Got Guts: Colitis, Pregnancy & a Happy Ending

When I was first diagnosed with colitis, getting pregnant was the last thing on my mind. I was 20 years old, sick as can be and just wanted an answer to why I felt so crappy (literally) and how I could start feeling better.

Though it took awhile to answer the latter, I finally was able to achieve remission after a few years of trying different drug regimens. At this point, I had just finished grad school and was moving down to North Carolina to be with my boyfriend (hi, husband!) and still wasn't really thinking about how my guts would affect my ability to get pregnant or have a healthy baby.

It wasn't really until 2009, about 6 years after I had been diagnosed and 2 years of marriage in the books, that Matt and I first started to talk about our timeline for having kids and the issue of my colitis really came to the surface. I was fortunate enough to have been under the care of the same doctor for 3 years now - the longest stretch I had had so far - and we both really liked and trusted him. We weren't really ready to have a baby quite yet, but we figured we should broach the subject with my doctor sooner rather than later.

Given that I hadn't put much thought into how my disease could affect my fertility, pregnancy or having a healthy baby, I started to get a little nervous and scared when we first started discussing it. In the literature (which is where science nerds like Matt and I turn to), there are studies that show that women with colitis have higher risk for miscarriage, pre-term babies, low birth weight babies and birth defects, like cleft palates. To make matters even more complicated, the type of medication that I had been on for years - and that I had finally achieved remission with - was an immunosuppressant with fairly little research to either support or deny use during pregnancy. Even if I did stay on it during pregnancy, I wouldn't be able to breastfeed on it which was disappointing and upsetting to me.

To keep a long story (relatively) short, the next couple of years brought some frustrating setbacks. First, I tried to taper down and then eventually go off my immunosuppressant. It didn't work. I had my first flare in over 4 years and it took two rounds of prednisone to get me back under control again. My doctor was supportive of my "experiment" but when all was said and done, we both agreed it was pretty obvious I needed to stay on the medication. I also ended up changing OBs after this when, despite the obvious setback from my health, the doctor I was currently seeing sent me to a high risk specialist and both of them basically spent the entirety of every appointment reading all the risk factors of colitis and pregnancy to me and never offering any support.

When I met my new OB and explained my situation and her response was a very reassuring "So you'll stay on the drugs, we'll monitor you, we'll monitor baby and it will all be okay" I could have cried from relief. In fact, I probably did. Once I had my OB and GI on the same page and my drug regime established, we finally felt like we were in a good place, medically, to have a baby.

I was healthy when we got pregnant, and my GI had told me anecdotally that people tended to stay in the same state they were when they got pregnant. Healthy women stayed healthy, women who were flaring tended to stay in a flare. I hoped he was right.

I had an amazingly easy pregnancy and felt great throughout most of it, minus a 2-day bout with morning sickness around week 4 and the normal discomfort and some nausea at the end. Around Memorial Day, I started having symptoms of a flare and panicked... but they went away within a day or two. A normal GI bug, my doctor concluded, or maybe just one of those random inexplicable symptoms of pregnancy. There are lots of weird ones, so I'm told.

Despite my easy and healthy pregnancy, the worries lurked in the back of my head about pre-term and low birth weight babies. I refused to let my mind think about anything worse. When I passed the end of the first trimester, I breathed an initial sigh of relief. When I passed the 37 week mark, I breathed another sigh of relief.

When my early baby showed up and weighed a whopping 8 lbs 1 oz and had all ten fingers and toes and a perfect little face, my sighs of relief became tears of joy.

It's easy to take health for granted, and even I can do that when I've had years of being in remission. It's easy to take a healthy baby for granted, after the initial exams confirm that everything is perfect and you're home and in the midst of sleepless nights, making bottles and changing diapers.

