Coping with Ulcerative Colitis

Credit: Hummuskiller

I am writing this as I am drinking four 450cc barium sulfate containers for an MRE. It's disgusting, and the Crystal Light is not helping.

I didn't realize that I had anything to work out mentally or emotionally with UC. It's mild, it's moderately controlled, and I'm used to big life shifts (getting a chronic disease doesn't hold a candle to becoming a doctor). But in the past few weeks I've had two experiences that showed me how lonely UC has made me, and have helped me.

I was on L&D and was getting ready to do a C-section. I clicked into her chart and saw that she had UC. It always makes me feel a little bit of companionship. The C-section was with one of our pricklier attendings, Dr. M. Of all our attendings, she is the most challenging: she once asked me if I listened to patient's lungs after I'd ruled out PE (hard to explain if you don't get that). As the section proceeded I nicked an arteriole. "Are your cases always bloody?" she asked derisively.

I decided to be silly about it, since the patient was under general anesthesia. "Very," I replied. "It's always awful." To my surprise, Dr. M grinned at me. Had I cracked Dr. M? We continued to banter back and forth as we opened the abdomen. By baby time, we were chatting amicably.

"Bummer that she had to get general," Dr. M observed as I anchored my hysterotomy repair. "It was her platelets, from her methotrexate. Come on," Dr. M went on playfully, "can't you tie better than me? Me with my arthritis?"

"You have arthritis?" I asked softly. Arthritis in a surgeon is a bit of a sensitive subject, because your career is in your hands. When you're mask to mask over an abdomen, few people in the OR can hear you, so I asked quietly.

I guess I
should have
this here for
me? Or Dr. M?

"My gosh, it's gotten so bad in the past few years," she muttered. "The colitis is better, though."

My eyes grew wide. "You have ulcerative colitis?" The word "colitis" doesn't go with the word "arthritis" unless someone is talking about UC, or a very unlucky and uncharacteristic type of Crohn's.

Dr. M. looked up from the field and met my eyes. "Yeah, I have ulcerative colitis," she said.

"Me, too." I said. I completely forgot I was operating, I forgot about anything except for Dr. M. Here we were, operating across from each other and on a patient with our condition.

Dr. M turned her attention (and mine) back to the fascia. "I remember once when I was a resident in the middle of a 72. We worked the whole weekend then. And there was a vag hyst to do, and I felt so bad that I asked the third year to do it. And she made such a stink about it."

I was amazed. A "vag hyst," or vaginal hysterectomy, is a gem among procedures for OB/GYN residents. For a senior resident to give away a vag hyst, she must have felt terrible. (Like, interferon-soaked, uncontrollable diarrhea and tenesmus terrible. Sort of like I feel now that I'm in the middle of the fourth barium dose.) I didn't say anything and we went through the rest of the C-section quietly. There was a companionship that didn't need words. I was flooded with a strange relief.

Someone else knew what is was like to have UC as an OB/GYN resident. Someone knew what it feels like to be rounding and to suddenly need to find a bathroom that people don't mind smelling. Several times as an intern I had over ten patients to see and in the middle of them I suddenly had to go down a flight of stairs and into a guest bathroom, the only one I know of where people won't complain about a BM.

The second experience isn't as much of a story. I have scishow and vlogbrothers on Feedly and clicked on this Hank Green video because it seemed medicine-related. To my surprise, Hank Green has UC. Unsurprisingly he has really smart things to say about it. That's all for now; I can't finish this last barium bottle, but it's time to get the MRE. (Thankfully, there's glucagon in the near future to make me feel better.)

C. Diff!

Every once in a while, the tables are turned and the physician becomes the patient. These times are typically very philosophical, because there is occasion for introspection on the part of the medical professional into medical care, psychology, and doctor-patient relationships.

A common problem on the medicine wards is Clostridium difficile diarrhea. Clostridium difficile ("C. diff") is an opportunistic bug that can colonize the colon without problems in normal people. When these normal people become people on antibiotics and the antibiotics kill the rest of their normal colon flora, C. diff takes over the abandoned real estate and causes a nasty diarrhea. Why am I telling you all this?

Because every once in a while, the tables are turned and the physician becomes the patient.

When my GI doc told me I had C. diff over the phone, I almost burst out laughing. I'm at high-risk because of my work in healthcare fields and my UC, but I had never thought that I would get it. C. diff was for people in bed and super sick, with or without a rectal tube.

But, walking and talking and functioning (and wondering why I was having problems) I had C. diff.

Patients who have C. diff are placed on contact isolation. So, for the duration of my illness I wore reversed contact isolation: I wore gloves everywhere and gowns when visiting patients. It was a nuisance. Happily, several of my patients were on contact isolation anyway, so I didn't feel quite so silly in the buoyant yellow paper things they call "gowns."

I'm a little tired to philosophize. But it's interesting and humbling.

