2009: Hitting Bottom Part 1

The surgery I had in September of 2009 was the biggest operation I've had to date. After more weight loss, nausea, and general malaise my doctors decided that surgery was my best option. I had excessive scar tissue in my small intestine after multiple episodes of Crohn's flare ups in the same spot. (I had an obstruction a couple years earlier in my small intestine that left me in the hospital for a week, but doctors decided that surgery wasn't needed at the time. But more on that later.) I remember my current GI doctor and surgeon saying, "I don't know why you didn't have this done years ago."
Let me preface this by saying that I am convinced that environmental factors contribute to disease. I was feeling probably the best I had felt in a long time shortly before the worst. My friend passed away in a car accident in December of 2008 and I had never been so close to such a tragedy. When people grieve a loss, I think it's generally hard to feel "good". And so during this time, my health nose-dived. I think a combination of grief, depression, anxiety, and withdrawal all contributed to why my disease so swiftly returned full steam.
During this time, my doctor ordered some tests to see what was going on inside of me. One of the tests required that (because the disease is most active in a place that can't be easily reached by Colonoscopy scope or Endoscopy scope) a long tube was put in my nose and down my throat--yes again--and to pump up my stomach with a huge bag of liquid that could be seen on an X-Ray monitor. I told my doctor that I just couldn't do the NG thing again, and he reassured me that they would knock me out for that part. But did that happen? Not without a fight it didn't.
I got into the room and asked the technician if I was going to get anesthesia like I was expecting. He said, "No you don't need it." To which I responded with an insane amount of crying and shaking and repeatedly telling him that my GI doc said that I could be knocked out for this. He kept fighting me and then a sweet woman came in and advocated for me. He was not happy I could tell. So to humor me, he gave me this "numbing agent" that looked like WD-40 in a can and sprayed the aerosol spray up my nose before the tube was to go in. It stung and made my eyes water. It did numb the inside of my nose, but he did it way too soon. By the time the tube was supposed to go in, the numbness wore off and he did it again. Ugh. So I laid on the X-Ray table with a numb nose and cried in hysterics. I cried because I felt betrayed. I cried because I was scared. I cried because I didn't get directions to the hospital and got there late in a blizzard. And I cried because it had barely been a month since I lost a friend that I had just started to get to know and didn't know how to deal with it all. Eventually, they bargained that they would give me an IV to sedate me but that I'd still be awake because I had to do things that required awareness and cooperation, like swallow the damn tube and let them know if my stomach was so full that I was about to vomit. Great. My two least favorite things in the world coming together in one mega-awful situation. So I cooperated, still fully aware. I swallowed the tube in the terribly familiar way, and went in and out of consciousness for a while. At one point I woke up feeling the urgency to vomit and alerted the nurse and she cranked up some anti-nausea medication in my IV and it somehow made the feeling disappear. (If only I had access to that in real life.) So the procedure eventually ended and it was time for the dreaded removal of the tube. The guy ripped the thing out of my face so hard that my nose bled for a few hours afterward. From what I can remember of this horrible moment, there was some kind of balloon around the tube to keep it in place once it was in me that had never been deflated. I decided being unconscious for the rest of that day would be best.

Doin' Alright

Not much has changed in the last few days. I have been very happy because I got a full time position at the day care I've been working at (instead of just temping there) so generally spirits have been high in that respect. But there are still times when I allow my self-esteem to get in the way of my positive attitude. For example, a girl in my current preschool class said, "You are sooo skinny!" to me a few times the other day and told me I needed to gain some weight. Which, coming from a four-year-old shouldn't bother me I know, but it was the weirdest thing. I immediately felt weaker after she said that. I felt shaken and like I hadn't eaten for days even though I just had breakfast an hour before. It was a strange stumbling point for me. I began thinking to myself, She's never said that before, maybe I look skinnier than usual. Maybe I've given myself too much freedom with my eating choices. Maybe I've lost just enough so that I look like Skeletor and I need to force myself to eat more again. I don't think it matters whether you're four or 104, words hurt no matter what mouths they come from. And you know what they say, kids are brutally honest.
Since then, I've become hyper-sensitive to people looking at me up and down on the subway and then hastily readjusting their gaze when I notice. They must think I have a problem. I listen to see if they are making judgmental remarks about me to their friends or partners, which is, I think, kind of self-absorbed of me to think that strangers are always talking about me; but if it is happening, I'd rather know what is being talked about (or not talked about) than imagine all the horrible things that could be said.
But there is much more to the world than weight and appearance and I've been trying to remember that. Plus, I'm really excited about the new job and all the positive feedback I've been given at work lately, and I know that's way more worthy of my attention. Also, I haven't been nearly as obsessive about germs as I usually am, which I mark as a step in the right direction. Kids are putting their hands all over my face and sneezing all over me and I'm not even concerned. I'm not sure where my brain shifted, but instead of incessantly worrying about getting sick and avoiding situations because of it, I've kind of embraced them. My thought is, What's the worst that can happen? You get sick, you're sick for a few days, and then you get better and appreciate wellness that much more. Big deal. I think the tipping point was when a kid barfed in my class last week and I looked at it face-to-puke. Sure it's gross, I thought, but really? I've spent the last 19 years of my life scared-shitless of this? I even offered to clean it up (slightly begrudgingly) but was thankfully off the hook. I don't even know how you'd go about cleaning up puke. Paper towels and bleach I guess. Anyway, so finally after years and years, vomiting is starting to lose some of its evil mysticism that I've held so dear. That's progress I'd say.

