It's been a while yet again--which has become a common introductory sentence in this blog over the last few years it seems. For the most part, my health had been good. My weight was up to an all-time high last year (without the assistance of a feeding tube) and I was feeling almost like Crohn's was a thing of the past. But I should have known better. With a chronic disease, remission does not mean "the end" no matter how long you're in it for. I'd have a few bad days here and there, but nothing really to write home about until I started having difficulty swallowing. I had an endoscopy done and all they really found was that I had been having acid reflux and needed to start taking Prevacid and then Prilosec. For the most part it cleared up, but over the last few months, I've been noticing a gradual decline. My throat has been bothering me again. It feels as though it's coated in mucus near the bottom of my throat and that there's a lump to get over somewhere in the middle when I swallow. It's a little concerning. Add to that random bouts of pain, body weakness, lack of energy, and weight loss and I'm thinking I'm right in the middle of a flare. I had some blood work done and my inflammatory markers are higher than any baseline that I've had and my insurance might not cover my upcoming colonoscopy/endoscopy. All of this stuff is just making me anxious any moment I am not distracting myself with work or some other kind of activity. It gets worse at night when everything slows down. I'm just a worrier. I don't know what's going on in my body, but something doesn't feel right. I've been especially self-conscious about my weight again. When it was up, it seemed like every time I ate anything I gained a little or at least maintained the weight I put on. I was so happy and couldn't imagine a time when I'd ever need to wear my size 0-1 size jeans again. I almost got rid of all of them, but kept a few "just in case". I'm glad I did, because I'm running out of things that fit again. Everything I wear feels like it sags off my body and I'm constantly aware of it, even the stuff that was once way too small. I try to angle my body in ways to hide the loose areas where I used to have an ass and at least somewhat shapely thighs. I'm back to feeling like a stick figure again and it's discouraging. Now as the weather is getting warmer, I'm finding it a little harder to layer up and hide myself as easily as I did in the winter months. I always joke with people saying that at any given time I have at least 3-4 shirts on (which is true, not because I always love to layer, but because it provides me with some illusory cushion). As I'm sure I've written before, strangers have never hesitated to ask me if I'm anorexic or bulimic. It's a harsh blow to my esteem, because I take that to mean that I look sick. I don't look like a healthy person. And for the last few months I think I've been in denial that I could actually be sick again. I try to make myself appear a certain way because I hate for people to think that I'm sick or that I'm choosing to lose weight and not eat as much when it's really just because I don't feel well enough to much of the time. And when I do feel well enough to eat a lot, those few meals are not going to add any noticeable pounds to my frame. I try to pretend like I haven't lost anything. I try to mask my body so that no one will notice, but I know the truth and I know I don't look the same. I know I'm not as healthy as I was last year. So I guess maybe I should just stop denying it. Maybe I should just stop trying to cover up and pretend like everything is okay, because if people start to think that I look sick, it's because I kind of am and it's not necessarily my fault. I just feel this link between weight loss and failure or judgment from anyone who wants to put their two cents in. And maybe I'm not as healthy as I once was, but it doesn't mean it will last forever. Sometimes losing it makes you appreciate it all the more when it's back.
Wednesday, July 8, 2015
Waiting in Limbo
My Crohn's hasn't been great over the last few months. It's certainly not the worst it has ever been, but it's gotten me down a little bit. The latest blow just happened a couple of minutes ago but more on that in a minute. I had gotten a colonoscopy/endoscopy a little over a month ago and the results showed inflammation throughout my colon as well as ulcers and inflammation in my stomach. This was somewhat a relief to find out because my weight started dropping and I began feeling weak and generally fatigued more often than not. And as I typically do, I blamed myself for this. I was in denial that all my clothes that I was once squeezing into were now so loose that they hung off my bony body. I wouldn't let myself believe it at first. But when it got to the point of no denial, I thought it was because I just wasn't trying hard enough to force down 3000 calories a day even when it hurt to try. I've somewhat accepted my body the way it is now--back down to about 97 pounds where it seems to settle, but I look a bit emaciated. I feel like I lose a little every day and I worry about "moving" too much. Like any little bit of cardio is going to make me shrink even more rapidly. The part that bothers me the most is that it physically hurts to sit down at this weight. My butt has absolutely no cushion anymore and when I sit on a hard seat I can feel my bones grinding against the surface. It's a little depressing.
