Crohns disease and depression

A Day in the Life of a Crohn’s Disease Patient

January 20, 2012

Christina has Crohn’s disease that has been aggressive and has required 3 small bowel resection[s] despite Remicade and Imuran. Fatigue is there most days. There is a lot of intermittent abdominal pain. Out of a month, 10 days are bad, some are okay where a heating pad is enough and then there are 10 days or so where she is fine. She manages bad days with Ensure, pasta or less food. Her C-reactive protein, ESR were negative. Pain is still present. 

“Look, can I be honest?” my gastroenterologist asks.

His question is preceded by a look I’ve come to know well—hands rubbing his eyes as if he’s frustrated or tired, lending the moment an intimacy that is either calculated, or comes after spending years with a person in their most vulnerable state. I can’t tell.

And I hate that it matters to me.

He leans back in his chair and settles into friendship mode. I genuinely like this man–he’s funny, blunt, and compassionate. But he’s stubborn, too. In the three years I’ve been on Remicade, I’ve had three surgeries and chronic, active Crohn’s disease symptoms. I’ve been willing to call the drug a wash, but he still insists that it’s working, even though the last time I had surgery, my surgeon removed two and a half feet of active disease only two weeks after my last infusion.

I nod and brace for his honesty and I’m glad I do.

“I see an attractive, intelligent woman sitting in front of me,” he begins and I try not to flinch. I know where the conversation is going and I try to block it out until I hear the words I don’t want to hear. The words that simplify this very complicated life that’s been given to me: “You need to focus on the positive.”

I regret opening myself up to him, explaining my feelings. That I’m trapped between eating a high-fiber diet to control my genetic hyperlipidemia which has rendered my blood a thick, paint-like substance because it’s so full of fat; and between eating a pasta- and white-bread-filled diet to control my abdominal pain and crippling Crohn’s flares because I can’t digest more than two over-cooked servings of vegetables a day.

I cross my arms over my chest and I feel the muscles in my shoulders tighten involuntarily, until I am semi-hunched around my heart. My rational mind is screaming at me to uncross my arms, to show that I am an open, compliant patient, eager for knowledge, eager for help.

Instead I want to cry because I am tired of this dance. I want to growl, “You don’t know how fucking positive I’ve been for the past five years.” I want to tell him that people shake their heads in wonder and tell me that I have a good attitude. That if they had severe Crohn’s disease, they wouldn’t know how to face the chronic pain, the inability to leave the house, the invasive and nauseating tests, and the painful, slow-healing surgeries.

I want to tell him how many times I’ve curled around myself, shaking and sweating from abdominal pain and told myself, “It will get better. You are fine. This will pass—you’ll be okay.”

I look for the positive in every crack in the wall—in every space inside of myself. I am sick of the positive.

I am sick of myself.

But my anger only drives him away—it makes me unattractive. And the worst part is that I know he is trying to help me, and my gracious, compassionate side wants to reward him for his help, so I nod in understanding as the muscles continue to tighten until I can barely turn my head.

“You should try yoga and exercise,” he adds. “You should lose weight.” He looks at me, then, taking in as much of my body as he can while I’m sitting in a chair that grows smaller across from his massive desk. His eyes squint slightly, “Are you overweight?” Before I can answer, he leans in and stares at his computer screen and finds the weight his nurse entered before she ushered me into his office. He does a quick BMI calculation and says that, yes, I’m slightly overweight.

My neck locks and my face freezes. I’m no longer able to fake a smile and I know this is dangerous because if I’m not responsive and open he will shut down and will stop trying to fight for me.

I wish I could tell him that I’ve gained the weight on purpose—that after losing 25 pounds in less than one month, I know how quickly I can sink into a weak, crumpled shell of myself. I wish I could explain that I’ve switched from drinking Diet Coke to real Coke in order to gain more weight from empty calories, but he won’t understand my rationale because it isn’t rational.