Yesterday I went to my routine quarterly GI visit, with my healthy 12.5 lb baby in tow with me. As soon as I was checked in to get my vitals done, I had about six different nurses flock over to me and cluck and cuddle Bo. They tucked us into our room to wait for the doctor and as I sat there in the quiet room waiting for my appointment - the kind that I happily refer to as the "good boring" appointments - I suddenly felt very reflective. I thought about reading all those research studies 3 years ago, tampering with all my medication doses and the 9 months of the quiet low-intensity worry that was always present - and how quickly it all disappeared the moment I laid my eyes on my son.

And I thought about how I hope, never ever, to lose sight of the gratitude that I have for his health and mine and for the journey it took for us to get to this "routine, boring" appointment.

Internal Affairs

This morning I woke up to the sound of Buddy standing in the door of our bedroom, shaking his head, making his collar tags jangle. Translation: "Wake up, Mom. I gots to pee." I begrudgingly got out of bed, threw on my jacket, clipped on his leash and started walking. The sun was up, the air was surprisingly warm so I guessed it was probably a little after 7:30. A few steps into our walk it occurred to me what exactly had woken me from my delicious slumber: the dog. In other words: NOT my stomach. "Buddy!" I exclaimed*, "I slept through the night!" He responded with an appreciative tail wag and went frolicking after some dancing leaves.

It's been about 20 days since I started the higher dose of steroids, and each day has brought little victories that move me closer and closer back to feeling like I have a normal, healthy life again. On Monday, I ate lunch at work. Tuesday, I worked a full day. Wednesday, I nibbled a (cooked) green bean. (I know, it's pathetic, but the idea of eating veggies again? So excited. I miss my green things.) On Thursday, I threw all caution to the wind and ordered a (decaf) caramel macchiato. I sat in Starbucks for nearly 3 hours, tentatively sipping, and waiting to see what would happen. (Nothing!) And last night? I apparently slept through the entire night. Small victories, but each one moves me a little bit closer to feeling normal again.

After much debate on my drug choices, I ended up deciding to go back on the 6mp I had been on before. I'm a little bit disappointed that I wasn't able to stay off them, for the reasons I mentioned before, but I know that being healthy and achieving another long term remission is more important. I'm really hopeful that they'll work again this time, although it'll probably be late November/December before we know one way or the other. The benefits I'm seeing right now are from the steroids, and I'll be on them, slowly tapering down the dose, while the 6mp builds up.

In the back of my mind lurks the fear that I'm only better temporarily and that with any 10 mg drop in steroids, all of the symptoms will come rushing back. I have to keep actively brushing this thought from my mind, reminding myself that I've achieved remission with 6mp before and telling myself it's going to happen again. It seems that getting healthy has been one part medical, one very large part psychological. Which is, of course, the most obvious statement EVER.

I have to say though, that throughout this turbulent month I have been so very fortunate in many ways. For starters, I am married to a man in medicine. There is nothing delicate and lovely about the symptoms of ulcerative colitis, and it's always made it easier that I've never felt like I had to tiptoe around what was going on with my body and my health with him. (I will also say that after seven years of having this disease, I have personally become way more comfortable discussing it. For instance, telling my boss I needed to work from home because "the bathroom in our office is too far away and I might not make it"... probably would not have happened two or three years ago. I'm over modesty.) But more importantly, Matt has always gone out of his way in the things he does to make each day easier and to be sympathetic to the unpredictable nature of the disease, and for that I am so very thankful.

I've also been fortunate to have some really astoundingly wonderful medical care. I know our health care system is broken and in fact, I had a short period of time in my life when I had no health insurance and experienced the hell first hand (crying in Wal-mart pharmacy? Check), but I just can't get on board with people who bash physicians, who are just a product of the broken system. Ok, I know - I am absolutely biased on this issue. But, my physician (not the one I'm married to, the one who actually treats me) is a wonderful practitioner. He responds to emails within a few hours, he never rushes through appointments, he explains my options thoroughly, answers my questions... he's just great and that's that.

