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Illness

So difficile

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This time the photograph is of a butterfly. Large, heart-shaped wings spread from one border to another, yellow at the center and flaring out to white, specks of white between chains of black. The butterfly caught in flight somewhere over a field of waving sunflowers in some Midwestern meadow, far from here. The time before in another room the photograph on the wall was of a wheelbarrow, stuck dumb and motionless out behind a rusted shed, in a patch of weeds with gauzy heads, sunken in the mud, so useless to my then sick and tired eyes. And the time before that, the photograph on the wall in my first hospital room was a cherry blossom, spread pink and fawning over a stone bridge and a finger of dark rushing water.

***

I was doing good. I almost made it. My CNA class had begun at Clarkson the first week in May. I was excited to be starting school again, taking the first tentative steps toward a career in nursing. But I was also nervous, especially that first day. I tried to do whatever I could to calm the anxiety. The weekend before I went and charged a few new outfits. Had my hair trimmed. And on the day of class I took my time showering, shaving, and getting dressed, making sure to breathe deeply. The drive to campus was direct but leisurely-paced. There was plenty of time. Throughout all of it I reminded myself of that: that there was no rush, that I could relax, there was plenty of time. But despite all of my efforts, it seems around this time, that first week in May, when my colitis began to flare and when I began the slide that has put me in the hospital again, for the third time this year, where nothing is permanent, and familiar faces come and go and sometimes are never seen again, and even the photographs on the walls change when you’re not looking.

***

Things became complex, confusing, right away. I met with Dr. Ward at his Lakeside office one sunny afternoon in mid-May. We talked about our plans for treating my colitis flare, only just beginning to get severe by then, and he decided we would increase my Humira shots from bi-monthly, which they had been since I first began injecting myself in February, to once every week, on Monday. I left his office feeling hopeful. “Don’t worry about insurance,” he said, mumbling something about medical necessity and writing a letter to the assholes if the need arose. But still the symptoms of my colitis flare continued. In addition to the usual therapeautic measures of starting a Prednisone taper at 40 mg., easing mesalamine suppositories up my ass every night, and hoping for the best, I also went home with a stool kit and a Hat for the purpose of testing for C. diff.

***

I already knew a little about C. diff. The bug’s full name is Clostridium difficile. It is a gastrointestinal bacteria that causes infectious diarrhea and is kind of renown in hospitals and other healthcare environments for being very persistant, hard to beat. It’s not necessarily something a person “gets” more that it’s just part of the normal intestinal environment. It only becomes a problem when it is allowed to flourish and get out of control, like in the body of someone like me—with a constantly, chemically-supresssed immune system. People in healthcare, and those infected, generally always cite the odor as one of the first things you notice about an active infection.

Earlier in the week, when I had been in the middle of my clinical rotation at a veteran’s home as part of my CNA class, C. diff actually came up during our group’s end-of-shift conference discussion. Two of the girls in our group of nine had cared for a resident with C. diff. Being their first experience, they complained and joked about the odor. When my own test came back positive for the infection, I just assumed the peculiar smell I’d been getting whiffs of had been last night’s leftover chicken, or just another wonderful side-effect of Prednisone.

“It’s super hard to treat,” said Brody, another of the nine in our little clinical group, and the only other guy in the class besides myself. “They have to do like an entire poop transfusion.” Brody was a nursing student. When he talked about the treatment for a C. diff infection he made it sound to the rest of us like if you had a runaway case of the infection the only way to get rid of it was to clean all of the brown stuff swishing around in your body with brown stuff that was newer, cleaner, and relatively sterile—and most importantly, not infected with the dreaded C. diff. Brody was kind of the class’s clown. Long, surfer-blonde hair and beard, a muscled, former-Marine’s physique, and very outgoing. A few of the girls in class liked him early on. By the end of our clinical rotation I also had come around and could see he was a good guy. But often we all just laughed and shook our heads at some of the odd things he said, like the C. diff poop transfusion, never completely sure if what he said was accurate, and could be believed.

