of us and a nurse. I had just been discharged a day ago from the hospital for a severe flare, but then returned the next morning, in worse pain than before, topped off with a terrible migraine that kept making me throw up. There was a knock at my door and a psychiatrist entered, shook my hand, and asked my grandpa and aunt to step out of the room. While the psychiatrist checked on me to make sure I was safe, my grandpa, who is rather hard of hearing and didn't hear why he was asked to step out, asked the nurse as they waited in a the hospital hall what was going on. I didn't see it myself, but my aunt reported that the nurse said "she's having some problems up here", pointed to her head, and waved her finger around in circles to indicate that I'm crazy.

The next day, a gastroenterologist I hadn't met before came up to my room and introduced himself. I was freezing, running a temp of 101F, and in terrible pain because the attending physician didn't allow me anything except Tylenol, despite my pain teams protests that I needed more than over the counter drugs. I had just started Remicade a week ago, was on steroids (among handfuls of other drugs), and was just starting to see minor improvements. My blood loss and bathroom urgency was declining. Though my UC was very slowly improving, my body image worsened each day. I had always been repulsed by my body and face before, but now... no one could reassure me that I was pretty. My face looked like pepperoni pizza from the steroids, my feet and ankles were so swollen I could barely walk, my skin hung off my bones, my belly was always distended, and I looked and felt like I hadn't slept in years. Just taking a shower and changing scrubs required a nap. (Bless my dad for painting my nails while I was admitted in a noble attempt to make me feel like a princess. And it did. I showed my sparkly pink Dad-painted nails to everyone.)

This new GI, who we'll call Dr. Joe, asked me all the questions I had been asked everyday for the past three weeks. How many times an hour am I going? How much blood is there? What shade of red is the blood? How is the pain? Do I think I can get a walk in the halls today? What have I eaten? How is my nausea and vomiting? Did you get a stool sample? Being extremely fatigued, I couldn't move fast or form words quickly enough when he pulled up the bottom of my scrubs to take my pulse though my foot, exposing my calf. Then he saw it. F***ing f***ity f***. He saw it. F***.

Cuts, up and down my calves. I couldn't help it- I felt like hell, I knew I looked like complete crap, the steroids were playing games with my head, I had no idea if I could even survive anymore pain, and I wasn't sure that people would love or like me anymore if they I knew I had disease that  made me so ugly. Self -injury was the easiest way for me to cope, and was one of the few things keeping me from completely losing it.

"What happened?"

He seriously didn't recognize the cuts as self-inflicted. He looked genuinely confused. He was from out of the country, and I guess he hadn't ever heard of self injury. Embarrassed, I told him the truth.

"What a disgrace." And he began laughing, He kept chuckling and telling me I was such a disgrace. He patted my leg and told me my leg was too pretty.

There was no one else with us. I just sat there, put my arms around my distended belly, and didn't speak. I was afraid I'd start to cry. He had already called me a disgrace and laughed at me for my self-injury. What would he call me if I started crying? I knew the "joke" the nurse had made about me being crazy. There were some other comments being thrown around by other doctors and nurses that were just as bad. To the hospital staff, it seemed like I was just a joke. A kid who self-injures, has suicidal thoughts that never seem to go away, and now shits herself. I felt awful.

I don't know if I finally did cry when he left. I can't recall exactly how my family found out. I think I told my aunt via text, but I was so embarrassed and just broken from everything else that was happening in the hospital, I think I dissociated. All I know is that I never saw that doctor again, and will never see him again.

For weeks, I called myself a disgrace. I was ashamed of myself. It was bad enough that the doctor who admitted me refused to let me take pain meds, separated me from my parents, and forced me to sign a 72 hour hold, even though I wasn't suicidal.

The other day, I came across some drawings in my journal. I never show anyone my journals, but this is such an important issue to me. I've gotten laughed at and ridiculed by doctors a few times over the years. I was told my severe bleeding was just a panic attack. So... I'll leave you with this. At the time, I couldn't write about what was happening to me in the hospital. It was too painful. So I just doodled. Somehow, I think the doodles speak more than if I had written my experiences down.

Doctor: WHAT A DISGRACE. hahahahahahahaha
Me: You're right... I'm nothing but a disgrace

Yes, that does say being high is my only relief. No, that does not mean I've ever struggled with an addiction. Pain meds were my only escape, and they made me really high.

I'm proud to say that I no longer think my body is disgusting (I think I'm pretty cute, actually) and I will never, ever sit back and take a doctor's offensive words to heart. I'm sick of being treated like this, and I will never go down without a fight. I know now that I deserved better. So does everyone.

"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.

Diabolical Behavior Therapy

Just kidding! It's actually called dialectical behavior therapy. My dad just called it that the first time he heard it and it's been a running gag between the two of us for years.

Dialectical behavior therapy was created by psychologist Marsha Linehan in the late 1980's to help people who have severe mental health problems, and hadn't had much success with other types of treatment. A wide range of problems can be helped with DBT- I've seen people with eating disorders, personality disorders, depression, anxiety, bipolar disorder, schizophrenia, and substance abuse problems all benefit from DBT. DBT teaches you to change your unhealthy patterns. For example, in a person who self-injures, DBT teaches how to find healthy self-soothing skills or healthy outlets for anger to replace the act of self-injury. DBT also helps with managing relationships, gaining and maintaining self-respect, self-advocacy, emotional regulation, mindfulness, etc. The awesome thing about DBT is that anyone, even people without a mental illness, can benefit and learn from the program.

