I spent the majority of the day in the hospital yesterday, dagnabbit.
Sometimes it seems that I get sick or have something go wrong and when I recover, it’s time to set my stopwatch and wait for the 00:00 to hit and then it’s back to the nurses and doctors. My 00:00 came the other night and yesterday, I could wait no longer to take my watch to the ER.
Starting last week taping TV, I felt this a strange, new pain. (It’s always exciting to experience a symptom for the first time! It’s like making a new friend.) There was intense pain and a strange gripping, clenching, internal dripping (??) feeling around my old ostomy site. I’ve got a fabulous scar to the right of my bellybutton and all around it, tenderness and a disturbing hardness had arrived. And did I detect streaks? Under the skin? Oh, dear. Oh, boy. It was worse when I bent over to pick up my house keys, which happens all the time for some reason.
My new friend Elle (a quilter, no surprise) told me when I got to DC that if I ever needed medical care, to call her immediately. “I know from ER trips,” she said, having taken various members of her family on a regular basis. “I’ll be your advocate. I know about that, too.”
I really, really hate calling in favors, but I did. Elle and baby Miles took me to Sibley and I’m happy to say I received excellent care. Surgeons poked at me, internal medicine doctors prodded me, CT scans were ordered, and pain medicine was blessedly dispensed. I barfed a lot, too. We were there for eight hours and Miles was an angel. He also was useful: when Elle would go out of my room to ask for something, the staff was like, “Oh!! Adorable baby!! Yes, how can we help you? Adorable baby!!”
Results were inconclusive. The surgeon thinks it’s sutures working themselves out, maybe adhesions shifting around. But I got bonus diagnoses: I have a small gallstone and a 2” ovarian cyst on my right side. Wow! And I just came in for what I thought was a piece of my intestine ready to quit on me. I told my surgeon about my lipoma, too. He said it was no big deal and laughed when I told him how I found it.
All you have to do is get out of bed in the morning. Things will happen to you. Experiences will arrive. What will happen today? Time to wake up.
As the well-wishes and words of kindness came in last night/today regarding yesterday’s post, I felt subdued and grateful. I also became concerned that the sharing of my UC story thus far was potentially taking up too much air time in people’s heads, thoughts, prayers, etc. I shared the first half of the timeline with a desire to inform, possibly assist, and maybe even entertain (seriously, you can’t write this stuff.) But when the compassion came at me from all sides I suddenly felt guilty that I had directed all of this energy at myself when really, we’ve all got botched j-pouch surgeries. We’ve all got a health crisis.
We are all temporarily abled. That’s not just a politically correct catchphrase: it is one of the truest things I know. Our bodies are systems; systems fail. We are organic matter; organic matter gets infected, infested, and eventually rots away. There’s nothing to be done about it and to preface it all by saying, “Sorry to be morbid, but the funny thing about bodies is…” is to keep the yardstick in place that distances us from the reality of our rather absurd situation. It is my fondest wish that every person reading this is full of vim and vigor from their first day to their last, but it’s more likely that most of us will deal with significant health issues somewhere along the trek. Sooner, later, or now.
So hang my tale: we all need compassion. By virtue of being human, we all need loving kindness. It’s hard down here. And that’s when we’re healthy and well! Beyond that, many of us have diseases and afflictions that do not call for surgery and never will. There are those among us who are quite sick indeed but look perfectly fine. Those people need emails of encouragement, too. They need blog comments. And so it was that I felt I had gotten too much of the universe’s healing energy yesterday and today. I will send some along to the next fellow with your regards; maybe it will come back to you, as you also need it. Sooner, later, now.
With that, let’s dive down into the second half of what happened so far in my life, vis a vis being sick. When I returned to Chicago in ’09, things took a turn from awful to downright horrid.
Summer ’09 – My then-husband leaves for a year to train for the Army Reserves. A decision we made together proves disastrous. He was away, my entire world/existence was changing daily. A gulf formed that would never again be brooked.
