Preparing for Surgery

A few days later I got a call with the results from that horrible test. My doctor concluded that I had a stricture in my small intestine caused by scar tissue around the area. The scar tissue was a result of years and years of Crohn's Disease recurring at the same site.

You're going to need to have surgery, my doctor informed me.
Yeah I figured, I said.
Honestly, I don't know why you didn't have this done years ago.
Yeah. Me neither...

At least by this point, I was confident that my doctor knew his stuff. I didn't feel like I was being blamed for my disease anymore and that the symptoms I had been describing for what seemed like forever were not all just in my head. I felt like I finally had an ally in the medical system. After I hung up the phone, I told my Mom and Dad that I would in fact need surgery. I think they expected it and were optimistic that it would be good for me in the long run. (Spoiler alert: it was.) When I met with my GI doc, he gave me a few surgeons to choose from complete with photo, bio, and area of expertise. I, being the nervous nelly that I am, picked the head of surgery in Gastroenterology and Endocrinology. He seems like a safe bet, I thought to myself. So I made an appointment with him and just like that, I had set a date: September 17th, 2009. I chose September because I was going to be a bridesmaid in July and I was told that the recovery time for a surgery like this was between two to three months. Better stay on the safe side. I'm not going to get into it, but a lot of bummer-worthy personal life stuff happened during that summer and by the time surgery season had approached I needed a vacation, so I went out to Star Island on the Isles of Shoals to unwind for a few days. While I was there, I got a voicemail from my surgeon telling me something had come up and he had to postpone my surgery for another week. I was a little pissed at first, because I had done all this mental preparation and had really come to terms with being incapacitated for the next two or three months. But who am I kidding, I was also totally psyched to have one more week of freedom, and by this point I was actually feeling great so I wanted to live it up as much as I could. (And by live it up I mean I went to a lot of bookstores and bought a bunch of books for my recovery that I never actually read. This kind of stuff excites me, clearly I am a bit of an introvert.)
So that extra week came and went quicker than I could have every imagined and before I knew it, it was the night before my surgery. Now, I say I was "mentally prepared", but what I mean is that I was still very much freaking out that I would a.) die on the operating table b.) wake up during surgery c.) throw up uncontrollably after surgery d.) lose a scary amount of weight from my 97 pound body immediately after and e.) sneeze every ten minutes after surgery and bust a stitch because my allergies had really kicked it up that year. I just decided to try not to worry so much and remember that I would be knocked out for all the painful stuff and that when I woke up, I would be on all kinds of wonderful drugs that would make everything okay.  And boy, did they ever make things feel pretty okay for a while. I got into bed and relished in the comfort of it before my last night before surgery. The next would be one to remember.

Tune in next time for: Surgery Day

My Reintroduction to This Blog

So, I realize that it has been a terribly long time since I have posted anything to this blog--9ish months to be exact--but I think I am ready to get back on the blogging wagon again. (Or is is off the wagon?) Anyway, the past nine months have been much of the same that I had written about previously in terms of the psychological preoccupation with being underweight and feeling like I look sickly. But I am starting to focus less and less on that because I have generally been feeling good. Really good for me actually. I work full time with two-year-olds now and I like to believe that they have made my immune system some kind of super-human germ fighting machine. So that's good. Thanks kiddos. I've also had to clean up throw up once or twice/witness it occur so the fear of vomit  has become kind of a dull worry instead of an all-encompassing life obsession. You kind of start to lose your gag reflex in this field, I must say that.

Also in the last year, my college boyfriend passed away on my birthday. That was extremely hard. A lot of emotions arise when you lose someone you were once so close to. It has been strange to deal with, because we hadn't been together for years and hadn't really communicated much since we broke up either, but a whole lot of confusing feelings kept coming to the surface. This whole whirlwind of grief had so many different feelings and responses: loss; denial; guilt; remorse; depression; withdrawal; loss of appetite; feeling like you don't have a single thought in your whole head, but then inevitably having too many thoughts to even begin to process at one time; numbness; blank wall staring; not sleeping; sleeping all day; fear; fearlessness; feeling connected; and always wondering if you could have said or done something differently. It is an ongoing process, but I am handling it reasonably well (for me anyway). I am typically so hyper-focused on sickness and death that it is almost paralyzing, but I almost feel reassured that he is alright in some way. Like, since he let himself pass on into whatever lies ahead on the other side, there is somehow nothing really to fear in life. It really helps put mundane worries and life's little problems into perspective. Our last conversation actually happened because of this blog. He had read it and wrote me a really heartfelt message on facebook that, in retrospect, feels especially meaningful. I think part of me was not ready to come back to this blog for some reason because of that. I don't know how that makes any sense, but I'm sure I'll hyper analyze it until it does.

So anyway, I will try to keep up with this as much as I can, and at least be posting more than once every nine months. Sorry to be such a downer the first time back by the way (not that most of my posts are not at least kind of a bummer). All things considered, this was probably the biggest life-shaking events to happen in my life during my pseudo-absence so I figured I should write about it. It really affected every part of my life for a few months--including my health--but things are better now. I am finding more peace and have done more soul searching in the last few months than ever before. I'm finding that with loss can come growth and healing, which is a hard concept to grasp at first blush. But experiencing something like this really does make you appreciate all the people and relationships in your life that much more. Now, if you'll excuse me, I'm going to go watch a basketball game with one of those special people now :) Goodnight!

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.