I started self-injuring when I was in elementary school and first became suicidal while I was in middle school. By the time I turned fifteen, I had been away from home for over a year in hospitals and residential treatment. I'm turning twenty-three in a couple months and have been through twenty plus therapists, at least five psychiatrists, and several psychologists, not including all the other people I've worked with in my recovery. I'm not the trickiest mental illness patient there ever was, but I have certainly been a challenge to a lot of mental health professionals. They don't know what to do with me most of the time and I get frustrated because as badly as I want help, resources in the US are limited. One in four adults in the US has a mental illness, and in my area, there are waiting lists of three months for the first session of therapy. For people like me who need more than individual therapy twice a month and some Prozac, the situation can quickly become dire, especially since many of us are too mentally ill to handle the stress of finding help. Finding help feels like drawing straws. Only the very lucky people get what they need.

In June 2014, I started DBT again. DBT was part of the program I was in when I was in residential treatment, and while I loathed it, I also knew it worked. I decided to give it another shot when the suicidal thoughts got bad again and there was an opening for an intensive, three day a week group not far from where I live. I had been turned down by a hospital a few times between December 2013 to May 2014 when I checked in for suicidal ideation. My ER visits went something like this:

Me: I'm suicidal. I don't come in because I'm always suicidal but I don't trust myself tonight. I don't know what to do- the thoughts and urges are unbearable.

Doctor: Can you commit to safety?

Me: ... um... sure... I guess? Yeah.

Doctor: Okay, here are your discharge papers. Call a DBT group. We're not taking you unless you are in immediate danger to yourself or someone else.

I was- and am- upset the hospital would not admit me, but given the mental health crises in the country, I try not to be too upset with the doctor and hospital because I know someone else needed that bed just as badly as I did. I'm more upset with our society for causing this problem and our unwillingness to change. We have created a culture where we mourn Robin William's tragic death, but then turn around and laugh at Amanda Bynes when she has very real, very dangerous problems in full view of the public. As a whole, our society doesn't do much or care for those one in four Americans, and doesn't care about the fact that resources are not all that available. Of course that doctor had to make a call that was shitty to me. Someone else was suffering because our society failed them, too.

So a few days later, after having an adult-sized melt down on the side of a freeway because I was too overwhelmed and didn't know what to do, the DBT clinic called and I had intake scheduled later that week. Shortly after, I attended my first DBT session in six or so years. I became one of those very lucky people again, but not until I had overdosed several times and suffered a pretty major relapse in my self-injury.

There are four modules of DBT; it takes about six months to get through all four modules. It's recommended that you go through DBT two consecutive times because DBT has a language of its own, and it can be difficult to both learn the lingo and master DBT skills just going through it one time. In my group, we attend three nights a week for three hours apiece. We divide the session into 50 minute segments with ten minute breaks. In those three hours we have a DBT "class", track our mental health symptoms, and group therapy. We are expected to attend each session, and while exceptions to call out can be made for emergencies, we can't miss too many, or we run the risk of being discharged from the group. We are expected to participate in group discussion, and do our DBT homework. We are also expected to do our best.

Even though I've been through DBT before, I was a bit nervous to start again, since this time I have an IBD diagnosis. While the clinic does have to be strict about attendance to make sure clients don't bail and not take care of themselves, they've also been pretty understanding of emergencies and illness. My IBD has been pretty well managed, so I haven't needed to excuse myself from the group more than 3-4 times in a session outside of break times, but my group facilitators have never cared. They understand I need my bathroom access just like a person with another disability might need motility aids. I also found that a lot of the people in my group have a physical disability, chronic illness, or chronic pain in addition to mental health issues. While I wish I had a magical wand to wave away everyone's ailments, it was a relief to know that other people in the group understand chronic pain/illness. My group has been absolutely awesome. I was also concerned about the cost, but the clinic I go to had financial help available. If DBT is something you are interested in, make sure to get your financial help set up so you can worry about taking care of you and not worry about the cost of your care.

The first time I went through DBT in high school, I went from being a girl who could not go more than an hour without hurting herself to a girl who could go weeks or months before the urges would become too much. It's not a magic cure, and you only gain what you put into it. It is a very, very tough program. But if you need DBT and you want to be well, it works. I can acknowledge it might not be a fit for everyone as it is a huge time commitment and is very intense, but I strongly feel everyone could benefit from learning at least some of these skills since these are skills people use every day without even realizing they are part of DBT. Lets face it, none of us are perfect when it comes to effectively managing mental health. Not even people without a mental illness are perfect at taking care of themselves all the time. There is always room to improve on yourself, and become the best, healthiest person you can be.

I did go through DBT once, but life happened. I was diagnosed with a chronic illness. I went through some bad things in my personal life. My family has been battling it's demons and that's been hard on all of us. It's no wonder I needed to go back to DBT to brush up on my skills! The important thing is I recognized I needed intensive help, reached out to someone. Even if the hospital didn't admit me those couple times, I still had people rooting for me. Someone helped me schedule DBT intake. My aunt listened to my angry rants when I was in a bad place. My dad came over to and spent a few nights at my place when the hospital wouldn't admit me just so he could protect me in case I did harm myself. I know I might need DBT again in the future, and I know it doesn't mean I've failed in my recovery. It just means that life is hard, and I need help managing it when the going gets tough, like how I need extra help managing my IBD when I flare. There's nothing wrong with that.