It has been two weeks since I spent the night being tortured in the hospital. It’s been a little less than two weeks since I had to fight for the right to have the feeding tube removed. I have to admit, it’s been an odd couple of weeks. It seems surreal, looking back on it. I am caught between bitter laughter and horror, trapped in a place of mixed emotions and fear of the future.
On the positive side, I am tube free. No matter where I have to go from here with this illness, at least I am no longer living with something that was a continual threat. My days are not filled with the whir of a pump, the scent of my stomach and the formula and the continual pain that came with the tube. I’m not sure if everyone with a feeding tube is in pain all the time, or if it was just because mine was never right—it doesn’t really matter. What matters is that the pain from the tube is gone. As I have said many times, this is a subjective story, and I can only relate my own path. For me, it was pain every moment the pump was on, and when it came time to flush it—it got worse. It’s the little things they forgot to mention, things like the feeds lasting twelve hours a day (fifteen the first three), things like the continual pressure and pain. And, at least for me, fear that anything might move it out of place.
For now, that is behind me, and I am reveling in my freedom. I am enjoying a shower without worrying about the open hole on my abdomen. I am looking forward to a bath sometime soon. I love being able to just get up and take a little walk outside the office whenever I want without going through the ritual of disconnecting from the pump. I am loving the fact that the choking sensation I had the whole time is gone. Sleep is easier, I don’t have to sleep under a tray to keep my cats off the tube anymore.
Freedom—but freedom really is another word for nothing left to lose.
I know—that’s trite, cliché—but it’s also true.
The tube was put in not just for the gastroparesis, but to give my esophagus a chance to rest and maybe even stop the spasms that haunted my days. I had high hopes, but now, two weeks from the tube, I can feel my chest muscles getting tight again, I have to double or triple swallow some things. The spasms are coming back. I suspect they will be back with a vengeance, although I am focusing every positive thought in my body to stop that. I don’t want that pain back, I don’t want that terrifying feeling of not being able to swallow even my own saliva. I really don’t want to have my esophagus stretched again, although I know it’s just a matter of time.
What do I do now?
I have my Vitamix back out. I have a juicer. I have high quality protein and one of the best liquid multivitamins on the market. Vigilance has become a part of everyday life again. The worrying reality of the reason I agreed to the tube in the first place hanging over my head. Can I maintain my health with these tools? Can I get enough nutrition and calories for my body to work correctly? I can’t answer that.
I am going in on Tuesday to discuss all of this with my gastroenterologist. He took the time to call me yesterday—he was out of town when all of this happened—and he read my blog. So he knows. I think he understands why I can’t face a feeding tube right now. The question is—with my esophagus already starting its dance again, where do we go from here?
What happened has left me deeply wounded—physically and emotionally. I am free of the physical component. The hole is closed, leaving nothing but a dark purple scar surrounded by the scar left from the burns the adhesive caused. Even so, the specter of it will haunt me for a long time. The emotional wound hasn’t even started to heal, the edges are still raw and bloody. I seem to be able to control the overwhelming emotions so I am not crying all the time—or I can be patient with the world around me. I am trying to find a balance, but right now, nothing is in balance.
Am I really at the point of nothing left to lose? What is the next step? And can I muster enough trust to take that step? I don’t know.
What I do know is, whatever it means in the long run, today—this moment, I am free.
It has been a long day, as many people know. I have spent it fighting for my right to life, for my right to make choices about my own body. The fight has not gone well. After hours and hours of being spoken to as if I am a child, an idiot or a madwoman, I have been driven into a huge corner. I have been fighting to have the feeding tube that caused me such agony on Friday/Saturday removed. I have been told, over and over, that it is not my choice to make. I have had people explain to me that feeding tube are important and not lightly placed. I have responded with a clear and concise answer: Yes, I know, but anyone looking at my records can see this feeding tube has been a nightmare since day one. My body does not want it in there for whatever reason.
Believe me, I wanted it to work. You all know how I agonized over the question of finally saying yes to the tube. You all know how I was terrified of what it meant, but still proceeded with hope. When the very first tube came out of place less than twenty-four hours after it was surgically implanted, I should have known. By tube four, it had become some kind of horrible joke and I have felt like I was a character trapped in a sadistic writer's fanfic.
After what happened on Friday/Saturday I have been afraid to move for fear the pain will return. I have been afraid to blow my nose. When I use any muscle even close to my abdomen, gastric contents bubble up and out of the hole. The whole thing is only being kept in place with tape and I have horrific wounds surrounding the stoma caused by the tape. The tape that is the only thing that is keeping this tube in place. The only thing that is semi-sealing a wound in a part of the body that does not really deal well with wounds.