Faltering

So the past few days have been pretty good ones, but I can still see my old patterns creeping in again. After visiting my doctor and getting a clean bill of health, I started to let myself off the hook. I saw that I had gained three pounds, I got the verbal "okay" from my doctor to stop obsessing over my weight because I feel healthy, and I've been feeling well. So naturally, I let myself slip a little bit. I haven't put really any pressure on myself to maintain a high-calorie diet. (I mean, I did for a few days, but I know I have yo-yo-ing tendencies.) Generally, I feel like I've given myself a little wiggle room, I slight cushion of weight gain, and then I say, to myself, Well, pressure's off now, Brit! And then I give myself permission to not eat a big breakfast so I can sleep in a little later, or not bring a lunch to work and buy something less high calorie (but tastier) at a sandwich shop or something, and then do something stupid like eat cereal and a cupcake for dinner. And then I lose. I always figure that I won't be able to notice any changes in my body if I skimp a few days, but I usually can. Three pounds seems to make a lot of difference on a skinny body. Today I noticed the bones of my shoulder blades protruding out of my tank top while walking past a dark glass window downtown. Bam. Wake up call. Better stop dickin' around.
I really need to find balance more than anything. Balance between cutting myself some slack and pushing to improve my health.

Before and After

August 30th, 4:05pm

I am sitting in the waiting room of my Gastroenterologist's office, and my heart is racing. I feel sick to my stomach and it is just a routine check up. I wonder if this will ever get easier. I felt good all morning--played some music, read a bit, relaxed and thought to myself, "Huh! I've finally shaken my pre-appointment jitters!" But 2:oo rolled around and so began my anxiety. I feel nauseous at the thought of being weighed despite my hefty food intake today. (I tried to eat as much as I could stomach and I drank a ton of water before I got here. I know it's kind of cheating, but...) I can't even explain the reasoning. I'm really not too worried about what I'm going to say about my health--maybe it's just an environmental reaction. I've had some uncomfortable things come out of these routine visits in the past, maybe I'm just afraid of getting burned again. I need a counselor I think.

Ok, so today is September 5th. The doctor's appointment was completely fine. They said I was a highly uncommon Crohn's patient in that I'm not on any medication, my last blood test was pretty much perfect, my energy is good, and I'm not having any real active symptoms. It's just that pesky weight. My doctor said that he hoped my weight would be a little better by this appointment (it was the same as last time--98lbs). But this time he said something that may have changed the way I will think about my next visit/myself in general. He said, "If you're healthy and your energy is good, the weight doesn't really matter so much. It would be nice to have a bit of a cushion, but as long as you're feeling well, it's not that big of a deal." That was such a relief to hear. He still gave me the name of a dietitian, because I definitely would like to have some "cushion" as well, but I feel like the way I'm going to get to that point is going to be better now in a way. Instead of putting all kinds of negative pressure on myself to gain weight or else (what the "or else" is, I'm not entirely sure) I feel like my starting place is not a bad place. If I have a day where I haven't eaten as much as I would like to, I haven't been so hard on myself, because I can recognize that everyone probably has days like that. Sometimes life gets busy and sometimes you can't plan every meal exactly the way you would like. In short, I feel like I can be more positive during the times when I've eaten enough and cut myself some slack when I haven't. I buy into positive energy kind of stuff, so hopefully an improved attitude towards myself and my weight will help me in the long run. :)

Whoops, it's been a while--update

I just realized it's been a long time since I posted anything here, so here goes.

The past week or so has had a few ups and downs. There have been days that I've felt crappy about myself and other days where I don't care at all what people say or think. It's kind of like a manic state of self-esteem. I haven't "measured" my arms much at all (except for a couple times today, and then thought to myself, knock it off, you're fine). I haven't been consistent about tracking my food intake or doing any of the weight training, and for that I am disappointed in myself a little bit. I always get so psyched up about stuff like that only to let my enthusiasm deflate into passivity. There ya have it, my second epiphany: whenever I get excited about a wellness routine, I usually forget about it within a week and feel awful about it. I wonder to myself, why can't I just commit to this? I know it's good for me. But old habits die hard I suppose. Maybe I'll start again today. We'll see.

Despite all that though, I have been having more days where I feel okay about myself. I have felt unapologetic for my appearance, and really have believed that there's nothing wrong with it. I know I'm thin, but every body is different (that's what I tell my preschoolers anyway when they point out my size). However, despite all the better feelings, I am still anxious for a GI doctor's appointment that's coming up in ten days. I am a little worried because my weight is either the same or lower than it was a few months ago. And even though I'm feeling good, and my energy is pretty high right now, I am still nervous that the low number on the scale will override any other good news. It usually goes this way:

Doctor: Well everything looks pretty normal. Your blood tests all came back good, your energy is up, but there's still the issue of the weight. What do you think is the problem?

Me: Um, I don't know. Sometimes I have a good appetite and sometimes I don't. It seems like even when I do consistently eat a lot of calories, my weight either doesn't change, or I feel gross for a few days and lose any progress that I've made. It takes me two weeks to gain five pounds and then I can lose it in like a day and half.

Doctor: What do you think we should do about it?

Me: Maybe if I had a set schedule it would help. Maybe if I planned out meals and had regular lunch times, things would improve.

[In reality, I do kind of have a schedule, but only a couple days a week. I am just sick of everything that I'm used to eating, because I've gotten bored with it; now have no idea what to eat because everything seems nauseating to me.]

Maybe this time, I'll explain to him more that I don't think it's so much a problem with my digestive tract and more with a possibly disordered way of thinking about my body and food. I think if I could see a nutritionist or a counselor it might help more than taking some form of medication at this point.