I really have just been so blessed throughout the course of this flare in so many ways - from friends and family members who have given everything from Gatorade to sympathetic ears to prayers (especially my mom, who deserves an award for fielding the I'm having a pity party and I want someone to attend phone calls) to the fact that I've had the flexibility to work from home for nearly 3 weeks to the fact that I do have health insurance this time around to keep on filling script after script.

I sat down this morning to write an update on where I was with my flare, and I didn't expect this to turn this into a soliloquy of sappiness but it feels much better to focus on what is good, rather than dwell on the lurking uncertainties or fears that still remain. Today, I am cautious enough to know that this not the end of this particular journey, but hopeful enough to expect that it is around the corner. That, I believe, is a pretty good place to be. I'll take it.

My friends Jamie & Donna brought me these when my flare started.

3 weeks later, they still look this good.

I'm putting steroids in their water too.

(Kidding.)

(Maybe.)

Choices

Hot tears prick my eyes and I blink fast to try and keep them at bay. The admitting nurse bustles through her paperwork, asking my maiden name, religious preference, husband's phone number. She looks up and catches me blink back a tear.

"I'm a little nervous about the procedure," I mumble. She stops her typing, comes over to me and puts an arm around me and clucks maternally. This just makes it worse. I'm not nervous, but I didn't know how to explain to a complete stranger that I just shouldn't be here. I belong on the other side of the waiting room, the clinic side. Where we meet in rooms with computers and tables, and we talk and we shake hands and we pay $20 and go on with our lives. I don't belong on this side, where I have to wear a bracelet and a gown and be rolled around in a bed.

"I'm not sick!" I want to scream, as the next nurse points out the gowns, and the little socks with grips. "I'm not sick," I want to scream as she gives me instructions to prep for the flex sig procedure. I stare in the mirror at the girl wearing the gown, who was no make up on, a frown on her face and tears escaping the corners of her eyes. From the bathroom of my hospital room, I text Jess. "I'm having a meltdown," I tell her. She texts me long arms hugs and reminds me to breathe, that the procedure will be short and I don't have to make any decisions right now.

Thirty minutes ago, I was sitting in the clinic room, talking to Dr. B. He explained why he wanted to do a flex sig (to eliminate any possibilities that this was anything other than UC), told me he fully expected it to be UC and if it was, these were my two choices. That's what those hot things started building up behind my eyes. When the lump started pressing hard in my throat. "Breathe, Megs," I told myself as he sketched out on paper in front of me the two choices, the different classes, risks, time lines, side effects. None of this was anything astoundly new, I had gone over both of these exact same choices in 2005. Different room, different doctor, different hospital, same choices.

It's just that.... I had forgotten what it felt like to feel this way. To feel like a sick person. It doesn't feel like me, anymore.

But I have choices, and choices are good. I know this. In 2005, surgery was looking like a very real option. Today it wasn't even on the table, and I am grateful for that. I have choices.

I guess, despite the very real presence of symptoms and the very real disruptance of my life over the last 16 days, I just kept expecting to wake up and feel better. That the steroids were still waiting to kick in, and that this would just be a small and soon forgotten about lapse. Sitting there looking at the names of those medicines hit me square in the gut that this was real, I was sick and those were my choices.

When I was 23, the choice was simple. 6mp is an older drug. It's been around and tested for 30 years. It has minimal side effects, other than a compromised immune system and excellent effectiveness. Remicade, my other choice, had just been newly approved for UC in 2005. My doctor (at the time) was excited about it's possibilities, but still a little nervous about it given his complete inexperience with a drug in it's infancy. Remicade was boasted to work immediately, 6mp had a 8-12 week build-up. I knew at the time that steroids would buy me 6-8 weeks of wellness, and I chose 6mp. As I tapered down the steroids, the 6mp kicked in. In March 2006, I went off steroids for the last time and I was in remission. Cue the kick line.