I have made a decision. It will cost me, maybe not everything, but a lot. I have been forced into a corner by the medical establishment and left with nothing.
I get to go in tomorrow and the on-call for the GI group will "look" at the results of the initial test before replacing the tube and "If I am adamant" they will remove the tube, but only after I sign off that I am having it removed against medical advice. Yes, you read that right. I am being force to essentially say "I know this is wrong but do it anyway."
This is ludicrous. All they have to do is look at my file. Not even the whole thing, just from 17-June when the first tube went in. Any doctor, even one who doesn't know me, can see there is something very wrong with this whole situation. body has some weird, undetected flaw. Maybe it was done so wrong in the first place, this particular "track" was forever compromised. I am not ready to let them cut me again, and try another site. I can take a small amount of food and water by mouth--as anyone at my doctor's group could find out by opening my file. And yet, my rights are turned into a punishment. You are naughty and you must admit you are naughty before we relieve your suffering.
I am shocked, horrified and dismayed. I feel like I am being held prisoner by all this. Yes, held prisoner. I spent the entire day NPO (no food or water) just in case it could be fixed today. Instead I waited. I am now seriously dehydrated and hungry. Did any of them even consider the fact the tube has been unusable since Friday? That there was no way I could get nutrition through that obscenely out of place and broken feeding tube assembly?
Will I have it out tomorrow? Yes. Those of you who read my blog know why, for those of you who haven't--this tube has become a nightmare. I live in terror of it coming loose, of it slipping out of place. Now I have the added terror, a word I do not use lightly, of the balloon coming out of place again and putting me through the hellish torturous agony I was made to suffer over Friday/Saturday.
I am disgusted, afraid, upset and so, so angry that they are forcing me to do this. It is so wrong. What it means it I really don't have a voice in my medical treatment. I am not a valuable part of the team that treats me. They call the shots, they make the decisions and I? I get left with nothing--well not really, I get left with horrific anxiety, a fear of ever walking through the doors of a hospital again and enough PTSD to keep a small army going for years.
Over the last few months, I have questioned so much about life in general and my life in particular. I have fought my tendency to laugh things off and really be honest with myself—and others—about what’s happening in my life. It’s been a difficult thing, actually, making a joke and ignoring the horror is easy and I know it can help people deal with the things that are ugly, scary and horrifying until they are in a safe place to let go and feel those emotions. I feel like I’ve been living in the trenches lately, trying to laugh things off as my health issues got scarier and the choices harder—even as I written this blog, even as I have spoken about my fear, of death waiting for me.
Finally, I’ve hit a wall, I have not only seen the lurking Reaper, but perhaps had a glimpse of hell.
Friday started as many days start. I had not slept the night before, I had a vague sense of impending doom and pain lurking in the background that was enough to keep me from sleep. Earlier in the week, I had called my gastroenterologist because I had the feeling something was wrong with my feeding tube. They took and x-ray and decided it was all good, although after I spoke with my doctor he did decide to order a fancier x-ray. In the second of a long series of blunders, even though my doctor had ordered the fancy x-ray on Thursday, his nurse didn’t get around to ordering it until late Friday, which meant I would have to wait until Monday. It was just a simple mistake right?
So, back to Friday. The impending sense of doom was with me all day, as well as that pain, lurking in the background. It wasn’t so bad I had to stop doing what I was doing, but I was out-of-sorts and grumpy a lot of the day. At six, everything changed. I went to the store after work. As I walked in the background pain moved to the foreground, and I left the store half an hour later, I was hunched over, barely able to walk. When I got home, I sat on the couch, trying all the excuses in my rather large lexicon of excuses for why the pain was so bad. I’ve pulled a muscle. I’ve bruised myself. I twisted wrong. I have so many, I think I ran through most of them. I finally gave up at eight thirty and went to bed, hoping lying down with my cats would make it better. It’s been the solution many times before.
Not Friday. As I tried to swing into bed, the pain went over my threshold and I screamed. I have screamed in pain maybe three or four times in my adult life. One I have written about here, when I was awake and feeling during surgery. Another was when a rather large woman leaned against a toe that had been stitched back together. But through most of it, I just ground my teeth together and went on. Through broken teeth and broken toes and even labor, I never screamed.
Friday, I screamed.