Sitting there, my muscles tightening, cold drops of sweat sliding between my hunched shoulder blades, I realize that I can’t tell him how the past summer has changed me. How two months on the GI floor at a university hospital listening to patients coding while I said the Lord’s Prayer out loud and tried to stay alive has made me a completely different person. I can no longer laugh at his genuinely funny jokes or appear charming—I can no longer apologize for feeling a “little down.”

At this moment, it takes all I have not to yell that he should have mentioned yoga four years ago.

I nod slightly, instead—as much as my clenched neck muscles will allow.

“Maybe if you saw a counselor or learned how to control your breathing…”

I know no amount of breathing will help my intestines process healthy roughage—the broccoli, cabbage, and steamed cauliflower I love and miss so much. He tells me of a Yogi in India who triumphed terminal TB and I flash to the women in the gym who teach yoga in Virginia and I want to say, “Are you fucking kidding me right now?” but I don’t.

Because I don’t want to hurt his feelings.

I had a fairly long discussion with Christina about how to manage her symptoms. I think a holistic approach with other non-pharmacologic interventions such as exercise, yoga, meditation, pranayama, counseling if necessary would be a good idea to help enforce the positive aspects of life and health. We talked about a small bowel x-ray and she hates the idea of doing this [...]. We also talked about a pill cam to assess if her disease is active, but she is not up for any tests at this time. So I would like her to get started on Humira, focus of positive aspects of health and return in a few months to assess how she is doing.

As my doctor takes notes, I want to remind him that I spent almost a thousand dollars on acupuncture in between my first and second surgeries. I also want to remind him of the money I sank into fruitless sessions with a dietician. But I try to forget about long, thin silver needles in my stomach, and a woman telling me to heat high-fiber cereal even after I explained that it would cause an obstruction, and wise, self-healing Yogis and the chances of finding one in my hometown. Instead I cling to the hope that Humira will be my wonder drug even though I know it probably isn’t.

Based on the inflammatory markers and the fact that she is feeling better after stopping Remicade and Imuran, I don’t believe that she has active inflammatory bowel disease at this time. She clearly has a complicated history of severe Crohn’s disease, but I think it is in remission. I suspect that some of her symptoms are a result of IBS and possibly visceral hyper-sensitivity and possibly from previous surgical interventions likely due to the adhesions.

I read the rest of my doctor’s notes later that afternoon and marvel that we have two very different recollections of what we’ve both heard and said. I wonder why he’s written that I’ve stopped Remicade when I haven’t. I don’t bother to call and correct my medical records to reflect that I’ve only stopped Imuran, and that I was at his office only a few weeks before for my last infusion. And I don’t ask him to note that I’m only refusing new tests because I’ve choked down at least a gallon of heavy liquid barium in the past five years and have had four small bowel x-ray series which have all come back clear even when I’ve had high-grade strictures. Or that the last pill camera lodged in my gut, causing a small bowel obstruction and unbelievable pain.

And I refrain from asking him to change my record to reflect the fact that I don’t feel better, because in fact, I feel like shit.

I don’t tell him these things because I don’t want to fight. My body is tired and my soul is tattered. I know my job as a Crohn’s disease patient is to be compliant and follow my gastroenterologist’s advice. I want to keep all of these negative feelings and thoughts inside, but I’ve changed. I’m no longer filled with hope.

I’m no longer able to be positive.

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Tearing Down My Wall

I’ve spent the last eight years dissecting my every action, and listening to others who love me do the same.

“Is it something you ate?” They’ll ask me (not out of malice but in a genuine attempt to help). “Is it something you did?”

And I will wonder. No, that’s not honest–I won’t wonder. Every time I inject myself with Humira and I don’t get better, I feel somewhere deep in my bones that it is my fault–that it must have been something that I did.

