Life as a UCer and Recovering Self-Harmer

The gastroenterologist came into my hospital room. I was flaring badly, and on a suicide watch, because I was in so much pain that I made the remark that I just wanted to die. I was left in my room for hours alone with no roommate, my door shut, curtain pulled, with cords dangling from the blinds, IV, TV, and the nurse call button. The whole situation was a joke. Without even trying, I could count at least ten different ways to kill myself.

He briefly asked me about my symptoms. Maroon stools, going only thirty times a day now, and the stomach cramps only slightly better. Vicodin was not cutting it, and I wanted my dilaudid back. Without warning, he suddenly lifted the leg of my pajama pants to take my blood pressure in my feet. I recoiled, but not before he saw it- dozens of cuts and scratches on my leg, "rette mich" (rescue me) carved into my calf. He gave me a quizzical look. "I self-injure when I'm upset or stressed." I was reddening furiously, humiliated that he discovered my secret.

He patted my cuts and I winced at the sharp sting. "Such pretty legs; what a disgrace!" he laughed, smiled and covered my leg again after taking my pulse.

Disgrace. I am a disgrace. Disgrace, disgrace, disgrace... The word repeated in my head over and over. I just smiled and laughed with him, to mask my disgrace. When he left, I cried into my pillow, more embarrassed than crapping myself in front of a stranger at coffee shop. I wanted to self-harm again, but I decided that I wouldn't allow a jerk to feed into my problem.

I started self-injuring since I was eight years old. That was the year my grandma, who was like a second mom to me, died after a courageous but hopeless fight with stomach cancer. Devastated and  feeling that I needed to be strong and "suck up" my pain, I started scratching my legs with my fingernails to ease the heartbreak. When I was ten, I was badly bullied, and graduated to bits of broken plastic and glass. By thirteen, I had found a utility knife, stolen the blades, and my problem became more serious. By age fourteen, I had landed in the hospital twice for month-long stretches. I was treated for severe depression, social anxiety, self-harm, and several suicide attempts, oppositional defiant disorder, and constant suicidal ideation. A week before my fifteenth birthday, I ended up in a residential facility, where I stayed until a month before my sweet sixteen. Before residential, I didn't think I'd live past my sixteenth birthday, and I certainly didn't think I'd live past my eighteenth. I was risky with the blade, and didn't really care if I died by accident.

I learned a lot during my time at residential. I wish I could say the same for the hospital, but a hospital is a place to go when you want to be triggered, learn tips from other self-harmers, engage in sexual activity, and deal drugs under tables. A hospital is not a safe place like it ought to be.  Residential, on the other hand, taught me it was ok to feel. It was ok to cry and worry and be sad. I didn't have to be numb all the time, or turn to the blade to just feel something, anything. They taught me other coping skills I could use, like journaling,  music, and opening up to others, a huge step for me. A wise counselor there told me that the point of treatment was to teach other, healthy coping skills. Self harm would forever be a coping skill for me, but if I could gain enough healthy coping skills, self harm did not have to be first in my tool box, and someday, it would be at the bottom of my list. I was astounded that the woman understood that my battle is life-long. The urges and thoughts will always be there. It was one of the first times someone showed compassion for a self-harmer, and I didn't know what to think.

My inflammatory bowel disease makes me hide. I am terrified of having an accident, no matter how many times I've already done so. I am terrified someone will think I am gross or ugly because of my disease. The emotional trauma of having this disease exacerbates my need to self harm. The cruelty I've met in the health field surrounding my mental illness and self harming behaviors do nothing to make me feel better. I've had doctors refuse to let me use anything except Tylenol,  the rare Vicodin, and one patch of Lipoderm a day, when a pain team recommended two patches of Lipoderm, and a heckuva a lotta Vicodin, or something stronger, like morphine. When self-harmers go in to get stitches, doctors sometimes refuse anesthetic because "don't you want to feel pain?" I've had nurses be a lot more rough than needed to be with me, simply because I self-injure. They never say it, but you know the reason they treat you roughly and don't mind hurting you is because you already hurt yourself. To them, you are disgusting, selfish and enjoy pain like some sort of demented, sadistic monster.