So anyway, after reviewing my results, my new doctor decided that it would be a good idea for me to start on Remicaid to see if that would put me into longterm remission. I read up on it and while there are a lot of risks involved, an overwhelming number of people seem to achieve remission and even gain the weight their bodies never could because of malabsorption. This was great news! I could eat like I normally would and it would actually go somewhere! My doc said it would be probably a week to get my insurance's approval and that I could start within a week of that. But now, a month later, I hadn't heard anything from my insurance company until today and was informed that they had denied my request. For some reason they thought I had tried Humira (even though I've never been on a biologic before) and denied me because they thought I had failed on it. I felt crushed. It makes me feel so frustrated with our health care system, because despite all the records and proof my doctor sent to them, it's as though they're looking for a reason to deny people who are actually sick and in need of care. It doesn't make sense to me. They make it so hard to get the help you need when you need it until your illness progresses to be worse than when you started. It makes me feel awful for people who are worse of than me who are also going through the same situation and just want the chance to be well. I guess it's the business of being sick.
So anyway, after reviewing my results, my new doctor decided that it would be a good idea for me to start on Remicaid to see if that would put me into longterm remission. I read up on it and while there are a lot of risks involved, an overwhelming number of people seem to achieve remission and even gain the weight their bodies never could because of malabsorption. This was great news! I could eat like I normally would and it would actually go somewhere! My doc said it would be probably a week to get my insurance's approval and that I could start within a week of that. But now, a month later, I hadn't heard anything from my insurance company until today and was informed that they had denied my request. For some reason they thought I had tried Humira (even though I've never been on a biologic before) and denied me because they thought I had failed on it. I felt crushed. It makes me feel so frustrated with our health care system, because despite all the records and proof my doctor sent to them, it's as though they're looking for a reason to deny people who are actually sick and in need of care. It doesn't make sense to me. They make it so hard to get the help you need when you need it until your illness progresses to be worse than when you started. It makes me feel awful for people who are worse of than me who are also going through the same situation and just want the chance to be well. I guess it's the business of being sick.
Wednesday, June 12, 2013
It's been way too long: A recent flare or stomach bug. Spoiler alert--it sucked.
Hey folks. Sorry for the delay over the course of the last, oh say, two years or so. The public writing has kind of taken a backseat to the living I guess I can say. My Crohn's hasn't been awful either for the most part and so I haven't been super inspired to write--which is kind of a good thing, but a little inspiration never hurt anyone. Lately though, I've been kind of having mini-flare ups that I think have more to do with stressful life situations rather than the active disease itself. Can anyone else sympathize with this? For me, I know that I have a pattern and it is very relationship-related. Anytime a romantic relationship begins to go down the tubes, or whenever I go on some kind of vacation, my whole digestive system kind of goes haywire.
Just a couple of weeks ago, I was feeling great. My appetite was amazing, I was exercising and feeling better about my body, and then I went on vacation. I became overconfident in my disease and ate waaaay too much. This is my cycle. I feel so good, that I think to myself, "I can eat just like everyone else! I can eat more than everyone else!" and that's when I get myself in trouble. Within a couple of hours of what seems like a binge eating session, now that I think about it, my stomach had that oh so familiar feeling again. Panic struck. I was out in public, in a city that wasn't my own. I barely knew where I was or how to get back to a place where I could be sick privately. I remember getting to the restaurant with my friend and thinking, "Relax, Brittany. You don't even have to eat anything, just sip on some water. You can make it. You'll be fine." But all this positive self-talk could not override the feelings that were looming from my guts. Tightness. Cramping. Sweat seeping out of my pores and a racing heart took the reigns and I found myself powerless. It was a panic attack like I hadn't had in years. A panic attack like I hadn't had since Jake died. I began to swallow a lot of air. "I need to go. I can't throw up all over this restaurant," I said. I left the restaurant swiftly and got into a cab, praying I wouldn't lose it right there in the backseat.
My cab driver was impressively chatty, which sort of helped to distract me from the situation happening inside of me. We talked about the DC Metro and the work they were doing on the Washington Monument. We talked about corporal punishment. We talked about the differences between our two cities. We talked about a lot in the span of those 8 minutes, and at the end, I thought to myself, "Maybe this was the distraction I needed. Maybe I am going to be fine." Then I stepped out of the cab. I rushed to the friend's apartment we were staying at, grossly aware of how each step intensified the unsteadiness I was feeling in my stomach. The fifty foot walk to the apartment may as well have been a mile to me in that moment.