Long story short, I think that I feel bound to this idea of needing to gain weight partially because I have to answer to doctors who have been closely tracking my disease for seventeen years. I always feels like I've failed when I go in for a visit and without any progress to show for it. It's like I can't feel good about my body, because I know a doctor is going to say that where I am now is not good enough according to some bell curve chart that shows what's normal and what's not. That I'm not at a healthy place within myself, despite feeling like I am. It's like being called in to the Principal's office when you know you've done something wrong and you might be punished. In my case punishment may include some further testing, medication, therapy, or surgery. But hopefully it won't be so bad this time.

One of Many Tests: Age: 8/9

Every time I went to Children's Hospital I was scared to death. On more than one occasion my routine check ups gave way to invasive, though necessary testing, often on the same day. Ah, if only stomach and intestines were as easily accessible as say, knees or teeth. Instead they're smack dab in the middle of your body with only two natural ways of getting in. Blech.

I think my earliest memory of "test terror" was when I was first being diagnosed with Crohn's--somewhere between 3rd and 4th grade. I was scheduled to have my GI tract checked out and I was going to be knocked out for it--this is as much as I knew. I didn't know the details of what was to happen, I guess I didn't care too much as long as I was going to be asleep. Being a child, I didn't know what was going on, or what questions to ask. I think my parents felt like this in a way too. I'm sure they were scared about all the mysteries that were going on inside my body especially before diagnosis; they also didn't really know the details of what was to come either. It was new to all of us.

I remember bits and pieces of my first Colonoscopy. I lay nervously on the gurney as they prepped me for an IV. I cringed at the prick of the needle. (Doctors have always had a very tough time finding my veins since I was little. They are small and really don't stick out at all. Sometimes it takes three or four tries just to draw blood from me even as an adult. Still makes me pretty woozy.) Once the IV was in, they gave me medicine to relax. Soon I was wheeled through through many sets of double doors and into the halls where other patients lay in their hospital beds, newly bandaged from surgeries and doped up into a calm stupor. My final stop was a science fiction looking exam room with all kinds of monitors and gadgets rigged up to hospital trees. They gave me a gas mask and asked me to count backwards from ten. They said that people usually don't make it past seven. I worried what would happen if I made it down to two. Soon there would be no numbers left besides negatives, would they start anyway? But soon, as to be expected, the room started to become foggy and the anesthesiologist who was looking down at me from over the side of my hospital bed started to disappear until I was asleep.

Now, I don't know how long they were working on me by this point, but in the middle of the procedure, I woke up. I woke up while under anesthesia. Holy crap. I was confused and in pain and started screaming. I vaguely remember the doctors scrambling around in their shower caps and scrubs and saying something like, "give her some more!" (I found out later that I was one of the youngest, if not the youngest person at that hospital to get a Colonoscopy and that they weren't sure how much anesthesia was required for someone so little.) I fell asleep quickly after that incident but I never forgot it like you're supposed to.

Reflection

This past week has gone pretty well. I've been feeling generally healthy and have tried not to let myself fall into negative thinking (despite one of my preschoolers asking me why my legs are so little a couple times this week). I had a small epiphany (an epiphany that I have every couple months or so, but typically let fall by the wayside) that I am focused far too much on fear and disease. My thinking patterns are so wrought with criticism and hopelessness, no wonder why I never feel 100 percent. I'd like to start looking more holistically at myself and include different types of alternative medicine to my daily life. For example, I recently read a book about Feng Shui and figured it couldn't hurt to apply a lot of that to our apartment--couldn't hurt right? (Side note: did you know that the center of every room represents its inhabitants' health? There was a lot of crumbs and clutter in the center of our rooms, time to do away with that if I'm gonna be gung ho about this.) Also, meditating is one band wagon I jump on from time-to-time, but I always end up forgetting about it or getting too frustrated or distracted while doing it to commit. But I've been doing it this week and have noticed that it has kept me more mindful of my surroundings and goings on inside my body. So anyways, for the past week I decided instead of wallowing, that I would try to be more proactive about my health and general wellness. In addition to the aforementioned activities, I've also been keeping track of everything that I eat, not just to have a better idea of calorie intake, but also to identify "trigger foods" (or foods that initiate symptoms). So far, that's been helpful. I think a lot of the time I believe I'm eating a lot and should be gaining weight--and while this is true on many days there are also days when I don't eat that much for a wide variety of reasons. It also makes me feel good to be more conscious of myself in a positive light--like I'm doing something good for my body. I've also started doing upper body exercising with small weights, and I've already started to notice some changes in myself. BUT, here's the psychological problem I have with this: I wonder if doing the workouts is a kind of step back in progress. While feeling stronger and more energized is definitely part of why I want to eat better and exercise, I worry a little that it is another way that I'm trying to hide my supposed inadequacies. I'm trying to change something about myself (like my small arms and bony shoulders) because looking at them the way they are makes me upset. If I am really working on self-esteem here, shouldn't I first accept in myself what I don't like before I try to change it? I mean, even though I don't see a huge difference, I already feel more confident in myself after just doing the work outs for a week. What I struggle with though is the fact that I'm putting a lot of energy into achieving a look that I consider "normal" instead of accepting that there is no true "normal." There are ideals, but those are impossible for most women to live up to. However, taking these steps is important to my overall health as well. I guess my base question for myself is: am I trying to eat better and exercise for the wrong reasons?

"What's under your shirt?"

I'm not sure if people knew what kind of surgery I had after my G-Tube put in. I remember my teacher making a little announcement to the class explaining that I would be leaving class a little early every day and that someone would need to carry my books for me--my friend Delaine offered to do that :) I didn't mind that so much. But being in middle school definitely had it's own set of hurdles.