Fruits of the Flare-Up

1. This.
2. I discovered I need to be way more compassionate with patients. I had no idea the depth of the terms "malaise" and "fatigue."
3. I used to wonder how patients could stand just lying in bed all day, not doing anything. Weren't we boring them to death, like kenneled animals? Nope. Nope, when you're sick, you don't care. Bed is good, or as good as it gets.
4. Life is only about becoming more and more dependent on God. That is all. And even when all I could do was lie in bed and stare at the wall, I could still depend on God. So I was still able to become a saint, even with near-zero function. Wow!
5. In fact, it was easier to depend on God when I was sick. Now that I'm closer to better, I keep thinking I'm the captain of my life again. (The pill box is a good reminder.)

Plot twist!

I have not posted in a long time because at the beginning of this calendar year I became sick and was eventually diagnosed with ulcerative colitis (UC). This post is long, but it contains no gross images! Yay!

On the first day I had symptoms, I formed a little differential. By day three at the latest, this thought had occured to me: "huh; IBD would give me this. UC, to be specific. Could I have UC?" But for several reasons, I thought that was unlikely. The most prominent reason: I was not special enough. Patients were special people! They deserve special treatment, they have these big gifts from God, they're special cooperators with him in redemption.... I was not one of those people. I was just plain me, just one of the patients' helpers.

We had to memorize a chart like this as M2s.

I remember when my mom was diagnosed with a lifelong autoimmune condition, I thought: "Wow. God gave her something big. It's permanent. He's not taking it back, (barring a miracle). He must really want her help with someone's case." But I wasn't that special.

So for a week, I ignored the symptoms thinking that my subclinical IBS (which 60%+ of med students have due to stress and environmental factors) was just getting worse with the crazy schedule and heightened stress of IM. Or maybe it was because I didn't have enough yogurt. But then, things persisted; then, things got worse.

I knew I had to say something to my upper-level to explain why I was ducking into the bathroom and sitting down on the job so much. I didn't want to say anything. I wanted to tough it out and be invincible. But my conscience was pricking me: you're not invincible and it's pride to think and act like you are. Admit your weaknesses. It's humility; it's human; it's the truth; and it will explain why you're randomly in the restroom. But I could never find a good time! I was seldom alone with the upper-level; the other med student was always there.

At last, I had a chance. She and I were in the ER physician's work-room. The room had frequent in-and-out traffic and the walls are glass, but we were alone. In this relative and extremely transient privacy, I wrestled with my conscience.

"But I don't want to tell her!" I whined to myself. "It's just because of that new medication I started a few weeks ago."

"That wouldn't last this long," my better judgment pointed out. "You know that's not a side effect of that med. You're sick, it's the truth. You need to tell her. And this is an opportunity for humility. And somebody is going to pop in here any minute, so you need to act NOW."

I spoke up: "Say, Laura," I said timidly, "I need to tell you something: I'm sick. I just wanted to let you know that I'm not uninterested in what's going on when I leave...I just have to be in and out of the bathroom. A lot."

Well, then she did the inevitable reflex thing that I figured she would do and took a mini-history. ("What's going on? How long? Did you see someone? Do you want some Imodium?") And then she told me, to my great relief, that she knew I wouldn't slack off and that I was free to do whatever I needed to do to get better. "Take some days off," she urged.

"Take 'em while you can," chimed in an attending, because someone (of course) had come into the work-room. At least they hadn't heard exactly what my chief complaint was.

"I think I'll be okay," I said at the time (ha!). "I just wanted to let you know."

Fast forward a few days, and I'm collapsing on a chair as I pass by it while rounding with the other med student and his intern. I wasn't dizzy/lightheaded, but I was just so malaised that I couldn't stand up any more. That got people's attention. Interns have an even stronger reflex to take a history, so I had to tell her even more. It was embarassing; I know everyone is medically curious, but I would have liked to keep things closer to the vest among people I was working with.

And it was frustrating! As much as I wanted to be flat in my bed, I also wanted to be a good med student. And that day (the day I collapsed) we were going to observe a tracheostomy and some other cool stuff. Darn colon! </rant against my own organs>

I became alarmed when the intern said I should go to the residents' clinic and probably to the ER after that. "What?" I thought to myself. "Go to the hospital? For this? Whoa. I guess I could imagine my story in the top paragraph of one of those admitting H&Ps."

I ended up not going to the ER. Instead, I got a work-in appointment with my GP across the street. (We still went to the resident clinic, where two of the seniors took my blood pressure and took another HPI. And then a partner of my GP, with whom I later worked, asked a few questions that seemed sheerly to satisfy his own curiosity. Yeesh people. Shoo!) All this time I was very tearful, because I was very embarrassed.

At the appointment, becoming an inpatient came up again, as did the ER. I asked my GP to keep me as an outpatient, but my story still apparently bought me a CT. My GP wasn't in clinic that afternoon, but she told me to stay on the hospital campus until she phoned me with the results (in case she had to admit me?? The unsaid words were louder than the ones she said). My first CT went well. It really is a fast test, except for the hour you spend drinking the two doses of po contrast. They couldn't find a vein for IV contrast, so I just did po, and that stuff was tasty. (No, honestly. I gulped it, it was so nice. </digression about grape-flavored radiation>)

She called first about the bloodwork. "Labs are all normal," she happily told me. I was less happy.