When I finally reached the apartment, I propped myself up on a few pillows in bed and began frantically trying to journal my feelings away. Sometimes that works. Like it desensitizes my fear somehow, but it didn't work this time. All my turbulent scrawling did little more than add a layer of chicken scratch to my mini-travel journal. I lay there, trying to redirect my attention to anything. The view of the trees and the street from the wall-to-wall windows, a funny video clip that I was watching from my 2x3 inch cell phone screen. Nothing worked. Then I began to feel really sick. My stomach cramped in a way that made me pray that I would throw up and it would all be over. I never thought I'd see the day. Me and all my phobia, begging to evacuate my insides for a moment of relief. I thought it would happen. I hiccupped and felt something behind it and bee lined for the bathroom. I hung myself over the toilet like I had seen done in movies so many times before, but could never even fathom doing in real life. But there I was. Hunkered down on the floor in the bathroom, hoping for release but only dry heaving my brains out. God, just let it happen. I've accepted that it's gonna happen, so please just let it happen.
It was a very long night. My stomach hurt more than I can remember it hurting since I was a freshman in college. It cramped up so hard, that my back began to spasm. I forgot how absolutely painful these episodes could be. It's like having a Charlie horse throughout your whole mid-section that comes and goes when it pleases. I gripped the bathroom trash can tight by my face for 15 hours until I finally threw up, and even after it was finally over, I needed to continue monitoring how often the cramping was happening. I found that I would experience 37 seconds of intense contractions that tapered off during seconds 38 and 39 until finally vanishing by 40. Then I would have about two minutes of relief before the whole cycle started again. I felt like I was in labor, counting down the minutes and seconds and keeping track of them on a note in my phone. I had lived this way for months at a time in high school and college without ever thinking to call a doctor. What the hell was I thinking?
Just a couple of weeks ago, I was feeling great. My appetite was amazing, I was exercising and feeling better about my body, and then I went on vacation. I became overconfident in my disease and ate waaaay too much. This is my cycle. I feel so good, that I think to myself, "I can eat just like everyone else! I can eat more than everyone else!" and that's when I get myself in trouble. Within a couple of hours of what seems like a binge eating session, now that I think about it, my stomach had that oh so familiar feeling again. Panic struck. I was out in public, in a city that wasn't my own. I barely knew where I was or how to get back to a place where I could be sick privately. I remember getting to the restaurant with my friend and thinking, "Relax, Brittany. You don't even have to eat anything, just sip on some water. You can make it. You'll be fine." But all this positive self-talk could not override the feelings that were looming from my guts. Tightness. Cramping. Sweat seeping out of my pores and a racing heart took the reigns and I found myself powerless. It was a panic attack like I hadn't had in years. A panic attack like I hadn't had since Jake died. I began to swallow a lot of air. "I need to go. I can't throw up all over this restaurant," I said. I left the restaurant swiftly and got into a cab, praying I wouldn't lose it right there in the backseat.
My cab driver was impressively chatty, which sort of helped to distract me from the situation happening inside of me. We talked about the DC Metro and the work they were doing on the Washington Monument. We talked about corporal punishment. We talked about the differences between our two cities. We talked about a lot in the span of those 8 minutes, and at the end, I thought to myself, "Maybe this was the distraction I needed. Maybe I am going to be fine." Then I stepped out of the cab. I rushed to the friend's apartment we were staying at, grossly aware of how each step intensified the unsteadiness I was feeling in my stomach. The fifty foot walk to the apartment may as well have been a mile to me in that moment.
When I finally reached the apartment, I propped myself up on a few pillows in bed and began frantically trying to journal my feelings away. Sometimes that works. Like it desensitizes my fear somehow, but it didn't work this time. All my turbulent scrawling did little more than add a layer of chicken scratch to my mini-travel journal. I lay there, trying to redirect my attention to anything. The view of the trees and the street from the wall-to-wall windows, a funny video clip that I was watching from my 2x3 inch cell phone screen. Nothing worked. Then I began to feel really sick. My stomach cramped in a way that made me pray that I would throw up and it would all be over. I never thought I'd see the day. Me and all my phobia, begging to evacuate my insides for a moment of relief. I thought it would happen. I hiccupped and felt something behind it and bee lined for the bathroom. I hung myself over the toilet like I had seen done in movies so many times before, but could never even fathom doing in real life. But there I was. Hunkered down on the floor in the bathroom, hoping for release but only dry heaving my brains out. God, just let it happen. I've accepted that it's gonna happen, so please just let it happen.