When I first began bleeding, I went to my family doctor several times in the span of a year long first flare. She ignored my malnourishment, anemia, white blood cell count, bathroom urgency, blood loss and fatigue.  Instead, she told me that the problem was purely psychological  and I was only having panic attacks. After a year of going to her, she finally admitted me to a psychiatric ward. It was the first of many times of medical malpractice that I've faced having both physical and mental health issues. If you've read my past posts, you'll know the rest of the story- my colon was on the verge of perforation when I got there, and my family was told that I would quickly die if that happened. Because a doctor was so focused on my mental health, my colon and my physical health were allowed to spiral downward too far, and my bowels will never be normal again. You tell me how that's ok. You tell me that it's normal to bleed out your rectum when you have a panic attack. Yes, I was having panic attacks, but only because my bowels were bleeding badly, Dr. Google said I had colon cancer, and my family doctor, whom I trusted, wasn't helping me. Duh. (I really don't like this doctor. Hopefully I can forgive her someday.)

I don't like pain. I barely feel the cuts when I make them. I don't like the looks people give me when they see my scars. I don't like doctors ignoring my guts and only "helping" my emotional pain. (Help. Ha!) The truth is, I care for myself better than any psychologist or therapist can, with the exception of exactly two people out of the twenty or so I've seen over the years. I no longer open up to doctors or therapists about what I'm facing emotionally, because all they do is treat me roughly, and ignore my ulcerative colitis, which is now a main root of my self-injury, anxiety, and depression. They fail to see that in order to treat my emotional health, they must first treat my physical health. The two go hand in hand.

If you think self-injury is disgusting, take a step back. Self-injury is harming your body. So is drinking too much, eating too much or too little, drug use, or engaging in risky sexual behaviors. By doing those things, you are harming your body. Don't attack me for cutting my skin with a blade when you rot your liver, your teeth, or have sex with everyone you come across without using protection in the name of feeling good. You are no better than I. You just can't see beyond your own problems, and attack self-harmers because what we do is taboo, and what you do is not.

Self harm is an addiction. Self-harmers experience a high from the release of endorphin's when they self-injure. It is a tough, tough addiction to break. I've been trying to recover since I was fifteen years old, and I am now approaching my twenty-first birthday. I've come a long way, but I still have work to do, and it isn't easy. It's never been easy. Everywhere I go, I can create something to hurt myself with, and it stands out to me like a sore thumb. However, I've come a long way from the girl who used to self-injure every hour. I'm now mostly recovered and have very brief relapses a couple times a year.

March 1st is Self-Injury Awareness Day. March 3rd will mark my  four year anniversary of successfully leaving residential treatment. I hope that in the next couple of years, I can be completely self-harm free. It's been thirteen years too long already. The urge will always be there, but I will overcome my addiction, because I am stronger than blade.

I Want to Be Called Mommy: A Visit to my GI

When I was first diagnosed, I remember being told that I had ten years to have children, because I would have to have my colon removed within that time, and my ovaries or tubes might become scarred from inflammation or surgery. I freaked out. I was nineteen when I was diagnosed, and that meant I had to give birth to my three dream children by the time I'd be twenty-nine. Factor in settling down, getting a decent job, and being emotionally stable enough to raise my own children, I had, oh, maybe a couple years to have babies.

I don't remember who told me this or how I heard it. I only remember being very high (dilaudid does that to you) and suddenly crashing at the news. That ruined the most fun I'd had all year.

Lately, I've been doing well. I've gotten my periods back after two years of inconsistent light cycles, or no cycles at all for six to nine month stretches at a time (and no, I've never been pregnant; this is common when your body is messed up). I can run four miles, barely, but  I can do it as long as my arthritis is under control. I can tolerate lettuce as long as I don't have it more than twice or so a week, and my neighbors no longer complain to the landlord when I have bean burritos for supper. My c-diff was effectively killed after two rounds of medications, and my doctor stood by amazed that medications work so well with my body. I feel like the Supergirl of IBD. All I need now is a cape with an image of a colon on the back.