Cut to January 2009. After doing some research on 6mp and learning that one day when I had children I wouldn't be able to breastfeed, I decided to try tapering off. I wanted plenty of time to be off the medicine to see if I could stay healthy without it. Dr. B was not estactic about this game plan, but somewhere in the midst of "it's your body and your decision," he consented. Nervously. 6mp doesn't take long to get out of the system, and at the 3 month point, we both breathed a small sigh of relief that hey, I might be able to do this. (This is where the "colitis is a disease of recurrence" talk came in that I oh so smugly laughed at. Oh, the irony.)

I am pretty sure at this point in the game my doctor would love to grab me by the shoulders and shake some "I told you so, child" into me. However, by some modicum of professionalism and restraint he resisted the urge to do so. I have very emphatically received the message, however, that whatever medication I choose to go now, should I achieve remission, I would be very highly recommended to stay on said medication. Loud and clear, captain.

I came home from the appointment feeling very despondent. I knew I should be happy that I had two choices, but I just felt resistant that I had to make a choice, period. Add to that a day of not eating or drinking in preparation for my procedure, and I felt fatigued, headachey and squirrely. My brain literally felt like it was pulling away from the insides of my skull, a feat that I had only been able to accomplish thus far in my life through the consumption of 6 whiskey and sprites, followed by three Hot Diggity Dogs. (I am sorry, Mommy Dear, that you called me at this immediate juncture. I am surprised you do not have a plane ticket in hand right now.) I came home and went to bed. For the next 16 hours, I slept fitfully, waking up to drink Gatorade, converse briefly with Matt and possibly let the dog out at some point. This may have been the middle of the night, and I may have worn my bathrobe in the front yard. Whether this was a REM cycle or real life, only Buddy and any insomniac neighbors know.

Sometime around noon, I got up off the couch (where I had transferred at some unknown point), took a shower and got dressed. It was then that I decided my pity party was coming to an abrupt end. No one had brought cupcakes anyways, so there seemed to be no point in continuing it.

I'm not sure what sparked this about face. Perhaps it's the hopefulness that one of these two drugs is going to restore me to normalcy, or the delirium of 2/3rds of a day of sleep, but I think mostly it's the memory of a girl who was sick and despondent and fretful for three years. I don't want to be the person I just was for the last 16 hours. I looked in the mirror at the girl in the hospital gown and I remembered her, and it scared me. I am sorry that she experienced this once, and I don't fault for her for being so sad about it, but I don't want to revisit it.

I am not crazy about either choice, because both come with their tri-fold sheet of side effects, risks and other warnings. 6mp still comes with its long build up, but I've had a track record of success with it. Remicade holds promises of immediate, acute relief but is still bit of an unknown and a newer drug. At 27, I'm thinking of drugs in a way I never did at 23... in some years time, I may not be the only person whose body they effect. And if I got the message right from my doctor, some years time is going to be the anticipated duration of whatever drug works for me next. That factor seems a bit surreal, but I guess at the end of the day the bottom line is healthy me is going to be best as far as all that goes.

Being a person with a chronic disease comes with a different story line, one that I guess I had forgotten I was a main character in. I might not have chosen for my body to do this, but I'm pretty sure at the end of the day, I do still get to choose what my mind does. I don't know how my body is going to feel tonight, or tomorrow, or the next day. I don't know when I'll eat a salad or drink a glass of wine again. I don't know when I'll have to energy to spring out of bed at 6 am, teach a class at 2 pm or cook dinner at 5 pm. I don't know when I'll eat something without looking around for the nearest bathroom, or get in the car without counting miles between exits. And I don't know which drug I choose. But I do not choose to be sick, and sad, and fearful. I choose to be patient, and hopeful and optimistic. I will start there.

Trust me, nobody looks good in this color blue.

Velcro Dog

Buddy's last week was a little chaotic, between our four day visit from dachshund Layla, 2 back to back days at Doggy Daycare and an overnight stay at our friends' house. Like any routine oriented species, he's been showing some signs of regression these last few days. We call this velcro dog syndrome. Buddy, in general, follows me or Matt around the house. He's learned that the bedroom and dinner table are both off limits, but other than that, where ever you go, there he be. He's been improving with that lately, allowing us free range to walk from the living room to the kitchen or folding laundry without standing underfoot. However, after his stressful week, he is back to wanting to be where ever we are.