***

Throughout May, Dr. Ward had me stop the Humira pen injections while I continued Prednisone and a two-week course of a powerful antibiotic called Vancomycin. My condition improved and I eventually beat the infection earlier this month, but at times during treatment I strugged to see that I was improving. Despite all my best efforts to keep my weight up—drinking protein shakes after workouts, drinking at least three Ensures a day, and in general stuffing as much high protein, quality food in my gut as possible—I still watched my weight slide from 217 down to what it is currently, 203—just ten pounds shy of my lightest, and worst, coming out of the hospital back in February. And if I’m honest, and maybe just because I’m vain, and maybe also because I just want to be a big, sturdy-looking, muscly guy again, watching the slow deterioration has been the hardest thing. Most of the loss has been water weight at this point. My arms have thinned out, my shoulders have become knobby and kind of cut up, and at least the muscles in my upper back aren’t so shy anymore, but it’s all a lanky, emaciated look, and I’m just so tired of the sickly appearance, even if at this point it might still be all in my head.

***

And so where I am now—not such a surprise maybe, but in the hospital again. Rooming at the always-luxurious Bergan Mercy Medical Center, on the Med/Surg floor where I had spent thirty days back in January and February, and where I first met Misti and a lot of other wonderful people and more or less decided I wanted to be a nurse someday, hanging out with Al the IV pump with a bag of D5 hanging overhead, getting rehydrated and well enough that surgery next month is an option. Because I’ve decided I can’t really do this anymore if I hope to have a normal life and a good career. I can’t allow my colitis to have the influence it has had for the past two years, for the roller coaster of these flares to continue to come and go as they choose, for my weight to slide and my health to fall apart to the extent that I am always starting over, picking up the pieces and rebuilding. So I told Dr. Ward, I want it out. Cut the colon out of me, and if some kind of anastomosis isn’t possible, if an ileoanal pouch isn’t possible then I’m fine with a colostomy bag stuck to the side of my abdomen for the rest of my life. And I have reached the point in the process of this disease that I honestly am. Because the kind of life I have right now, in and out of the hospital, on the toilet between twenty and thirty times a day during the meanest flares, unable to sleep because I’m up five times during the night, is not really a life at all.

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Discussion

5 thoughts on “So difficile

  1. I read your post, Jon. Just when you think it can’t get any worse, right? I can see how you have come to that conclusion, it can’t be easy to deal with colitis flare-ups, then get c-diff and now back in the hospital. You’re a young guy, your life ain’t over, even if it sometimes feels that way.

    I can’t imagine how tough it must be. I had c-diff though, a really severe case which netted me pseudo-membranous colitis, I think they called it. I know about the Hat. God. And I know about fecal transfer, that’s real. It was an option. And I did the Vanco route. They knocked it out, I came home from the hospital and had to go through round two. Btw, I caught it in the hosp. after back surgery and antibiotics. But enuf about me…

    I’m glad you have writing. You’re good at it. I read your bio, so I know you’re writing this blog mostly for yourself, to help you figure out some stuff. Looks like it’s working. Whatever you decide to do, healthwise, just be sure you do your homework, get the best dr. you can, and do all you can to get and stay strong. I am thinking about you, sending good thoughts your way.

    Take good care, Jon. Good as you are able.

    -kk

    Posted by kkellie | 06.21.14, 11:21 pm
    • Hey Kkellie,

      thanks for your very thoughtful reply here. Really appreciate it, & you for reading. I’ve heard about pseudo-membranous colitis before; while I was talking to a rounding surgeon he mentioned it being one of the things they wanted cleared up before any colectomy surgery. Another gift from the terrible C. diff, apparently.