After fighting the pain for almost thirty minutes a wise friend convinced me to call my doctor’s after-hours line. I told them I had horrible pain by my stoma (the hold where my feeding tube goes into my body). I told them my tube was flushing correctly, but I was in terrible pain. They told me to go to the ER. No arguments, no waiting until Monday, this was serious. Go.
It takes a lot for me to go to the hospital these days. After so many bad experiences, I avoid it like the plague. Friday, though, I hurt so bad, I knew something was organically wrong, something so big there was no way the doctors could miss, my doctor had ordered me there, it would be okay. Right? As we drove to the closest hospital, the pain was getting worse and worse. I had tears pouring over my face, there was no way to stop them. The pain would be so obvious even to the hardened workers in the Emergency Room I would be okay. Right?
Wrong. So very, very wrong.
When I was finally back in a room (after two hours in the waiting room, the torturous pain getting worse by the second) and the nurse ask about my pain level--which from one to ten at that point was somewhere around fifty—and she brought me one small dose of morphine and Zofran (an anti-nausea drug). About half an hour later, the doctor came in and asked me about my history of addiction! No “how do you feel” no “what is your pain” just “tell me about your history of addiction.” Grinding my teeth together, I told her I had no history of addiction, I wasn’t there looking for drugs. In fact, I live in a state where marijuana is legal and if I wanted to get high, there were certainly better options than the ER. She ordered a check of my feeding tube—even as I tried to explain the tube was fine, I’d just had it x-rayed Wednesday.
Still, they went with that plan. The nurse came in to flush the tubes—but apparently had never done it, and ended up spraying both of use with water. She finally got it and, surprise surprise it was fine. They sent me to x-ray and the doctor came in and said my tubes were in the right place. I said I know, that doesn’t explain the pain. And she said it was not her job to give me narcotics for undiagnosed pain, and I was going to be released.
I dug in my feet and said no, and they left me alone—for a very long time. I buzzed the nurses and they ignored me or dropped by with platitudes. I asked for some anti-nausea medication because vomiting with a feeding tube can be bad and they brought me not the kind I knew would work—because “Honey, it could sting when we give it to you”—but something else that did absolutely nothing.
That moment was the first time I would utter the words out loud. Words I had been thinking for hours of torture in a hospital bed when relief should be given The words? “If you release me now, the pain will kill me.” The nurse smiled and left. Another hour of no one checking on me and the physical pain so out of control I had a glimpse of what medieval torture must have been like. I wondered, somewhere in that pain-hazed world, what kind of witch or other outcast I was to deserve the torture being heaped upon me. For that is what it was, torture—deliberate, calculated torture. I was in so much pain I could barely breath, I could barely think and every time I saw someone I told them how much it hurt. I told the x-ray tech, I told the nurse, I told the doctor and the whole night it kept getting worse. The morphine hadn’t even touched it. It hadn’t even given me an inch of distance from it. I was getting desperate.
Smiling nurse came in at three and said “Are you ready to head home?” I’d had enough, I had tried everything. I had to get someone to hear me. I was dying, and I knew it. I looked he straight in the eyes and said “If you send me home in this pain I will kill myself as soon as I walk out of this hospital.” Well, those are magic words. They can’t release you if you have reported something like that. She said she would get a counselor. It was something.
Another hour of torture and the counselor finally came—remember this is four in the morning on Saturday, I had been at the hospital since ten Friday night—and she sat down all serious and earnest. I told her of feeling marginalized, I told her about torture, I told her about wanting to die. She finally asked “What can I do to keep you from killing yourself?” I told her all I wanted was someone to listen, to check and see what was wrong. I live in continual pain and this was so far beyond that I couldn’t handle it. There was something wrong. She agreed and disappeared. About fifteen minutes later the doctor came in and said she would send me for a CAT scan—although she wasn’t going to waste contrast on me—and she knew it would come back normal and I could leave. (If I’d had the strength, I think I would have smacked her smug face.)
Off I went to CAT scan, after six hours of torture beyond imagining. The techs had to help me on the table, I was incapable of moving. They had to lift me back on the bed. I screamed when they laid me down to do the scan. It was horrid, but I knew it would answer the question, it would make them all see. They took me back to my room and I was left in my silent vigil of agony. I could feel my heart racing and wondered if it would give out before anyone listened. I cried, in pain. I cried wondering if I should have gone home, I was beginning to question my own sanity despite the horrific pain. Maybe they were right and there was nothing wrong. NO! I knew there was something wrong and I held onto that truth like a drowning man clings to the tiniest branch in a storm-swept sea.