Since I'm doing so well, I wondered if the sordid infertility information was still true, and if it ever was in the first place. During my last visit to my GI, I brought a list of questions. I knew an OB would be able to answer a lot of general questions about fertility, but in my experience  unless I speak with a gastoenterologist, no doctor really seems to know what inflammatory bowel disease is and how whatever topic I'm discussing fit with IBD. I generally know more about GI issues than any doctor I've met, except the gastroenterologists I've seen.

I love my GI. He's an older guy, super sharp, actually listens to me, looks up answers to questions he doesn't know, isn't your typical doctor-with-a-god-complex, and has given me the gentlest colonoscopies I've ever had. (If you don't have regular colonoscopies, you won't understand this!)

I brought up my concerns about needing to have children in nine years. He looked startled, and told me that was not at all true. He told me that in eight years after diagnosis, my risk for colon cancer increases, and I will need a colonoscopy every year as a preventative measure. Not even a problem, since I tend to flare twice a year and get flex sigs (kinda like a mini-colonoscopy) and colonoscopys at least 2-3 times a year. He also added that because IBD patients have so many colonoscopies, colon cancer is hardly even an issue- since we IBDers are so heavily monitored for cancerous polyps, cancer gets nipped in the bud. On the same note, I am so uncomfortable with the cancer risks that my Humira poses, he reassured me that my chances of getting t-cell lymphoma from Humira is about one in ten thousand, and of the sixty doctors in his practice, not a single one has had a case of cancer complications from Humira. (That just increased my odds!) I immediately felt better hearing this- if my risks for cancer from Humira is so low, I would be less likely to assume it will be harmful for my future children.

I am on both Humira and azathioprine for remission maintenance  and both drugs have warning labels recommending to not take the medication if your are pregnant. My GI seemed to have some strong opinions about this one, and mentioned  he's had problems with OB/GYNs in the past. OBs hate letting their patients use Humira or azathioprine while pregnant, as they believe it will pose a risk to the mother or baby. However, my doctor was very clear that going off the medications actually does more harm than good, as shown in recent studies. When I looked this up, I saw that going off these medications as a pregnant IBD patient could cause miscarriage. When the mother goes off these medications, she may flare, and in flaring, lose her baby. Miscarriage, IBD-related or not, is not just fatal for the child, but can also kill the mother.

"Humira and azothioprine are like one plus one equals three," my doctor said. I need both medications to function well. If I was taking only one or the other, my quality of life would not be good, and would make getting pregnant difficult. But with these two specific medications to suppress the immune system, my IBD can be very well managed. I want my pregnancies to be as low risk and uneventful as I can, and as long as my medications won't harm my baby, I'm OK with taking them. My ultimate goal would be to be medication-free, but since I would need surgery if I went that route, and surgery makes fertility a little more difficult, I guess I'll just have to play the hand I've been dealt.

Discussing genetics,  I asked how likely I'd be to pass on my disease. His answer  Thirty percent. However, in Dr. Sunanda Kane's book "IBD Self-Management", she states that the rate is five percent for children with only one parent with IBD, and the number jumps to thirty percent if both parents have IBD. In my family, we have a strong history of GI disorders. Multiple relatives have IBS, one has Celiac's, one nearly died of toxic megacolon, a couple have acid reflux, one has severe stomach ulcers, and my grandmother died of stomach cancer when she was in her fifties.  Given the genetics in my own family, I'm surprised no one else has been diagnosed with inflammatory bowel disease. This may be the reason I was given the thirty percent answer  but I really wish I had been awake enough to think of that. (Damn you, 7:30 AM doctor appointments ) Oh well, there is always next time.