August ’09 – I am declared well enough for the “takedown” surgery at Northwestern. The ileostomy (stoma) I had is poked back inside my belly and reconnected to the internal j-pouch. In theory, I should be able to continue my life now, albeit with a “new normal.”
September ’09 – My health rapidly deteriorates following the takedown. Turns out the leak has not healed. Waste is leaking into my abdomen from the pouch. I am hospitalized — can’t remember how many times — over the next few months. (Silver lining: I begin to make quilts for sanity preservation.)
October ’09 – “Bio-glue” is squirted into my j-pouch in attempts to “plug up” the leak. Bio-glue is what they use to glue heart muscles back together after surgery, apparently? While the glue does its thing, I am told “No food allowed.” A PICC line (my third; a mega-IV that is inserted via ultrasound into your arm and travels through a major artery to dump medicine/food directly into your vena cava) is placed and I am put on total parenteral nutrition (a.k.a., TPN, a.k.a., “feeding tube”.) Twice a day, I hook up a gallon bag of white fluid into a port in my arm and sit still while it is pumped in. I have several IR drains, as well. I am a ghost among men.
November ’09 – TPN and bio glue deemed a failure. Pouch needs more time to heal after all. I will be re-diverted. (Translation: I will get another stoma.) Surgery at Northwestern. This time, I get an epidural. A psychiatrist visits me in the hospital post-surgery and recommends I go on an antidepressant. I take her up on that.
December ’09-’11 – Life continues apace. My marriage falls apart. I continue to work as a freelancer, building Quilty and doing work in the theater in Chicago to take my mind off my health issues and my broken relationship. Bag leaks in bed, painful rashes, etc., are par for the course with the second stoma as with the first but it’s a known quantity, at least. I begin to practice yoga with obsessive drive: I make deals with the universe that if I get healthy enough before the second takedown a year from now, I will make it.
June ’11 – Second takedown. Northwestern. Epidural. Things go well.
Fall ’12 – After a shaky but decent year, things begin to crack. I have a fissure. I also have a fistula. (I leave those things to you to look up. Do not image search.) Various methods are deployed to deal with these issues. I work harder than I should, afraid at any moment of hospitalization. There are several, usually related to the fistula or flora issues in my ruined guts. I make a series of self-destructive choices. I am wildly productive.
Fall ’13 – The fissure has come home to roost. I am crippled with pain. An ambulance comes to my condo to get me on the worst of the nights; they break my front door. I get into a pattern where I know when the fissure is about to do its worst; I frequently take the bus up Michigan Ave. to the ER. Hospitalizations. Pain medicine. Lying to everyone about how bad it is. Describing the pain to someone, I say it’s “like having a gunshot wound that you sh-t battery acid out of approximately twenty times a day.” (I stand by this description.)
Then, up to now – Good days, bad days. I got a pain doctor who recommended an internal pain pump. This is a morphine drip, essentially, placed into my abdomen, which I then pump when I feel the agony coming on. I decline, not yet ready for another apparatus. Probiotics. Lost days. Days packed so full, no one will notice the ones when I’m useless.
Remember, this is the timeline of the health crisis. One only needs to look back at PaperGirl, or the issues of Quilty magazine or the shows, or the other shows, to see that life has been much more than just this list of woe and setbacks. Joy and wonder, and gifts abound in my life. Success and learning and all kinds of wonderful life has been lived since 2008. And there have been all sorts of failures and good, old-fashioned crappy (hey!) days that had nothing to do with any of the body stuff, too — that’s the real kicker. Good, bad, or otherwise, though, this timeline is a specter. My experience and condition don’t define me, except that both kind of do.
I am going to make cookies for Yuri now. Good grief! [Correction: Cookys! I meant cookys!!]
For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.
It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]
Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!
August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.
September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.
October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.
October 15th-ish – Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.
October 20th – Surgery. I wake up screaming. Insufficient anesthesia.
October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.
November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.
November ’08 – February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.
Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.
…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.
Second half of timeline tomorrow, if you dare. Get some cake, maybe!