When I wake up in the middle of the night and run to the restroom and start to shake with pain, I go through a mental list of everything I ate. It’s lonely late at night when my family’s sleeping peacefully, and it’s in these moments that I build the wall that separates me from everyone else.

“I should have picked the mushrooms out of that dish,” I tell myself.

“How dare I eat two solid meals in one day.”

When the pain doesn’t come and the nights are quiet, I sort through my every choice to find the secret to my relief. If I slept 10 hours the night before, I will sleep 10 hours again. If I ate soft foods, I will eat bread.

“Who needs pesky vitamins and minerals, anyway?” I’ll ask myself.

“I don’t. Not when I have the chance to feel like I used to again.”

But nothing lasts forever–it never does. I’ll know this when I stare at my bedroom wall, the sound of my kids laughing a few rooms away. With my knees to my chest, I will berate myself for trusting that bread and sleep would do the trick.

“I’m so stupid,” I’ll tell myself, “To think I’d found the formula to my Crohn’s success.”

I know, now, that I’m not the only one who does this. Guilt and self-blame take center stage in the inflammatory bowel disease community. We talk of grasping at straws–some more promising than others. We throw around words like “natural” and imply that others who need medication are somehow not trying hard enough. We go on diets and tell ourselves that we’ve discovered that one trick. We share it with others and swear that it will work for them, but it might not.

And when it falls through for us–when that one diet doesn’t work, what do we do?

We blame ourselves.

We don’t blame the fact that we have a unique disease the mechanisms behind which even the world’s top scientists don’t fully understand. Instead, we take it upon ourselves to criticize the things we can’t change, including the daily stress that comes from having to work hard to support our families. And if we can’t relax–if we fail at Yoga or meditation or fail at benefiting from therapy–we feel at fault.

I didn’t choose Crohn’s, but I can choose to give myself a much-needed emotional break. I can eliminate some foods that make me flare, but my body acts in ways I can’t predict. What works for others, won’t work for me and that’s okay.

All I can do is to try to choose peace in those painful moments, and to work hard to remove the wall that I have built.

I may have Crohn’s disease, but I will be damned if I will continue to let it have me.

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Not all Support is Good Support

When I stepped outside of myself and decided to welcome the world into my sometimes confusing and painful experiences with Crohn’s disease by writing a blog and creating “The Crohn’s and Ulcerative Colitis Diaries” page on Facebook, I had no idea that I was opening a can of worms. (And no, not the good kind that are helping some Crohn’s disease patients reach remission.) I was excited to share fun big cat memes about Crohn’s fatigue, post informative news articles and research into new IBD treatments, and to write my very raw story to help those who are alone, at home, wondering how and when their life veered off onto Rotten Bowel Exit #666.

But then the lovely world intruded. My support team widened, and I entered other groups where most of the community was wonderful and welcoming, while jealousy, anger, and judgment simmered just beneath the surface.

I can’t tell you how many times I’ve yelled at my computer (but I can tell you it’s filed a restraining order against me.) I’ve read heart-felt posts written by Crohnies who are scared and wondering if they should check out of life. They’re exhausted from the pain of having bile acid diarrhea rip through their ulcerated guts and past their abscessed fistulas, and they’re turning to a place they think will help them. Within moments, they’re attacked for being too “whiny” and told that they’re bringing their disease upon themselves for not pretending the world is filled with pastel unicorns and cheezburger kittens.

I’ve also seen people attacked for sharing that they’re taking Remicade and Imuran to control their disease. People who aren’t doctors tell these already-scared patients that they’re going to get cancer or they’ll die from liver failure because a cousin’s cousin’s mother’s hamster’s wife’s friend died after receiving one dose of Remicade. The person attacking this patient (who is now certain they’re going to die) will tell them to try “all natural” treatments like medical marijuana–which is unfortunately not legal in most states and is a one-way ticket to jail and a criminal record for most of us. The scared patient is then accused of bowing down to the pharmaceutical industry (which is apparently code for “Satan” in many groups even though this industry saves lives).