It was another forty-five minutes before the doctor reappeared. Her entire demeanor changed. She put her arms around me and told me “Thank God you persisted.” She was crying. There was something wrong, something very wrong.
The feeding tube system is held in place by a thing they call a balloon, and while my tubes were in their appointed places, the balloon had decided it wanted to migrate. What caused the horrific and increasing pain was the balloon attempting to crawl out of my body via my stomach wall.
Luckily, they caught it in the nick of time, it could be fixed—well it could be sort of fixed, the doctors who deal with that aren’t in on weekends but the ER doctor did her best and got it into the right place. It’s not held together correctly, it’s tape that’s holding everything in place right now and my stomach is draining out through the stoma.
I know I should be relieved the torture is over, but I’m not. I’m angry. No, it’s not anger, it’s rage. It’s fury. I was screaming in pain, I was tortured and I am supposed to be happy they fixed it. I am glad the pain is over, don’t get me wrong, but it took how long? I was humiliated. I was treated like a drug addict. They spoke to me like I was an idiot. I lay in agony for hours with begging for water, no help, nothing. I am supposed to let that go because they fixed it? I can’t.
I have been betrayed by people who are supposed to help one too many time. Even my own physician was a little put out with me last week as I tried to convince someone there was something going wrong. I feel small and lost. The humiliation heaped upon me hasn’t dissipated with the truth that I was right. I have lost everything. I can’t look to that sector for answers. I was tortured at their hands and I cannot trust that which can so blithely allow anyone to suffer like that. It’s gone—and with it hope in some ways.
Friday night I screamed. My life has changed forever.
When does it finally become enough? When do you finally ask it all to stop and cry “uncle”? I’m at a place where I am asking those questions. Why? My feeding tube is loose again. As I write this I am fighting that strange sensation that comes with the displaced tube. I am fighting nausea, knowing vomiting is the worst thing I can possibly do in this situation. I emptied my stomach—which is every bit as gross as that implies, but the nausea is still there. It’s caused by the tube that enjoys wandering.
I realized it was out of my intestine about one this afternoon. I think I actually knew earlier, but I couldn’t face the reality of what that meant. I found my courage and checked—I will spare you the details—and discovered the key factor that meant it was in my stomach again. I called the doctor and then played phone tag all afternoon. I spoke with one group who is unsure what to do—replace it again or move the site. In other words, cut me open and try again. Finally, the call came back from the provider and for some bizarre reason, they scheduled me for a simple x-ray. I suspect the nurse did not relay the bulk of my message again (see previous blog) and the doctor assumed I was just being overly sensitive.
I know I am not. I know I am looking at getting another tube, or another site—or maybe another solution. The problem is, we are running out of solutions. I am at the point of questioning why I even allowed this in the first place. Sure, I was slowly starving, but maybe I could have figured something out. Yes, there were other reasons as well, but maybe I could have figured those out too. I trust my Gastroenterologist. I know he wouldn’t have recommended this step lightly. I know he could never have foreseen this mess.
It’s just becoming too much. I feel like the patient in a hospital drama. No, scratch that, I feel like a character in a fanfic story where the poor characters have hurt piled on hurt until you wonder how they can possibly come out of it whole. I admit I’ve written a few of those over the years, and more than once they didn’t come out of it the same person they were going in. How can you be unchanged?
I don’t know if I can face it again. I don’t know if I can live anything like a quality life with the shadow of a new feeding tube every week or so, which is what is happening right now. I am struggling with the quality of life versus the quantity life question right now. I’ve heard from, more than once, “If you were a dog, they’d put you down”. That is not comforting, especially when I know for a fact for most people that would be true. They would end the suffering of the poor animal that couldn’t eat, that was in continual pain, that was nauseous all the time, that couldn’t star correctly hydrated. Where does that leave me?
There is no cure for gastroparesis and esophageal spasm. There are “comfort” measures—like the amazing migrating tubes. Only they are not comforting. They are making me question my own decision making. They are making me ask myself “What is the life I want to live?” It’s a hard question. Where do I draw the line between living a quality life and living a longer life?
Right now, though, all I want to do is cry uncle. I want to find the one writing this story in the comfort of their office or bedroom and tell them to stop. Let the hero rescue me, let me drive off into the sunset with hope and the music blaring. I know that is unrealistic, but sometimes it comforts me to think it could happen.
Especially now. What do I do? I don’t know, this time I really don’t know.