Buddy & Layla. The stress of having to share.

Case in point? As noted in my prior blog, I've been spending a great deal of time in one particular room of the house. If I'm not intentional about latching the door all the way, it isn't long before a little paw comes and swings the door wide open. If I do shut it, I can pretty much guarantee on tripping over his curled up body as soon as I walk out. I get up frequently during the night to use the bathroom when I'm flaring, and I usually check to make sure Buddy's sleeping soundly in his corner of the living room as I pass through. Tonight, I got up and saw no signs of Buddy. I was a little perplexed until I rounded the corner to find him curled up, sound asleep, right in front of the bathroom door.

Dog knows where his momma gon' be.

To Everything, Turn.

A few months ago, I was having a routine check up with my gastroenterologist. I always like to tease him that I must be his most boring appointment of the day, since the last 3 years I have met with him every quarter to look at lab values, review the medications I'm on, tell him I have no symptoms, shake his hand and promise to see him in 3 months.

The last time I was there, we made some adjustments to my medications (ok, truth be told, I made some adjustments to which he hesitantly agreed to) and we discussed the ramifications of what would happen if these adjustments didn't go smoothly.

Sitting across from me in his chair, he talked about various options I would have, explaining in very simple terms that "colitis is a disease of recurrence."

I am chagrined to admit that in my head, I smugly laughed at this statement. "Not me," I thought. "I've got this baby licked."

Who knows where this burst of confidence had come from? In the six years I have had ulcerative colitis, the first three years were a rollercoaster of uncontrolled symptoms, tinkering with medications, enrolling in clinical trials, and even contemplating surgery. While I have been amazingly blessed to be in remission for the last three years, it's not like the past history of my disease gives me reason for such arrogance.

But a lot has changed in my life in three years and at that moment, I did indeed feel utterly confident that while colitis may be a disease of recurrence, mine would not be making a comeback.

You know where this is going, right?

Note to you, dear reader, if you're squeamish about body functions, it's time to sign off. If you're not too familiar with ulcerative colitis, let me just inform you it falls under the classification of "Inflammatory Bowel Disease." I like to call it the angry colon. You do the math.

It started innocently enough. Three weeks ago, I was meeting Jamie and Donna for our 10 mile run on a crisp, beautiful Saturday morning. I pulled in to the Harris Teeter parking lot where we were meeting and had to dash inside to find the restroom. I didn't think too much of this, as running and urgent bathroom trips aren't too unusual - although I didn't really take stock of the fact that this usually happens post ten miles, not pre ten miles. The next week trickled on like this, and I systemically began eliminating the usual culprits - coffee, pop, sugar, running...

No avail. Last Friday, I was working from home and I knew it was time to concede that this was looking like a flare. I could barely finish drinking a glass of water, much less eat an actual meal, before I was running to find the bathroom. Other telltale signs of a flare began showing up - joint pain, fatigue, cramping, and then most undeniably, tremendous amounts of blood. (Yup, I'm going to go there. This is my life, mk?)

I didn't panic yet, as I've generally responded pretty well to steroids in the past as a quick fix for flares. I called the on-call physician who prescribed me a low dose of steroids. I counted down the days til Monday, counting on the fact that my doctor would come through my usual dose and by Tuesday, I'd be back to normal.

Fast forward to Wednesday. I'm on my usual amount of steroids. I'm leaving for Montauk, for one of my best friend's wedding in 24 hours. Nothing has changed. No food will stay with me. I'm waking up five, six times during the night. I am a zombie. I am tired, I am hungry, I am sick of the hum of the lights in my own bathroom, I am scared that this is not stopping. I am, officially, anxious.