At first I was surprised and offended, wondering how in the hell someone with Crohn’s disease can attack another patient with the same debilitating disease? I couldn’t figure out how a participant of a chronic illness support group could justify judging someone who is facing the nasty end of a scalpel and is afraid they’ll die on the surgical table, leaving their kids behind.

I realize, now, that my expectations were unrealistic, and that just because we’re all suffering doesn’t suddenly make us angels. People who like to “stir the pot” in the real world will stir it just as hard in the chronic illness community. People who are self-righteous at home and at work don’t turn their personalities off before stepping into what I’ve always naively assumed were “safe zones”.

We all know that not everyone has a severe form of Crohn’s disease and that some symptoms can be mild. Some people don’t suffer every day and don’t believe that others do. We all have different coping mechanisms. Some people do feel better when they’re always positive, skipping through the buttercups in their mind. Just because those buttercups don’t grow for me (seriously, can someone send me some magical seeds?) doesn’t mean I’m any better or worse than the person who uses that defense mechanism.

But it doesn’t mean I have to put up with the judgment. I’m responsible for my own physical and mental health first–we all are. Not all support is good support and all of us have to make tough decisions even if that means backing away from the people who make us feel worse.

I know I can’t help everyone–and not everyone wants my kind of help. And for the folks who do, you can find me on my Facebook page where the conversation is compassionate and mean comments are deleted. It may not have as many “likes” due to lack of drama, but I promise you that you’ll be safe and supported there, no matter what treatment path you take.

Danielle Moore Red-Winged Blackbird in reeds

Hurry Up and Wait: Part II

I can feel myself shutting down. Everything feels like “too much”. Watching TV, reading a book–everything but going to bed feels like “too much”. When my alarm goes off in the morning, I count down the hours until I’m allowed to sleep again.

I know I’ve worked too hard wrestling my Crohn’s disease into perspective to let it all be erased by a scary lung CT. I know it’s petulant to wonder what I’ve done to deserve such bad luck. And I know I have no right to complain when others are suffering much worse.

I was able to find a pulmonologist who would see me before the end of November. She said that although she couldn’t “rule out cancer”, it was unlikely. Her concern, she explained, was that I was suffering from an atypical infection that invades the lungs of immunosuppressed patients like me. Not Tuberculosis but like Tuberculosis.

She explained that immunosuppressed patients don’t necessarily develop fevers but do experience night sweats and fatigue. I suffer from both, but don’t know if I’m waking up soaked due to Crohn’s or because my lungs are all blurry with white, flowing patches that have no name.

On October 1, I had a follow-up appointment with my gastroenterologist. He’s very nice and funny, but I couldn’t unfreeze my face. This has happened to me before, leading one inflammatory bowel disease surgeon to write in my medical record that I had a “flat affect” (and every time I read that, I still want to punch his face).

I remember the day that prompted this new surgeon to write that I had a “severe reduction in emotional expressiveness”. It was my first appointment with him to discuss a third small bowel resection that I really didn’t want to have. Instead of introducing himself, he forced me to explain my entire history to a resident, letting me believe that this resident was my surgeon. After the resident left, the real surgeon entered the room and forced me to explain my entire history to him again. I was under the impression that this appointment was to schedule the surgery, but he decided to order a series of meaningless tests before operating, costing my family an additional five thousand dollars.

I was told that this man was my only hope to make my third surgery a success and the thought was so angering that I couldn’t breathe. I knew I had to go through with it for my kids–to make their mom “less sick”. I appeared emotionless only because I was trying hard–so hard–not to cry.

I knew that my current GI didn’t deserve to not see my feelings and would worry if I didn’t tell him what I was thinking. So when he mentioned a fourth small bowel resection to correct narrowing that’s giving me daily symptoms, I told him that I felt trapped and overwhelmed. I started to cry as I explained that I couldn’t face another surgery now that I’ve gone back to work and my lungs were rebelling. He agreed immediately and said that he would always support me and would be there to see me through these new challenges no matter what.