It was after gym class and I had changed back into my clothes. I tried to be careful not to let people see my belly in the locker room, but one day shortly after approaching the bleachers, a boy that I didn't even know that well asked if he could see what was under my shirt. I, of course, said "NO!" to which he responded, "C'mon! Just let me see! Does it really look like a beach ball plug??" We battled like this for a while and a small crowd formed around me, but I never showed him. It made me feel like a real side show act. "Come one, come all! Live from the Epping Gymnasium, Brittany the Human Beach Ball!" Yeah. No way was I going to show him that.

Somehow in college I got over all that. I would show people I had just met my tube without any shame or hesitation. I don't know what came over me. College is a weird time. My freshman year, a girl I had known for a few months casually said, "Hey, what's that under your shirt?" Instead of cowering I said, "It's a tube," and promptly showed it to her. She just looked fascinated, not really freaked out. I spun it like it was more badass piercing than a belly button ring because it goes right through me instead of in and out of a small patch of skin. There was one guy that was convinced that I had a belly button ring, and when I kept telling him that I didn't he'd say, "Oh yes you do! I see it!" So of course I had no problem proving him wrong. I think it's hard trying to hide something like that all the time. For one thing, having a secret is exhausting and it's something I was conscious of almost all the time. Also, I think it's tricky to be a girl with a G-Tube in terms of clothing. Either you wear something that looks baggy and unflattering to conceal the bump, or you could wear something that normally would look good, but the bump is center stage. And trying to find a bathing suit that hid it well enough? Very difficult. I was mostly in tankinis if I went swimming at all. Dressing was a Catch-22 for a long time.

Somewhere after graduation I regained the shameful feelings I was so used to growing up. Maybe it was because I was out of that comfortable environment where I felt strong and confident. You know, a big fish small pond kind of thing. Back in the real world where the bubble is burst is a whole different place. A place without free counseling, body image workshops, and assertiveness training to get you through all the crap that people dump on you.

A Crack in Self-Esteem: July 21-Present

There are days when I feel physically and emotionally healthy, but sometimes my mind can't help but get the better of me. Since writing these blog posts, I feel like I can air out some of my racing, self-deprecating thoughts and then forget about them once I've clicked the "Publish" button. Blogging, so far, has been an effective way to be honest about myself without feeling the need to make excuses for my appearance or shamefully slink into the background. But then there are days when my old patterns take over. Hopefully this post will help to absolve my week of obsessive negative thinking.

Exactly a week ago today I had a doctor's appointment. I was a little nervous, but I had generally calmed my mind down enough so that my heart wasn't pounding like crazy in the waiting room. When they weighed me, the scale read "95"--with my clothes on. I couldn't believe what I was seeing. I thought I at least weighed 100--that's what I tell people anyway--so to see that number was gut-wrenching. I haven't been able to shake the thought of it since. I knew I lost a little bit of weight after a recent Crohn's episode, but not that much. (I don't own a scale for obvious reasons.) When I look in the mirror now all I see is a hardness to my body; bony with a lot of gaps where flesh should be filling me out. I didn't notice that as much before my weigh in. I've been measuring my forearms like a nut job to see if I've gotten any smaller. I don't whip out measuring tape or anything; I loop my thumb and middle finger around the widest part of my forearm and if my fingers can touch, I know I'm in trouble. If there's a space where my fingers don't touch, I'm slightly reassured that I haven't lost too much. Generally speaking, the bigger the space the better I feel. I often try to keep my upper arms flat against my sides to maximize whatever fat is there, because I feel like that will make my arms appear more normal and less scrawny.

Last weekend I caught a glimpse of my legs in a pair of shorts in a store mirror and was instantly embarrassed that I had been walking around like that all day. It makes me wish it was fall so I can't start layering on clothes again. It's strange how seeing a number on the scale can completely change your perception of yourself. I was feeling better about myself, unapologetic for how I looked, but after seeing that number I felt like crawling under a rock or something. I wonder if the way I see my body in the mirror is skewed in the same way anorexic people are said to see themselves, only reversed. When I see my body, I think to myself, Oh my god. You're disappearing. I know I'm not going to totally "vanish" or anything, but to notice that I'm shrinking or that some of the fat or muscle I used to have is gone, is pretty unnerving.

G-Tube: Age 12

After many attempts at using the NG Tube, my parents and I decided that getting a Gastric Tube (or G-Tube) implanted would be my next best shot. I had no idea what it would look like. I assumed that a small hole would be drilled into my stomach and a skin flap would be left to cover the hole when I wasn't using the feeding pump. When I woke up after my surgery, the site was covered with layers of gauze and tape so I had no idea what was going on under there for a day or two. I was kind of afraid to look, but when they took off all the bandages, I was very surprised with what I saw; not because it was bad, but because I had never seen anything like it before. The G-Tube looked like a beach ball plug on the surface. It stuck out about 3/4 of an inch off of my belly and the rest of the tube was under the skin and in though a hole to my stomach. Even though it wasn't the most attractive thing, I was kind of glad it wasn't just a gaping hole in my body that bile could seep out of all the time.

I don't remember much of what happened right before the surgery, I just remember that I was in a lot of discomfort right afterwards. I lay in my crisp hospital bed, propped up on a few pillows to sit up straight. Every time I moved, it felt like an air bubble ripped through my guts. It's kind of hard to describe. It hurt so much just to sit or stand. I never realized that stomach muscles are used to do so many simple things, like turning a door knob or tying shoelaces. When I was on my way home, I tried to relax by laying down in the back seat of my dad's truck, but Massachusetts's highways are not really noted for easy riding. We went over more speed bumps and grooved pavement than I care to remember.