I then asked if I would be more likely to pass on ulcerative colitis than Crohn's. Stumped, he declared that was a good question; it probably wouldn't matter, but I'd be slightly more likely to pass on ulcerative colitis. Seeing as how ulcerative colitis is the lesser of two diseases, I was pleased as punch. I'd hate to watch my child suffer and know exactly what they are going through. I would rather not know, and just remain empathetic and caring for my baby. If my child would end up with inflammatory bowel disease, symptoms
could start at any point in his or her life- including infancy. This breaks my heart. It is one thing to see the brave young men and women proudly showing their ostomy bags. It is an entirely other thing to see a small child, no more than ten years old, lift their shirt and say "I have an ostomy". The ostomy itself does not bother me. It's the knowing the pain, confusion, and humiliation that such a small, innocent person had to endure to get there. If my infant was sick, I think I'd hurt more, because they will never know a life free of pain, hospital visits, and stigma.

Even though I am not trying to become pregnant, nor will be for several years, I am already a fiercely devoted mother. I need to make sure my children are well taken care of. I need to make sure that I'm financially stable, that my health is under control, and that I am well aware of any and all added risks IBD would create for my pregnancies. When my child is born, I will be the mother who panics over every upset tummy because my first thought will be "please God, spare my child from my disease".

This is my final installment in my "I Want to be Called Mommy" series. I feels tons better about the possibility of having children, and I no longer feel as rushed. I know I will always have questions- I'm an inquisitive soul- but for now, I think I know enough.

The Road Trip from Hell

August 2011. In Minnesota, the windows fogged in the air conditioned cool of the house against the sticky heat outdoors. Temperatures sat around 110 degrees Fahrenheit, and I biked two miles to work everyday, arriving drenched in sweat. The heat of the restaurant offered no relief. I escaped to Baltimore, where my Holden lived, and the heat wave had passed.

It would be only two or three weeks before I'd wind up in ER, collapsing if I tried to stand, and with a colon on the verge of perforation. I was going 40 or more times a day, losing so much blood, water and nutrition, that I slept constantly, between bathroom runs. Being stupid and in love, I decide this was a perfect time to visit my long-distance partner and best friend.

Holden lived at his parents. No one knew I was bleeding, and no one know how ill I was. I was too embarrassed to admit the extent of my illness. I masked my pain, and only the observant noticed something was wrong.  Every time I used Holden's family bathroom, I'd go as quickly as I could, flush, wipe away blood on the seat and bowl, and take off my shirt to fan the air as much as I could. It didn't work, but I felt the need to do anything to cover up how sick I was.

One day, we went to the beach with his mother and sister. We packed sandwiches, donned bathing suits, slathered on sunscreen, and brought some extra cash for souvenirs,  ice cream, and games. We were going to have a blast. I decided that even though I wasn't feeling well, I could probably handle it; I was young and invincible.

We piled into the car like the happy family with the weird girlfriend that we were. I expected only a short drive, as Holden's family doesn't live that far from the ocean. When we rolled down the driveway, I could feel my guts oozing, but I held it tight. At the moment, his mother announced we would likely not be stopping for a restroom, because apparently there are no exits or bathroom stops in Maryland, and that the drive was three hours. We could if we had to, but only for an emergency, as we would have to take a long detour and that would add hours onto the drive.

What. The. Heck.

I panicked. I was already in excruciating pain after holding it only several minutes. My bowels threatened to relieve themselves before we got on the highway. I grit my teeth and squeezed Holden's hand. He was oblivious to my pain, but I wanted him to remain unaware. I felt selfish for needing a restroom, and worried that his sister would hate me if I stank up the car, or that his mother will be angry at me for needing to go every fifteen minutes, so I fought back tears, masked my pain, and tried not to squirm.

Two and a half hours in, I couldn't hold it any longer. The pain was unbearable. I had to fight the urge to throw myself from the moving vehicle because I wanted out of the car stat. I  ask, timidly, to pull over at the next stop. Thankfully, Holden's mother said she also had to go, and we turned off the highway.