The next day I had my bronchoscopy–adding another scope to my name. I woke up coughing violently and didn’t get to see my pulmonologist to ask the million questions I’d stored up for that moment. She told my husband that my airways were clear–which is good news–but that parts of both lungs appear to be infected. She’d “washed my lungs“, injecting saline and suctioning it back out to collect samples to culture. I wouldn’t get to ask her any questions but would once again, be forced to wait.

And here I am, waiting. Wondering. Hoping. Wishing. I’m still dealing with my Crohn’s disease and putting the challenges of “living sick” in its proper place. I’m not ready for another rocky, twisting, and unknown journey.

I’m not ready to add another disease to my name.

[Read "Hurry Up and Wait: Part I"]

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Hurry Up and Wait: Part I

When I was hospitalized for a Crohn’s disease flare in June, an ER doctor interrupted my feverish, dilaudid-induced nap to tell me that my abdominal CT scan had revealed a lung nodule in the bottom of my right lung. When I asked him what it meant, he refused to answer and said, “We are only supposed to let you know that a nodule was found. You need to have a follow-up chest CT in three months to make sure it’s gone.”

And then he was gone, but I was wide awake.

For three months, visions of lung cancer and lymphoma danced in my head. I Googled “lung nodule” and almost passed out. I found out that the reason they recommend a three-month follow-up is to see if the size of the nodule increases, which can be a sign of cancer. I decided that there was nothing I could do about this new and troubling news and I found a way to file the fear into a “do not touch” folder in my head.

At the end of August, I had my follow-up chest CT scan. I realized the irony of being exposed to even more radiation when I had a nodule in my chest that could be cancerous. Because I am always scanned when I have a small bowel obstruction or an intra-abdominal abscess, I now fear CT scans like some people fear the dentist. When the voice tells me to take a breath and hold it, my heart races and I start to sweat.

The radiology tech was brisk and business-like, urging me to quickly hop up onto the hard, cold steel table. She maintained an air of professional competence until the scans were complete. When she left her little radiation-free zone, she was suddenly smiling softly, and she gently helped me sit up on the metal table like I was 90 years-old. I suddenly suspected that the nodule was a giant cancerous mass and she would be attending my funeral later in the year.

I asked her if she could see anything on the scans, but she stuck to the mandated radiology tech script that goes something like, “The radiologist has to read the scans and will send the results to your doctor who will call you.” When she patted my back, I flinched. Something was wrong and it was written all over her face.

But I had to wait. My family doctor is notoriously busy, so I knew I would have to let at least a week pass before following up on the results. I managed to once again file this knowledge in the “do not touch” folder in my head; and I decided to focus on redefining Crohn’s disease remission, while reveling in the fact that my symptoms had settled down for the first time in almost eight years.

Part of me–okay, all of me–didn’t want to know the results. I decided that if I didn’t hear from my doctor, then I didn’t have to worry. This is the exact opposite of what a chronic illness patient should do. If your doctor doesn’t call, that doesn’t mean that something isn’t wrong.

My behavior was childish, reminding me of the time I tried to hide the fact that I was in labor with my daughter. Instead of letting my family know that my water was breaking a bit at a time, I went out to eat with them and insisted on eating a full dinner followed by a piece of chocolate brownie pie. I was convinced that if I didn’t acknowledge it, it wasn’t happening. Let’s just say my attempt to pretend I wasn’t in labor to avoid the pain of giving birth didn’t work for long because my daughter waits for no one.