It was a very long night. My stomach hurt more than I can remember it hurting since I was a freshman in college. It cramped up so hard, that my back began to spasm. I forgot how absolutely painful these episodes could be. It's like having a Charlie horse throughout your whole mid-section that comes and goes when it pleases. I gripped the bathroom trash can tight by my face for 15 hours until I finally threw up, and even after it was finally over, I needed to continue monitoring how often the cramping was happening. I found that I would experience 37 seconds of intense contractions that tapered off during seconds 38 and 39 until finally vanishing by 40. Then I would have about two minutes of relief before the whole cycle started again. I felt like I was in labor, counting down the minutes and seconds and keeping track of them on a note in my phone. I had lived this way for months at a time in high school and college without ever thinking to call a doctor. What the hell was I thinking?
Sunday, August 12, 2012
Surgery Day
I awoke the morning of my surgery nervous with a lump in my throat and a runny nose to boot. I had packed a large backpack the night before with all the books, music, and bed-ridden entertainment I could stuff into it. I dumped it onto the seat of my dad's truck and off we went. As we drove there, I flashed back to all the feelings I had felt as a child on the way to the hospital. I was scared of what was to come as I pressed my head against the cool glass window as the city quickly whirred past us on the Tobin Bridge. After taking many deep breaths in effort to calm myself down, we arrived at Mass General Hospital for my biggest surgery yet.
When we got to the waiting room I tried to remind myself that I would be knocked out. That I wouldn't feel anything, wouldn't even know that it happened. I would just wake up and everything would be completely fine. But there were some immediate interactions with doctors and anesthesiologist that made me quite a bit on edge.
Here's how my initial conversation with my medical professionals went:
-Hello, Brittany? my anesthesiologist stated in question like form. How are you doing today?
-Yes, Hi. I'm okay. A little nervous, I replied.
-You'll be fine. You're here for a small bowel resection? (Again with the question statement.)
-Yes.
-Okay. It looks like we're going to have to give you an epidural today, because the surgeon is going to be cutting a vertical line from your belly button to your lower abdomen. It will be about a six inch incision.
-What? My doctor said it should only be two inches tops.
-No, from what I see here, you're going to have a larger scar and need more than local anesthesia.
-Uh. Okay.
-Oh, and after your surgery, you may be vomiting for a few days and at least experiencing a lot of nausea.
Great. My biggest fears come to life...
-Is it possible that I won't throw up?
-It's not likely. Your stomach and intestines are going to be healing themselves and it is a huge shock to your system. Your going to be learning how to digest all over again.
At this point, he left the room for a while (in order to get the epidural I assume) as I discreetly panicked to my mom about getting an epidural. She told me they are not so bad and not to worry. As she tried to talk me down, he returned with the epidural.
-Okay, now lean forward, he said as he guided me forward.
Just barely before he could get the needle into my spine, my surgeon showed up.
-What are you doing? he asked. The anesthesiologist told him that I was getting an epidural due to the extensive incision that was going to be made during surgery.
-She doesn't need that! he replied. She is only going to have a 3-4cm long incision at most.
-Oh. Okay, I'm sorry! he said.
At this point I was unamused. All I could wonder was, How the hell are these two men not on the same page about my surgery right now? How could two people have such drastically different ideas of what was about to happen to my body while I lay unconscious under the knife? Aren't you guys supposed to be on the same goddamn team!?
Needless to say, if I wasn't already terrified before, I was terrified now. Long story short, somehow, between the two of them, they knocked me out efficiently enough so that I didn't wake up during surgery--thank god.
I woke up dreamy-eyed, unaware that the surgery had even happened and drugged up to high heaven. They gave me a morphine drip with a delightful little button that allowed me to control my dosage. It certainly helped with the pain, but it caused my conversation skills to dwindle to that of a two-year-old. I also fell asleep periodically while people talked to me, but I figured they would understand and didn't feel too guilty. While I did feel mostly pain-free, I was extremely nauseous. They wouldn't let me have even a drop of water for a few days because even that could disrupt the healing process and cause a violent reaction. But eventually I had to try something. I had a very small sip of water and a bite of applesauce but that was all I could muster. And a few hours later, I felt like I could barely hold anything down. I called my nurse and said I was feeling really sick and realized that under my surgical dressings, my stomach had ballooned to twice its size. She said it was probably bile and that she could get my stomach pumped by putting an NG tube through my nose. I quickly suggested that we try attaching a tube with a bag to my G-Tube, because why not? It was there almost exclusively because I didn't want to put anything up my nose ever again. So the nurse brought in a connecting tube and an empty liter-sized bag and I attached myself to it. Within a second of opening the clamp, bright green bile rushed through the tube and into the empty bag. Quickly, the bag began to expand with this almost Kool-Aid green liquid until it was completely full and I needed to attach another one. The second bag only filled up a third of the way, but the color of that bile still haunts me. I couldn't eat or drink anything green for months because it brought back too many memories of what I now know is inside of me. It was a huge relief to release all that distended pressure from my belly, but damn if that wasn't gross.