I scurried out of the car, and into the restroom. Pleasegodpleasegodpleasegod. Don't let me have an accident, I am so close. I whipped around the corner, hurriedly locked the stall door, and didn't even bother putting toilet paper down on the seat. The restroom door opened, and I realized Holden's mother would have to use the other stall. I held it, refusing to go, even though I was already on the toilet. I couldn't let her know how ill I was. Not wanting to take long, I only relieved myself a little bit once no one was in the restroom. I felt immensely better, but once I got back in the car, the urgency is struck again.

A half an hour later, we arrived at the beach. We rented some umbrellas to protect against the noon sun, when Holden realized he forgot beach shoes. Feigning interest in taking a romantic stroll down the boardwalk to buy some shoes, I grabbed Holden and told his mother we will be back in a few hours. My ulterior motive was not to smooch under the boardwalk, but to find a toilet.

Holden was still blissfully unaware how poor I felt, and took his dandy time shopping. He looked at the whiskey glasses with humorous slogans and pointed them out to me, laughing. He mentioned a few places we could grab lunch. He whispered once or twice that he loved me. In short, he was being an amazing boyfriend, but I didn't care. I just needed a restroom. Finally, I told him "I kinda need to go". No a problem, we'll just stop at the next restroom. I stand, staring at him with my mouth slightly open, panicked, as he clearly did not understand I needed it right now. He held two pairs of beach shoes up, deciding which he liked best. I let him shop a minute longer, before I grabbed him, and hissed a command to ask the saleslady where the facilities are. Holden moseyed over to the counter, plunked a twenty and the shoes on the counter. I quickly realized he likely wouldn't ask, because my Holden forgets everything in an instant. I, red faced and ashamed, asked the clerk where I could find an outhouse. She replied that it was a quarter mile up the boardwalk.

I barely let Holden get his change. I was a middle distance runner in high school, and this is the ultimate race. Every drop of sweat, every achy muscle, every mile... it was all preparation for this moment. Even in flip flops, I'm fast. I'm not a sprinter, but I can move when I need a restroom. We whiz past everyone. I nearly ran over a few people, but I didn't care. My guts couldn't handle holding it anymore. It'd already been two hours since we stopped on the way to the beach, and I'd needed to go since. My body simply won't let me hold it again that long.

There was a line, but I was able to quickly get a stall. For the first time in my life, I didn't care if everyone could hear and smell. Fifteen minutes later, I finally left, dizzy from the loss of blood and fluid. I collapsed beside Holden, who was sitting on a bench outside the lady's room. We sat there, holding hands and dreaming shyly of a future together, testing the waters of how close we really were. Holden laughed, and I ask him what he was thinking. "We're sitting here being romantic."

"So?" I don't understand.

"We're sitting right outside a public restroom. Toilets are flushing in the background. We're daydreaming about what our children will look like."

We laughed, and I secretly wondered if the bleeding would stop like it did the times before. I wondered why I bled. I wondered, briefly, if romantic moments in front of public restrooms would be our normal. I pushed the thoughts aside. I was already humiliated I took so long in the restroom, but Holden didn't seem to care. I did, however, tell him that it is very important that the next time I say I need a restroom, it means drop everything and get me to the next restroom, no if's, and's or butt's about it.

I did make it home in one piece, but shortly after arriving in Minnesota, I ended up staying in the hospital for a month where I was diagnosed with severe ulcerative pancolitis. Holden and I have potty stories up the yin yang, which are some of our fondest shared memories, and I'm perfectly OK with that being our normal. As far as I know, Holden's sister doesn't hate me for stinking up the bathroom next to her bedroom, and his mom was extremely patient with me constantly bombarding the only toilet in the house. Oh, and the ride home from the beach was much, much easier, and I never even soiled myself that day! Yay!

Word for the wise: Choose an amazing partner with a kind family. Don't go traveling when you're flaring, and make sure you know how long road trips are before you agree to one. That stank. Also, don't hold it, and don't feel selfish. I made myself very ill doing that, and I began to spiral downhill very quickly after that day. Feeling embarrassed is not worth your health!

Yup. Can't even tell I'm sick. Boo-yah.