The weekend travel to Montauk was one of the most anxious and stressful weekends I've experienced. The fear that the urgency to use the restroom would overcome me at the most inopportune moment - while sitting in the middle of preacher's homily, the moment the plane was barreling down the runway, while I was standing up there giving my toast to my lovely friend - was overwhelming. I sat in bed on Saturday morning bawling into my two wonderful girlfriend's arms, overcome with sleep deprivation and anxiety, sniveling about how I was going to ruin the ceremony by dashing from the front pew, heels clattering loudly as I sprinted to find the SINGLE bathroom in the back of the church. (Note to church builders: more than one? Please?)

Thank the high heavens these same girls spent nearly every waking moment with me during the first year of my disease, our senior year in college, when I was undiagnosed and equally as out of control. They know that "find a gas station" is not a request, but a statement; they know when I say "I can't eat that" to move on, and they make no fuss about tucking me in early after the rehearsal dinner to go back out, never once making me feel bad that I'm not keeping up. My gratitude for the support and understanding of these girls is profound.

I survived the weekend, even sat through the entire ceremony. Without a single drop of champagne or bite of wedding cake (Boston Creme Pie, cry me a river...), I even managed to lose myself for a few hours in the boisterous joy of the reception, dancing around with my favorite people in the world to "Jessie's Girl" and "Don't Stop Believing." And, let's be honest, I've been a bride... I know that everything I was experiencing didn't extract a single moment of happiness from my gorgeous, wonderful friend's perfect weekend.

Although I did try to hide it from her, and once she determined I wasn't pregnant after loudly pointing out that I was not drinking champagne (AT ELEVEN AM, WHAT AM I, A WINO???! WHAT DO YOU PEOPLE EXPECT... ok yes, clear giveaway), she then quickly deduced that I was sick. "You didn't eat salad at lunch. You always eat salad." Most observant friend ever? You bet.

Also on the amazing list? My husband. Always has been, since the moment I was diagnosed. Can you imagine coming home from a 12 hour shift of sick people ... to another sick person? He serves me in his actions, walking the dog when he realizes I'm going to be late to work because I'm behind closed doors, heating up another frozen pizza with nary a complaint and texting me to drink Gatorade throughout the weekend. He is unfailingly and unflinchingly there.

The weekend is behind me, and I'm back home wondering what the options are. I will see my doctor on Friday, and it sounds like there's a flex sig procedure in my future which I am less than enthralled about. In the meantime, I am trying to take this one moment at a time.

I don't look sick, I don't sound sick, and short of explaining my bathroom habits, it's infinitely hard to explain to someone what living with colitis day to day is like. Each moment is centered on where will I be, will there be a bathroom, can I eat, can I drink, will I be with others, will I have to move around a lot... Sleep is interrupted every couple hours, and the resulting deprivation can quickly turn a minor stress into tears and catastrophe. Little things are affected. I can't walk Buddy for half an hour, because half an hour takes me too far from home and the bathroom. Social life? Non existant. I don't eat before teaching, because what if? Mid power point? Can you imagine?

I can.

I know a great deal of my remission has been the change in my mental status over the last three years. I have made long-legged strides to deal with stress definitely, to loosen tight reins on the need to control, to choose thoughts that bring me perspectives of joy and gratitude. This is hard to do when the most basic of body functions is not even something you have control over. I will honestly say I have been fighting an uphill battle to "think positive" for 10 days, since this started.

Yesterday, I decided to stop trying to force my thoughts to positives and try to go a little more simple. Each moment that I find my shoulders up around my ears, my hands gripping on the steering wheel, or tears pricking at my eyes as thoughts of "what if this keeps going... what if i have to have surgery... what if I don't respond to.... what if the flex sig shows.... WHAT IF...." I am trying to stop and breathe. That's it. Just breathe.

So that is where I am, right now.

Colitis is a disease of recurrence. That is my right now. It hasn't been my every single day, and I pray it will not be in the future. But for now, it is. It is.

(But at least I have a doctor in house.)