      Still in the midst of homework and choosing the best surgeon. Upcoming appointments with my GI doctor, a consultation appointment to consider all options. I think at this point I am just going to have them take it all out of me. No more colon. Sounds dreadful, maybe, to the vain out there, but for me personally I have never had good luck attaining remission for longer than six months. And I am so so so tired of the drugs, having a supressed immune system all the time. I am a pretty healthy guy at the moment, eat well, and getting an infection like C. diff is a bit of a wake-up call. Sometimes I think what would have happened if the infection had gotten more severe, or if I’d been unlucky enough to get another infection, like pneumonia, on top of an already active and out-of-control infection. Ten years down the line I won’t be as resilient, and I can’t see myself (successfully) dealing with these problems. As the years pile on, so do the potential complications.

      So, getting past the fear of the surgery itself, I just think it’s time. I think it is smart and wise to do it now.

      Posted by Jon | 06.24.14, 8:32 pm
      • Jon, you are welcome. You got me going, I read some stuff about taking out the colon. It sounds like doing that would bring you blessed relief. Did you read this yet? http://www.ihaveuc.com/update-one-month-after-colon-removal/comment-page-1/ I don’t know if the author wrote updates beyond that one, but it was honest and informative and a lot of people responded. Might be something to look at for you.

        Sometimes we find ourselves in a place we don’t want to be, having to make decisions we don’t want to make. I was there earlier this year, I think that’s why I feel copacetic with you. My symptoms were miniscule, barely noticeable but enough for me to see my gyno guy. Next thing I know, I have uterine cancer. So body parts had to go. Actually, that’s not true. I could have done nothing. But I decided to take control, do this for me, for my peace of mind. I was scared sometimes and sad other times. A couple of times I slipped into that why me stuff. But ultimately, I got mad and wanted that shit GONE and was okay with the surgeon taking out everything that could poss. be compromised.

        They got it, it’s gone, cancer free. And the relief is palatable sometimes. I had a great surgeon, I hope you really do that homework, that’s one thing I noticed on all these websites, John Hopkins and all. Get somebody who knows their stuff inside and out. No pun intended. I hope you have a great support system, that will surely help.

        Anyway, good, good luck to you, Jon. May you find lasting health and lasting peace.

        -kk

        Posted by kkellie | 06.24.14, 10:03 pm
      • kk,

        sorry for the delay in responding here. My spam tracker was a little too eager, it seems, and filed this (and several of your other comments) away, never to be seen again. But I rescued them and read them and I am very glad I did. Thank you for the website recommendation; I shall check that out soon. Homework is slow, still something I need to do more of. Thankfully I am out of the hospital (ten days out) and feeling better. But the hard and deceptive thing about feeling good is that it makes a life-altering choice like surgery seem more faraway and daunting. I have to constantly remind myself that the way I feel right now is essentially an illusion, spurred on by weekly shots of Humira and a moderately high dose of Prednisone, which my GI doctor likes to say (and which you probably know already) is a terrible, terrible drug. So, trying to keep the resolve over here.

        Sorry to hear about your own health issues. It’s never fair, is it. But we do what we can, and in a sense, I suppose, it is in the struggle and overcoming of challenges that we find something in the dirt that shines, even faintly.

        Posted by Jon | 07.01.14, 8:14 pm
  2. I’m glad you plucked my responses from cyberspace. I am a luddite so half the time I’m not sure if I did something to screw up something else.

    Anyhoo, ready for words of wisdom? Heed the wizened old crone, she knows what-of she speaks: If you experience it, you experience it. In other words, if you are feeling better, that’s probably a good thing.

    I hope whilst you are feeling pseudo-well you do that research, find a great doctor. That is, if you are going to go through with that surgery. Which is daunting and life-altering, like you said. I don’t envy the decision you are considering. Just hoping you make it with a clear head. We never know what’s waiting around the corner, might be bad but it might be good. Maybe, really good.

    Fingers crossed, Jon.

    -kk

    Posted by kkellie | 07.01.14, 10:35 pm

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