While having a G-Tube did help me put on some weight (or at least stabilize it), it was not without its complications. There were nights when I was especially restless in bed--tossing and turning all the time. Normally this would be okay, but I was attached to a long tube and with every turn it would wrap itself around my body tighter and tighter. Some nights I woke up with the cord wrapped two or three times around my neck. That was always a little scary--like being gently strangled. Sometimes the two tubes would detach from each other and leak sticky, gross smelling formula all over myself and my bedsheets while I slept. It was a very rude awakening, because I would have to figure out what was going on in a drowsy stupor, get up, stop the machine, unplug, take the sheets off the bed, rinse off, get new sheets and start over.

I think the worst was when the tube would unexpectedly come out. The first time it happened, it was because of the above scenario. I was sleeping and the cords became wrapped around me so tight that it pulled the tube right out of my body. It's a very surreal moment to see something that is supposed to be in your body suddenly out of your body, even if it hasn't always been there. The second time it happened was when I was at school. I was sitting at my desk in English class and preparing to switch periods to History. I was gathering up my textbooks on my desk and accidentally let one slip down the front of my torso, and then POP! The downward force of the book caught on the tube and it came right out. At first I was confused. I immediately rushed a hand to stomach to check for the tube, but it was gone. My stomach felt flat, it was foreign not to feel the bump I was used to. Instead I felt the bump at the bottom of my black shirt, almost on my lap. I sat there, slightly panicked, not sure what to do. I think I waited for the bell to ring and then rushed to the bathroom, still holding the tube through my shirt. When I got there, I locked myself in a stall and tried to figure out if I should put it back in myself. After a minute, I decided I had no other choice, because the hole would start to close up after two hours. (That's what the doctors told me last time. Apparently the stomach heals itself pretty quickly.) The tube part of the G-Tube (or the part that goes inside and looks like a short straw) has a small balloon around the bottom that inflates once it's in your belly to keep it from coming out. In this case, the balloon was broken because my stomach acid had eaten away at it over time. Getting the balloon section in was always the hardest part, because it is a little wider than the rest of the tube and the incision it's going into. So I started pushing it in. I pushed and it resisted, over and over. It would go in a little bit and then feel stuck, not budging any further. But I knew I had to get it all the way in before the bell rang again. So I mustered up everything I could and forced it in. My stomach gulped it up. After that, the rest of the tube went in pretty smoothly and I went to class like nothing had happened.

But somehow, even worse than that, was the time it got ripped out by someone's backpack. I still to this day have no idea how this could have physically happened. But I was walking down the hall (switching classes again) and one of my classmates must have turned quickly with her large backpack on and it swatted my stomach. I felt that classic yank sensation that I was by now getting used to and realized that the damn thing was out again. I couldn't figure out where it was. I scrambled looking all over the ground for it to no avail. Then I raised my eyes up and saw it dangling from the girl's netting on her bag. My eyes widened with shock. There she was, walking down the hall casually with my tube hanging off of her, completely unsuspecting. I was so worried that someone would see and ask her what the hell that was. This very bizarre-looking medical accessory she was now donning. I tried to stealthily snatch at it without being seen. I don't think anyone really noticed what I was doing, thank God. After swatting at it, my tube ended up landing on the dirty school linoleum that had been graced by hundreds of less than hygienic sneakers that day. I quickly grasped it from the floor and brought it to the bathroom. All I could really do was rinse it off a little in the sink before putting it in. Not a very sanitary medical procedure, I must say. But I put it back in like I'd done before, though slightly more grossed out this time. At least nobody saw.

Disclaimer: the picture used was found on the internet, but it was the same tube I used.

Body-Image: Age 10

I spent the majority of elementary school skinny. My highest weight was 60lbs by the end of fifth grade. But I didn't think about it or consider my body as unhealthy looking. To be honest, I never even thought about the way I looked at all. Instead, I focused my energy inward on the sick feelings that a combination of Crohn's and anxiety had cultivated. Of course, this had to change at some point and that point was a school field trip to Water Country--our local water park.

I had spent the day floating around in the wave pool with y friends. Everything was ordinary and I was having a good time. I was standing by myself, shivering under the cool grey sky without a towel--goosebumps and purplish skin from head to toe. I think I was wearing a one piece bathing suit, but I don't really remember. The details of the suit have been replaced by the scathing remarks of a girl a couple years older than me. She approached me, unprovoked, and asked coolly, "So, are you like anorexic or bulimic or something?" Stunned, I blurted out a quick "no" and they walked away, unaffected by the interaction. That was good enough for them, but from that moment on I never looked at myself the same way again. I felt so hurt and suddenly naked and I didn't quite understand why. I wanted to hide my now apparent bony legs and arms and yearned for a towel so that nobody else could see my withered body. I had heard the words "anorexia" and "bulimia" before. I knew they were eating disorders, but I never thought of them as any more than just words. I knew that I wasn't either one of these labels (especially not bulimic) so I couldn't figure out why it upset me so much. Now I understand.

Time to change some thought patterns

It's amazing how seemingly meaningless events can impact your future. I was thinking back to my post about when my phobia of vomiting began. I was seven years old, and yet that same fear is still with me at 25. Year after year the fear just never stopped. Nowhere along the way did I have any notion or reason not to feel this way. How crazy is it that an irrational fear from childhood can follow you into your adult years--that you can never outgrow something that started pre-adolescence? People stop worrying about things like getting sucked down the drain in the bathtub because as you grow up, you can rationalize and make sense of events/emotions. I guess for me it was hard to disrupt the pattern of thinking because I'd repeat the thought all day every day, then I developed a digestive disorder and almost had to think about it and be aware of the physical symptoms. What is it they say? It only takes seven days to start a habit? I've had about 6000 days of thinking this way, so it's pretty ingrained. I imagine it's similar to trying to break an addiction. Even though you may know it's harming you, it also feels very familiar and comfortable, and you may have forgotten how to live life any other way. Bottom line: I shouldn't have the same ideas about life as a seven-year-old. Now to figuring out how to unthink these thoughts.