I almost didn’t call my family doctor to get the results of my lung CT, but my sister reminded me to check every. single. day. I called my doctor on a Friday, figuring she wouldn’t get back to me until the next week, but I was wrong. When she called me that evening at 6:30 p.m., I froze. I had never heard her voice on the phone before. She explained that the scan revealed inflammation through both lungs and scarring where the nodule used to be. The radiologist identified “…multiple other multifocal ill-defined areas of groundglass, reticulonodular densities throughout the right upper, right lower, and left lower lobes.” He concluded that I was suffering from an “…infectious or inflammatory process or underlying inflammatory small airways disease.”

Luckily, the results didn’t mention cancer.

I asked my family doctor what she thought it all meant, and she agreed that it wasn’t likely that I was facing lung cancer. But she said I needed to see a pulmonologist as soon as possible because my immune system has been compromised by Remicade for three years and Humira for another two. Additional tests were necessary to determine if I was suffering from an inflammatory lung disease, or one of the hard-to-treat opportunistic fungal or nontuberculous mycobacteria infections that have killed patients on these biologics. My doctor said she would organize the referral to a pulmonologist and I would have that information on Monday morning.

All I had to do was hurry up and wait.

[Read "Hurry Up and Wait: Part II]

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Walking Two Roads

Now that I’ve returned to work, I feel like I’ve become two different people. One is Chronic Crohn’s Chrissy, who is supported by her wonderful husband and sassy kids because they understand her daily physical challenges; and the other is Conscientious Coworker Christina, a blog writer for a non-profit filled with staff who don’t have rooms reserved at the hospital or have to time their meetings around the toilet. Every moment of the day, I am one or the other, but have yet to be able to exist as both.

I start my days on “The Crohn’s and Ulcerative Colitis Diaries” Facebook page and Twitter, spending two hours reading posts in between packing school lunches and running to the bathroom. I catch up with the friends I’ve made since opening up about my disease on the most public of all platforms–the magical interwebs–and I can’t tell you how much these posts mean to me. To read about the challenges my fellow Crohn’s and colitis sufferers face, and the successes they achieve, is both heartbreaking and heartwarming. But most of all, it’s validating. I take strength from the fact that I’m not alone, and I try to add my voice to the discussion as well as post news articles to encourage the empowering exchange of information. And, yes, I do throw in a gratuitous cat meme from time to time to lighten the day. (And by time to time, I mean every. damn. day.)

When my kids are safely off to school, I put Crohn’s Chrissy on the back-burner and turn on Conscientious Christina (who has zero time for petty things like soul-searing, gut-wrenching fatigue). When I write, I feel at home, shaping words into effective sentences to help support the organization’s goals. When I have to run to the bathroom, or my fingers throb and burn with IBD arthritis, I try to separate myself from my pain so my other self doesn’t come through. I don’t have time to be consumed with what I like to call the “whats” of Crohn’s disease: “What do these symptoms mean?” “What did I eat?” “What can I do to make it stop?” and, most importantly, “What ancient deity did I piss off in another lifetime to deserve this?”

Conscientious Christina doesn’t have time, yet, for Chronic Chrissy, but I know that one day I will have to make room for both. It’s impossible to live as two separate people–to feel closed off from your coworkers because they can’t possibly understand what you’re going through no matter how hard they try. It embarrasses me to admit that I have to go to bed at 8 p.m. to get ten hours of sleep in order to take care of my family and to work the next day. And it’s even more embarrassing to admit weakness and to have to call in sick because I was up all night before, wracked with agony, glued to the bathroom, sweating and shaking because a chronic illness that I never wanted decided to choose me.

How do you navigate your separate worlds? Have you managed to successfully blend your two identities as Working Joe/Jane and Sick Joe/Jane? Or are you like me, walking two roads, your brain trying–but failing–to concentrate on which path to take?

Photo by Danielle Moore

Redefining Remission

Over a year ago, I quit my job and threw myself into wrestling my Crohn’s disease into submission. I was firm in my thinking and knew that I could overcome the worst of my symptoms if I tried hard enough. Even though there is no cure for this often-embarrassing autoimmune disease, Crohn’s patients can achieve a state of “remission” where the disease is not active.