To be continued...
When we got to the waiting room I tried to remind myself that I would be knocked out. That I wouldn't feel anything, wouldn't even know that it happened. I would just wake up and everything would be completely fine. But there were some immediate interactions with doctors and anesthesiologist that made me quite a bit on edge.
Here's how my initial conversation with my medical professionals went:
-Hello, Brittany? my anesthesiologist stated in question like form. How are you doing today?
-Yes, Hi. I'm okay. A little nervous, I replied.
-You'll be fine. You're here for a small bowel resection? (Again with the question statement.)
-Yes.
-Okay. It looks like we're going to have to give you an epidural today, because the surgeon is going to be cutting a vertical line from your belly button to your lower abdomen. It will be about a six inch incision.
-What? My doctor said it should only be two inches tops.
-No, from what I see here, you're going to have a larger scar and need more than local anesthesia.
-Uh. Okay.
-Oh, and after your surgery, you may be vomiting for a few days and at least experiencing a lot of nausea.
Great. My biggest fears come to life...
-Is it possible that I won't throw up?
-It's not likely. Your stomach and intestines are going to be healing themselves and it is a huge shock to your system. Your going to be learning how to digest all over again.
At this point, he left the room for a while (in order to get the epidural I assume) as I discreetly panicked to my mom about getting an epidural. She told me they are not so bad and not to worry. As she tried to talk me down, he returned with the epidural.
-Okay, now lean forward, he said as he guided me forward.
Just barely before he could get the needle into my spine, my surgeon showed up.
-What are you doing? he asked. The anesthesiologist told him that I was getting an epidural due to the extensive incision that was going to be made during surgery.
-She doesn't need that! he replied. She is only going to have a 3-4cm long incision at most.
-Oh. Okay, I'm sorry! he said.
At this point I was unamused. All I could wonder was, How the hell are these two men not on the same page about my surgery right now? How could two people have such drastically different ideas of what was about to happen to my body while I lay unconscious under the knife? Aren't you guys supposed to be on the same goddamn team!?
Needless to say, if I wasn't already terrified before, I was terrified now. Long story short, somehow, between the two of them, they knocked me out efficiently enough so that I didn't wake up during surgery--thank god.
I woke up dreamy-eyed, unaware that the surgery had even happened and drugged up to high heaven. They gave me a morphine drip with a delightful little button that allowed me to control my dosage. It certainly helped with the pain, but it caused my conversation skills to dwindle to that of a two-year-old. I also fell asleep periodically while people talked to me, but I figured they would understand and didn't feel too guilty. While I did feel mostly pain-free, I was extremely nauseous. They wouldn't let me have even a drop of water for a few days because even that could disrupt the healing process and cause a violent reaction. But eventually I had to try something. I had a very small sip of water and a bite of applesauce but that was all I could muster. And a few hours later, I felt like I could barely hold anything down. I called my nurse and said I was feeling really sick and realized that under my surgical dressings, my stomach had ballooned to twice its size. She said it was probably bile and that she could get my stomach pumped by putting an NG tube through my nose. I quickly suggested that we try attaching a tube with a bag to my G-Tube, because why not? It was there almost exclusively because I didn't want to put anything up my nose ever again. So the nurse brought in a connecting tube and an empty liter-sized bag and I attached myself to it. Within a second of opening the clamp, bright green bile rushed through the tube and into the empty bag. Quickly, the bag began to expand with this almost Kool-Aid green liquid until it was completely full and I needed to attach another one. The second bag only filled up a third of the way, but the color of that bile still haunts me. I couldn't eat or drink anything green for months because it brought back too many memories of what I now know is inside of me. It was a huge relief to release all that distended pressure from my belly, but damn if that wasn't gross.
To be continued...
Saturday, July 7, 2012
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
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
Thursday, June 14, 2012
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!
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!
Sunday, September 18, 2011
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.
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.
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