Rewind back to the very beginning

When everything started in elementary school, I really wasn't too concerned with my peers. I wasn't really worried about if they were laughing at me or if they would say hurtful things. None of that really crossed my mind. What did cross my mind were thoughts of a teacher that would often make a spectacle of me, especially at the lunch table.

Every day at lunch I'd sit with a group of friends, but try to make myself invisible when I saw a certain lunch duty teacher stroll past our table. I'd busy myself with the kind of forced conversation that can only happen when you see someone you really don't want to talk to. During this period of time was when I started having symptoms of Crohn's and general anxiety so my appetite was pretty much non-existent. I'd eat a few crackers, drink some chocolate milk, and poke at the sandwiches my mom had cut into cute little heart shapes for me. But I never really put a dent in anything. And this teacher knew it. [Let's call her Mrs. Q for all intents and purposes--"Q" is not her actual initial.] As soon as I saw Mrs. Q coming I would cower. It seemed like she could smell my fear and anxiety from across the cafeteria and then beeline her way over. She'd come up to me and check my lunchbox. She'd inspect what I ate and hadn't eaten and tell me that I needed to eat more. She'd stand over me and just watch. This may not sound that bad, but it was the scorn in her voice that made it so awful--as well as the fact that everyone at the table could hear what was going on. A few times I had to fast before having tests done at the hospital so my mom would send a note explaining why I wasn't eating. I felt like I was at least given a pass on those days.

The worst part of all this is that it did not stop at the cafeteria. There was one day in paticular when I was in music class and Mrs. Q poked her head in to ask the music teacher a question. I felt my face flush and started talking to my neighbor about nothing. Then she pointed me out. She said something about how I looked a little better, about my eating habits, and some other nonsense about my appearance that really had no business being talked about in front of a class. I felt so red in the face and humiliated for being pointed out like that in front of my peers and by someone I should've been able to trust. Other than doctors, she was probably the person I most dreaded seeing. When I got to middle school, I was a little more at ease for not being around her. But I can't say that when I did see her, even as I got older, I didn't at least cringe a little.

Woa--it's out there now

I just wanted to thank everyone for reading my blog and for all the comments people sent on facebook today. I appreciate people taking the time to read my story. I started having a, "Holy Crap, this personal stuff is actually 'out there' for anyone to look at now" kind of moment and got a little freaked out, but at the same time I'm really happy to be finally getting all of this off of my chest. I feel like this part of my life has been mostly kept a secret--the details of it anyway. I'm sure that anyone who has kept a secret for a long time (in my case, seventeen years) knows that that kind of thing starts to wear on you. My hope in blogging all of this is that I can feel like I'm living a more open life and not like I have to make up excuses for who I am, but to be truthful in all of it. I realized lately that as a defense mechanism to when people ask me "why are you so skinny?" I usually say, "Because I have Crohn's," and that usually shuts them up, or at least opens up the conversation to something not of criticism but of respect and understanding. I always feel kind of weird saying it, but I think that maybe it will teach people to think twice before judging someone before knowing them, no matter what their story.

Part 2 of the NG Tube

After the office visit, my doctor had me stay at the hospital for a few days to get used to having the NG Tube. I lay in the hospital bed with the tube fastened to my cheek with medical tape while Peptamen--high calorie supplement--was slowly pumped in at 50cc per hour. Initially I did okay with the slow drip, but as they upped the pace, I woke up feeling so sick and full that I was very close to throwing up. It was an unpleasant thing to get used to. I remember going to the kid's recreation room at Children's Hospital with the tube still in, me pulling my medical tree behind me everywhere I went. I did some arts and crafts and met a boy named "Bernie". He didn't talk much, but we kept each other company. I named a stuffed bear I got at the hospital after him.

I was so excited to get out of the hospital--at first. I couldn't wait to be back at my home again. It was near Christmas time and we had all the decorations up, so home felt even more cozy than usual. But then the reality hit. I would have to be "hooking up" to this machine every night from now on if I was going to gain any weight and have any easy doctor's appointment. In the beginning, a visiting nurse would come and help me insert the tube every night at around 7:30/8:00. I remember being at school and feeling like the days were just flying by. I had a mental countdown by the middle of the day.

Crap, only 6 hours until the nurse gets here. All I have time for is homework and dinner and
then my night's over.

So the routine stood. My nurse would come. I would dread it. I'd fulfill my unpleasant duty of putting something foreign through my body every night, dread taking it out in the morning, pull it out anyway because I had to, and start the whole cycle over again. There were a few times at school when people asked me why my face was all red and torn looking. I didn't want to tell them that the medical tape that holds my feeding tube in place rips the hell out of my skin because it's not meant to come off easily. That's not a cool thing to say in middle school. I don't think I told much of anyone what was going on with me except for a few close friends,
but over time it seemed like people I didn't even know were getting suspicious of me.