I’ve always been a firm believer in “mind over matter”, and I was anxious to get back to my pre-Crohn’s life with the goal of achieving approximately 10-15 years of peaceful digestion.

Yes, my lovely readers, I can hear you laughing now. What is peaceful digestion, you ask? Well, it’s not having to run to the restroom in the middle of a family dinner after you’ve only taken two bites. It’s not waking up in the middle of the night every single night, running to the restroom before you’ve even opened your eyes.

And it’s not having an accident in public or in front of your children, who consider you one of their strongest heroes.

From the moment I first heard a doctor utter the words, “Crohn’s disease,” I wanted it to disappear. And worse, yet, I thought it was possible. I thought that Crohn’s could become a distant memory because of the hope my doctors gave me.

My first gastroenterologist told me I had “mild” Crohn’s and not to worry about it. It wasn’t a “big deal”. Just take some giant horse pills a million times a day. Others told me that I would achieve remission with the right combination of medications. When that didn’t work as planned, I was told I had a moderate-to-severe case and would achieve remission if I had a small bowel resection to remove scar tissue that was causing frequent obstructions and hospitalizations.

After two surgeries and even more obstructions, I was told by an inflammatory bowel disease (IBD) specialist that my disease was in remission and my problem was once again a “plumbing issue”. When the IBD surgeon opened me up a third time, he was forced to remove over two feet of active Crohn’s disease in addition to the high grade stricture they were after, proving that my disease was not in remission after all.

I was told by another GI that I had stricturing disease, which causes rings of scar tissue that block the bowel, and that I shouldn’t worry about fistulas, or abnormal connections where your intestines create a tunnel from your bowel wall directly to another organ, including your skin. I was also told that my disease would be limited to my small bowel, but then developed a perianal abscess which turned out to be a fistula. The fistula repair required yet another painful surgery and I was really unprepared for how long it would take to sit down without wanting to cry.

After seven years of this, I thought I was the one who was doing something wrong. If each doctor was telling me these hard-and-fast rules of Crohn’s disease and my body was defying each and every one of them, then how could I rely on my body–or my doctors–to not betray me at every turn?

I began to doubt myself, stuck in a dark place, wondering if I would ever find this crazy key to “remission”.

One thing you have to understand about me is that I’m always listening and learning, looking for that one right answer and I’m not afraid to ask for it. When I talked to my gastroenterologists, I took mental notes and framed each conversation as a lecture–as an attempt to learn, to excel at Crohn’s disease. Another thing you have to understand about me is that I jump too quickly at answers, and am not as flexible as I should be in my thinking.

When I went on my quest a year ago, I wanted everything to be black and white–I had no time for that cloudy gray in between.

I also had a very hard-and-fast definition of remission and what achieving it meant to me. It meant that not only would my medical tests come back with zero inflammatory markers, but that I would feel relief from most–if not all–of my symptoms. Now I know that my expectations were unreasonable, and that once Crohn’s disease walks into your life, it will always be with you, whether you are going to the bathroom 15 times a day or not.

In other words, Crohn’s disease becomes a physical and emotional part of you, and to fight the very idea of its ever-changing nature only makes it worse.

This realization’s led me to a more important and valuable remission–one I like to call a “remission of the mind”. My disease will always flare and evolve and surprise me, but I’ve learned to move with it and evolve emotionally each step of the way. I will no longer judge myself for not being able to pass a test that has no grades.

Like everyone else, I’ve done nothing to “deserve” Crohn’s disease, and having a complicated case of it is not a failure on my part. I know, now, that I won’t be able to move forward in life without Crohn’s being a part of my daily steps, and I’m okay with that. Life will never be black and white and there are no hard-and-fast answers. I’ve decided to go back to work, and I’m looking forward to creating a new life in the complicated, yet beautiful, shades of cloudy gray.