Something changed for me last week. I have been ill off and on for the last ten years and now I have the constant companions of gastroparesis and esophageal spasm. I’ve thought a lot about life and death through these years. I’ve thought about the slow decline that a body can go through and how eventually it can fail. Even as I thought about it, I never really thought the word, never tied death to it all. Yes, I know people are dying, I’ve admitted fear as I have faced repeated placements of a feeding tube that won’t stay put. I’ve handled trips to the ER in pain, just wanting it all to stop. But I never really looked at that word as applying to me unless I made a drastic choice.
Until last week.
Someone else actually made the choice. To make a long story of medical ineptitude short, I came close to partying with the Reaper. Very close.
It started with feeding tube placement number five (in as many weeks). The doctor who did the fifth one added something he felt would help keep the ever-migrating tube happily in my intestine. He was a DOCTOR so I trusted him. When I was back the next week for number six, the something was left in place. Since that fifth tube, I had been feeling worse and worse. After tube six, I headed downhill fast.
I thought it was dehydration, it had been very warm, and it had been hard to keep up on the liquids. Finally, I got to the point where I felt so bad, I called the doctor. It’s hard for me to make a call like that. I worry I am overreacting, I worry there is nothing wrong. After going back and forth with a “floater” nurse, my doctor’s regular nurse finally called me and I explained what was going on and she seemed confused. Her answer—come in ASAP.
I did. I headed in, feeling awful, feeling like I MUST have done something wrong. It had to be me, right? And more to the point, it was really silly to bother the doctor, I was just dehydrated and I needed to be stricter about getting water into my tube every half an hour or so.
When I was ushered back to the exam room, the nurse took my blood pressure and disappeared. When the doctor came in, I came face to face with reality. It wasn’t me, it wasn’t silly, I wasn’t bothering the doctor—no what I was doing was dying. Right there in the exam room with the ugliest chair on earth, I was facing the Reaper.
I remember apologizing for not figuring out what was going on, and my doctor calmly telling me it wasn’t my fault. The doctor responsible for it was the one at fault. He was the one who should have figured out he was compromising my body. It wasn't my fault. My doctor repeated that many time as he listened to how I felt, looked at the records and got that scary calm the medical profession gets when things are truly bad. I’d seen it on the face of nurses and doctors caring for my mother in the first days after her stroke. That detached calm that lets them function in the face of death.
And there it was, on the face of my own doctor, one of the very few I trust. Someone who always tells me what is going on, no matter how hard it is to hear. He has been frank about every step of this journey. His support has been vital in keeping me sane, and there he was all calm. It worried me. More than that, it terrified me. It’s only because I am stubborn I hadn’t collapsed, if I’d ignored it for another day I WOULD have collapsed. Greetings, Mr. Reaper.
I’ve thought a lot about where this illness will lead. As I live day-to-day with nausea, with the feeding tube that in a way now controls my life, with pain. I’ve thought about how bad things can get as the list of people dying with gastroparesis grows. Funny, though, even as I thought about it, even as I mulled over the period at the end of the sentence, I don’t think I every really saw it sitting there at the end of my sentence. That word.
Now I do. It is very real. It is right there and it can be something as seemingly innocent as that something. I’ve heard everything is brighter and better when you come through a serious situation. I’m not sure about that. Yes, I hear the birds and smell the flowers, I enjoy a cup of coffee when I can and listen to the rain on the roof. I always have, and that will never change. What has changed is almost indefinable. It’s a shift, a change in the horizon.
I’m still here. I plan on being here, I have admitted I am afraid of where my illness will lead, but I’ve never looked that closely at the face of the Reaper, never thought about how close he really is to me. Waiting, sitting in exam rooms and the office, the couch at home and the bed I sleep in.
Many people have told me “everyone dies” to comfort me, or “sure, this is going on with you—but I could get in a car wreck tomorrow.” All that is quite true. In fact, I could get in a car wreck tomorrow, but that is not something you can worry about too much. I live within view of a volcano, and not too far from another that blew its top in 1980. We’ve had earthquakes, I was in a plane on the edge of a tropical storm and I’ve lived in tornado country. I don’t worry about those things. I don’t see them as threats, they just are.
This illness is a threat. It can be subject to the whims of a simple medical mistake. Maybe I need to think of it as a volcano or an earthquake, but that is hard as I listen to the pump on the feeding tube. This is every day, every moment.
Are things brighter after nearly meeting the Reaper? The world is always bright, full of life and beauty. I came away from that moment thoughtful, finally looking at that sentence, at the ending that is sitting there. Where the end is written I’m not sure. I just know that now that word is there staring back at me.
Multum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days.
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