The one stand out story that I remember from the era of the NG Tube happened one Saturday morning. I was having trouble mustering up the courage to pull out my feeding tube--more than usual anyway. I just sat in bed for hours slowly tugging at it little by little. My mom came up and asked me if I wanted anything for breakfast. I told her I'd like a bagel, but that she could hold off a few minutes because I still hadn't gotten the NG out yet. She went downstairs for a bit while I continued to try and then chicken out. After a while, my mom called upstairs that my bagel was ready, but I still hadn't done it. It must have been at least another half an hour before I just decided to do it. And then 1-2-3 I yanked it out, and the tube had an honest to God kink in it. I could feel the kink travel all the way up my throat and out my nose. It did not feel good. Now, this process never feels good, but usually it's not as bad as when you've got a bent hose trying to make its way out of a small nostril. After that day, I told my parents that I just couldn't do it anymore. It was too mentally draining to agonize about doing this every day and then actually have to perform it before bed and first thing in the morning. For a while I tried drinking the supplements that were going into me via feeding tube, but they were pretty gross, and sickeningly filling. After telling my doctor this, he suggested that I either drink 10 or 11 of those things per day or have a G-Tube surgically placed. I opted for the G-Tube which I ended up having for about 10ish years. More on that soon.

NG Tube: Age 11-12

We left for Boston early that morning, before the sun came up. Everything seemed brown and murky like the way a foggy sky looks under orange fluorescent street lamps. I didn't want the ride to the city to end. I would have felt perfectly happy sitting in traffic for eight hours if it could postpone what I was about to go though for another day.

"Are they going to put the tube in right when we get there?" I asked my mom nervously.
"Probably not," my mom responded, hoping to calm me down.

When we arrived in the waiting room, it felt like the shortest wait I'd ever experienced at a doctor's office. Almost immediately after calling me in, the nurse said, "Okay, let's get started."

"What?! Just like that?" I asked.

Yup just like that. She opened a drawer and pulled out a plastic, sterile packet with a long, snaky tube inside and told me what we would do and that it would feel like pressure or the twinge of a sneeze in my sinuses. Then she slathered on some clear jelly to the tip of the tube in preparation. That's when I started to get really nervous.

"Alright, now just relax," the nurse said. Yeah right. I wondered while she expertly instructed me how to administer a feeding tube if she had actually ever tried it on herself to really see what it felt like. She handed me a small cup of water that I was instructed to drink at a key point in the process. I hated this already.

"Okay, here we go." She slowly brought the lubricated tube up to my right nostril--I could smell the jelly. And up it went. Up my nose until I could feel it under my eyes. They started to water. I could feel it bend over the arc of my nasal cavity and start down my throat. It tickled my gag reflex a little, and at that moment I was told to start drinking the water.

"Swallow, swallow, swallow," my nurse coached. I felt like I was being cheered on at a deranged pep rally. So I swallowed and gasped until the tube had reached my stomach. Finally it was over. The nurse then pulled out a long, thin wire that had been the tube the whole time. (I still don't know why that was there, and why they don't take it out before putting it through your face.) I just sat there in shock, my eleven-year-old brain trying to comprehend what had just happened to me and accept that this would be my life from now on--my punishment for not eating. I had only been sitting for about a minute with this contraption dangling out of my face when the nurse suggested we take it out. God, I never even thought about the 'taking it out' part. I had just barely come to grips with it going in. I told her I wanted to do it myself, and she let me. She said to do it quick like taking off a band aid, so I did. I got it out of me as fast as possible. I felt it travel up my throat, through my nose, and out again. Almost no sooner after it was out, the nurse said, "Okay, now you can try putting it in yourself now." I did. It never got any simpler.

Day 1: July 7th

[Record of symptoms from July 7th]

Last night I had the most noticeable symptoms of Crohn's that I have experienced in a long time. (By "noticeable" I mean it more in terms of physical pain than constant anxiety.) Around 7:30pm I started to notice a pit of hunger in my stomach. I had snacked throughout the day but didn't have a big meal since breakfast. After being given a clean bill of health from my GI doc a couple months ago, I've been feeling confident enough in my disease to eat pretty much whatever I want. That being said, my boyfriend, Dave, and I decided to go to a local burger joint for some dinner. I figured it wouldn't be a big deal because I usually don't have any trouble eating a nice big bacon cheeseburger from time to time. Anyway, after gobbling up the burger and a side of fries, I immediately regretted it. It started small. My stomach felt full, but not really unpleasant at first. Then the "contracting" sensations began. It felt like every few minutes, my stomach would seize up for almost a minute and then go away. The intermittent pain was incredibly nauseating. All I could think about was the quarter pound of beef sitting inside of me while my stomach constricted around it. Gross. And again the anxiety of uncertainty abounded. I hated not knowing when the pain would start. I hated not knowing if it would stop soon or if I was in for a few days or weeks of this agony. I started worrying that the pain, coupled with my anxiety, would make me vomit. This is often my worst nightmare when I start feeling sick. When my stomach feels kind of iffy, I naturally worry that I am going to throw up and those feelings of anxiety fuel the nausea that makes it more likely that I will actually do so. It's a terribly vicious cycle. With all that in mind, I decided to call in sick to work today, because I didn't want to risk feeling this way all day--in public--and still have to function at a job where children depend on me. (I am a teacher's assistant in preschool.) As I lay in bed, the pain lasted until 3:30 in the morning. Every time I would drift into a quasi-slumber, the pain would wake me up until my drowsiness eventually overruled.

As a testament to the effects of anxiety on Crohn's Disease, all day today I've been afraid to eat. I've worried that if I eat I'm going to experience the same pain from yesterday all day today. At first I was sipping water and drinking nutritional supplements for fear that anything solid would disrupt the delicate balance between a good day and bad day. But slowly, I've stared eating bland, beige-colored "blah" food to test the waters; so far I've been pretty okay. It upsets me to know that I haven't eaten much today and that my weight might suffer for it. I can be so cautious sometimes that it is detrimental to my health and sanity I think.