See, it seems like every time I go to a doctor, they tell me that everything is normal. That's another big reason that I didn't tell anyone about my symptoms. Every time I come in: "Well, it doesn't matter." "Well, you just need more sleep." "Well, your bloodwork was all normal." Remind me that when I'm a doctor I'm not giving up until the patient feels better!!

So, once I heard that the labs were normal, I figured it was inevitable that I would get the "well, looks like nothing" treatment. But I really wanted it to be something! I was terrified that the CT would come back negative. While I waited for her call about the CT read, I attempted to nap in a dark, empty exam room. All the while, I was thinking to myself. "IBS. It's IBS. I'm making all this fuss over something without pathological findings. Labs normal, imaging normal. Don't even think about biopsy. I'm wasting all this money and time and people are all in a fuss; how embarassing. And since it's IBS, it's all my fault. I do have bad eating habits...."

Finally the call came. And as soon as I put the phone to my ear and didn't hear an immediate "everything looks good," I was happy. I immediately recognized the Pause that comes before "bad" news.

This is not me. Source.

[Pause.] "So, mmatins, your CT showed [Pause] a pattern of [Pause] proctocolitis."

I was so overjoyed that it wasn't normal that I didn't hear the last word. "Of what?" I asked. I was so relieved, I could have sung (except that I was exhausted x10^23).

"Proctocolitis," she repeated.

Silently, I said to myself, "Sounds like UC. I bet I have UC."

"So," continued by GP on the phone, "even though the most likely cause is infection in your age group, I still think you should see GI if this pattern... [Pause] recurs."

My brain was saying, quite calmly, "I have UC. How about that." Before that day was out, I said (even aloud) "I want a colonoscopy." But I tractably accepted her plan of a 10-day course of antibiotics and a GI appointment later that month. The antibiotics which made me more nauseous and more malaised than I hope I ever feel again. (Remind me never to prescribe levaquin and flagyl so flippantly again!) And I didn't get better. And so my brain kept saying, "I have UC."

I missed about a week of work. When I came back (not physiologically better but psychologically better for not bottling it up and for being rather far along in the Kubler-Ross due to my constant self-diagnosis), I still hadn't seen GI. And people still wanted mini-HPIs! My upper-level finally ran into me in the hallway and, finding that I was no better and agreeing with my provisional self-diagnosis, texted a GI doc. (I protested; I didn't want to be treated differently from any other person.)

My GP called the next day and, finding I was no better, asked "Can't I just put you in [the hospital]?"

And I said, "At this point, I really wouldn't object."

"We could put you on teaching [the service the residents work]."

"Ah," I said. I'd always thought I'd want to be a patient of residents if I were ever in the hospital (to pay back my debt, you know?), but I didn't think that it would happen during my IM rotation with the residents I just worked with. "Actually, I think I'd prefer if we didn't."

"Okay," my GP said. "Now, I have a med student working with me right now, but you don't know her, right?"

"Actually, we're pretty good friends."

"Oh, all right. I'll just round without her. But this way, you can get in to GI faster."

I'd just come off wards, so my BS-reasons-for-being-in-the-hospital meter was still very accurate. "Do you think I could just get an outpatient appointment?" In the end, my GP also texted the GI doc. Apparently, when a specialist gets two texts in two days, you get a work-in appointment within the week.

As I sat in the GI doc's office, I heard her speaking with the patient in the next room. (This doc is delightfully loud, direct, fast, and very competent.) She was giving her colonoscopy prep instructions. "That's me in twenty minutes," I mused, resting my head against the wall behind me nonchalantly. I'd worked at a pharmacy in college and knew what Golytely was like. "I guess I'll find out how bad it really is," I thought.

Actually, she gave me a new-fangled prep that was super easy, so I have nothing to complain about. I was scoped and found to have abnormal but confusing findings (UC or Crohn's?), and had bloodwork done with showed probable UC. I'm now on meds to get me into remission...and we're (almost) almost there.

Was it hard to adjust to the fact that I have UC? Meh. Not really. I had the possibility on the back burner from the beginning, and I had lots of time to adjust. The view I have of chronic illnesses also helps. Now I get to be a prayer/suffering warrior and care for them!! (What a deal!) And life is not that different; as my GP remarked to me the other day, it's a good time in history to have colitis. (Mesalamine is amazing.) It's not a very inconvenient illness. Stress and other unknown factors might bring on flare-ups (and those might get pretty bad), there are some nasty complications and some extra-intestinal effects (all of those are yikes yikes yikes), and there's an increased risk of cancer (which brings lots and lots of colonoscopies into my future)...but I've got a very moderate case and there are a lot of ways to treat it. In the end, I gained a lot from the flare-up and I'll say more in a future post.