Vomit Phobia: Age 7

I was sitting in the front seat of my dad's green dodge Intrepid when I spotted his orange-flavored Certs on the dashboard. He had just buckled me in to bring me to my Nonnie's house so he and my mom could go out for the night. (Nonnie is what I call my grandmother if you couldn't have guessed that already.) Me with my nimble seven-year-old fingers carefully unwrapped the silver paper around the mints and peeled it away in tiny curly-cue strips. One by one, I popped them into my mouth and chewed them up, almost impervious to how they tasted until I reached the bottom of the pack.

When we arrived at Nonnie's house a few minutes later, all was well. I had a video about horses that my mom had rented for me. I promptly pushed it into the VCR and watched. Soon, I began to feel a sick rumbling in my stomach. I had never experienced something so gross in my gut before. After a while, sitting up was unbearable. I grabbed a big blue pillow and laid face down on the floor while my movie played innocently in the background. I hated the bile curdling feeling and forced myself to sleep it away. I don't remember my parents coming to pick me up that night. All I remember is waking up next to my mom in my parents' bed and feeling a sickening urgency. My mom rushed me out of bed and down the hallway. I vomited all the way to the bathroom on the other side of the house. I was in such shock. I never wanted to feel that way again. The next morning, I sat in my nightgown on the wood floor and inspected the cracks for remnants of vomit from the night before. I swear I found some and believed it would always be stuck in the cracks.

After that night, I developed a fear of eating. I was afraid that if I ate too much of anything, I would puke it up again. Irrational, yes. But as a seven-year-old, nothing could be more serious. My anxiety about vomiting manifested itself into constant upset stomachs, loss of appetite, and so many sick days from school, I barely set food in the third or fourth grade. My parents were constantly bringing me to the pediatrician who over countless visits without diagnosis recommended that I see a specialist at Children's Hospital in Boston.

Sitting in the waiting room of my doctor's crowded little office became a dreaded routine for me. As I sat cramped on my dad's lap, leafing through old "Highlights" magazines, my mind raced with the heinous possibilties I may have to endure that day. I silenetly pleaded that he would not schedule some invasive procedure or test for later on that day like a lower GI or Colonoscopy. I didn't know the technical names of these "tests". I just knew they were very unpleasant and that I hated trips to Boston because of it. I felt it was unfair to put me into such procedures so blindly and without any mental preparation.

When he called me and my family in, my stomach would lurch as I walked past rows of file cabinets and optimistic posters of clowns and whales. I'd sit on the crinkly white paper on the exam table as he'd gently tap and press down on different points of my stomach while listening in with a stethoscope. Visit after visit I reported the same thing: no appetite. Sometimes this was accompanied by diarrhea or actual stomach aches, but mostly I didn't feel like eating. My stomach after months deprived of a good meal must have shriveled up into a tiny vacuum. A few years and many medications later, a Nasal Gastric (NG) Tube was suggested. I agreed, scared, but after a lot of reassurance thought, "How bad can this be?"

I Have Crohn's Disease

I have had Crohn's Disease since I was eight years old. At 25, it's hard to remember a time not having the disease. I'm realizing lately how much of my attention and emotions go into having a disease that nobody wants to talk about (or knows much about in my age bracket). So, I've decided to chronicle what it is like to be living with Crohn's on a daily basis. Even on the good days, the fickle nature of the disease constantly creeps into my psyche. Even on those good days, I know how quickly things can change.

Until recently, I haven't realized what a toll the disease has taken on my emotional and mental health. When I was in middle school, my doctor suggested that I see a psychiatrist and a counselor to help me deal with all the mental strain the disease can cause. I think I was too young to comprehend why I even needed to be there. I didn't think I needed a shrink for anything Crohn's-related. What could I possibly have to say about having Crohn's? (I know now that the answer is a lot.) I remember talking mostly about panic attacks, school, and general teenage angst. I had pretty much accepted the disease as a part of my life and didn't think about all the ways it was affecting me (and directly contributing to the teenage angst, panic attacks, and problems at school). I thought those things were detached from it; now as an adult, I can see how formative they were to the person I am today.

Another thought--I hate when people make judgments about me before knowing that I have Crohn's. I can't tell you the number of times strangers, customers, coworkers, random folk at parties, etc. have asked me if I am anorexic or bulimic out of the blue. (This started in fourth grade by the way, but more on that later.) The way they put it, they might as well be asking me the weather, like it's no big deal. I can be having the greatest day, symptom-free and feeling good about myself and then someone will shatter that by saying something like, "You're so skinny! Do you even eat??" "Did you lose weight? I'm really starting to worry about you," or my favorite, "How much do you weigh, 85/90 pounds?" When people start playing the "Guess My Weight Game" I usually lie and tell them that I am heavier than I am to save my pride and shut them up, because sometimes their snide guesses are pretty close to the truth. It drives me crazy that people have the balls to say things like that to me (or any women) by making their bodies the topic of scrutinizing conversation. It also makes me think that when people see me, they are not just seeing me, they are making assumptions about me, and often don't have an ounce of restraint when telling me exactly what they think. That makes me incredibly angry, as well as totally self-conscious while I wonder if that's how everyone thinks of me. (I know, I know, you shouldn't care what other people think, but c'mon. You know it's hard sometimes when public opinion is shoved in your face on almost a weekly basis.)

Needless to say, I've got some body-image issues related to the disease, but I'm working on them. I hope that this blog can be a place where people with Crohn's can share their stories and help each other out in the self-esteem department.