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When a Doctor Dismissed My Crohn's Diagnosis Because I 'Looked Nervous'

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I went from the best care…to being discounted.

I finally got insurance after my college graduation and I think my body decided for itself “now you shall discover what has always been wrong.” I have suffered from “stomach issues” (digestive problems such as constipation, diarrhea, nausea, etc.) my entire life. Thankfully, I found a wonderful gastrointestinal specialist who listened to me. He prescribed tests… Endoscopy, colonoscopy, barium x-rays, CT-scan (which I found out the hard way I was allergic to the contrast), sonograms…to no avail. He could not figure out what was wrong. He suggested a small bowel enteroclysis.

 

Dr. M. prepped me by saying it’s not the “nicest” of exams but he thinks it may lead to answers. He was right, on both accounts. The exam was awful. The scope hurt. It burned my nose…it was painful. Due to my digestive problems, the barium did not fully digest. To assist the barium’s movement, the doctor, the assistants and nurses shifted the table, scope in place, positioning me upright. I felt like Frankenstein. And rather than the estimated two to three hours given to me pre-exam, the enteroclysis in all, took eight hours.

It was worth it! Dr. M. discovered Crohn’s in my ileum. Finally I had an answer. I had a chronic autoimmune disease with a name. And I finally had treatment options. Dr. M. listened to me, had great bedside manner and helped me – the definition of a great doctor. I stayed with him for years.

Unfortunately, the time came when Dr. M. decided to give up private practice and go back to hospital work.  This meant I had to find a new GI doctor. And at this same time, my insurance changed and I was right in the middle of a Crohn’s flare and needed a GI specialist, ASAP. A nightmare for a person with Crohn’s disease. I found out soon enough it was just the beginning of the awful dream.

My PC recommended a new GI within the practice, Dr. G. This new gastroenterologist was perfect…on paper. Problem was from the start he did not believe me. The moment he set eyes on me he pre-determined everything. Even with my records, he did not believe me. Dr. G. said I was so visibly nervous, I must have a delicate system. He diagnosed, without examining me, irritable bowel syndrome (IBS) as opposed to inflammatory bowel disease (IBD).

I was terrified by this easy dismissal of my pain, which in turn, made me more nervous. Dr. G. even dismissed the enteroclysis test results from Dr. M., my former doctor, because, he said, “That exam is archaic.” Dr. G. scheduled a capsule endoscopy so he could examine my ileum.

For the results, I brought my husband into the office with me. I felt the doctor treated me differently with my husband present. Never in my life had I been made to feel so defenseless with a doctor. And then things changed. When the outcome of the capsule endoscopy backed the original diagnosis, Dr. G. apologized to me. I was actually crying with relief. But I also felt empowered again.

I took my newly re-diagnosed self and found a newly competent on all levels doctor… Dr. K.

I wish I had been healthy enough to put Dr. G in his incredibly insensitive place but fact was I needed him. At one point, when he said to me, “Are
you always this nervous?” I said to him, very pointedly… “You know, I had a baby by C-section and this pain from the Crohn’s is much worse than that.” Dr. G. had no answer. He had no reference. I wonder if in his mind he thought childbirth was archaic too. It is one of the worst feelings when the person who is supposed to help you makes you feel worse.

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When a Nurse at the Infusion Center Asked Someone Why I'm 'So Skinny'

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Words hurt. They cut deeper than we often give them credit.

I have had a very rough year. It started with a C. Diff infection that we didn’t discover until February. My health went downhill fast. I was then hospitalized. They found more problems. Ulcers. Bleeding. All of this because of my Crohn’s disease.

 

And all the while I would go to the cancer center to get my infusion. That’s when the words hurt.

She was the registration tech behind the counter with false smiles and polite tone. She asked someone I know, “Why is she so skinny?”

I wish I didn’t know there are people who wish for those comments. Yes, over the six months plus that this tech has seen my face, I’ve lost weight. A scary amount of weight. But in that moment I felt reduced to nothing more than a number. My worth downgraded to a number on a scale.

I know I’m too skinny. I’ve faced the reality. But in that moment I decided to fight for others and myself who felt judged and confined by society’s idea of weight. That it’s acceptable to make unwanted comments.

I wanted to remember I can get better. That all bodies are beautiful. And healing take place when there is support and positivity.

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My Fighting Words for Crohn's Disease

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Once I received the news of my diagnosis, my life view began to change. The disease was turning my life into something I didn’t want to live and me into someone I didn’t want to be. I had to call off work many times due to sickness. I was missing a lot of family gatherings and social outings with friends. I spent a lot of time at home just trying to deal with all the symptoms and side effects that each new day would bring.

I was experiencing anxiety about just leaving the house for fear I would need a bathroom and not be able to make it to one. But what bothers me the most was that I couldn’t keep my commitments or do the things I enjoyed doing. I’m a very independent, self-sufficient person to begin with and I value sticking to my word. But then enters Crohn’s, ready to teach me a life lesson –  I’m not in control.

Crohn’s was making me focus my attention on all things medical, leaving little room for anything else. That can get really depressing, really fast.

I remember looking into the bathroom mirror one day at work and I didn’t recognize who was looking back at me. I didn’t recognize myself at all, in fact, I was sure I was seeing someone else. My color was gone, cheeks shrunken in, and deep dark circles under my eyes. I looked like death. It felt like I was dying before my very own eyes and there was nothing I could do but watch. Almost an “out of body” experience. It was horrifying!

Truthfully, all I could think was, “This isn’t what I asked for! This isn’t what I wanted my life to be like!” Even when I was in the hospital, both times with the most excruciating stomach pain ever, I remember saying out loud, “I don’t want it! Make it go away!” Looking back, I laugh. As if for some reason, saying the words, “I don’t want it!” really would make a difference. Psshh! Like the inflammation in my body cares what I want!? Silly Jana! But, I realize now, those are fighting words. As long as I am saying, “I don’t want it!” I know there is still fight in me and I intend on giving this disease a run for its money. That’s all it takes –  that one little ounce of fight in you.

Woman looking down seriously.

So, I began spending all of my free time researching Crohn’s disease so I could understand as much as possible about what was happening to my body, and in turn, my mind. I wanted to learn everything I could in hopes of having a better quality of life. I used the Crohn’s and Colitis Foundation website as my go-to resource for everything as my doctor suggested. I requested all their materials on treatments, diet, etc. and I joined their online support group to hear from others about their experiences.

I saw something I didn’t want to see in the mirror that day and it was terrifying. But it took that scare and it took all that pain I’ve been through to get me where I am now. It’s those moments that motivated me to seek knowledge about my disease and support. It also motivated me to be a more active participant in my own healthcare. I would call the nurse when I was experiencing symptoms or side effects and we would address the issue head on. I began working with my team of doctors, keeping everyone in the loop about my condition. It’s the best thing I could have done for my health, and for my peace of mind too.

This disease may take us through a really rocky ride – depths of depression, breaking points of pain, and it might even make you face your fears. I truly believe that it’s only during those lows that we find our strength time and time again. So, next time you feel those familiar feelings of sadness and disappointment that come with a flare, say to yourself, “I don’t want it!” You might laugh, which is good – but you might also find your fight… And that is something I wish for all of us. To keep fighting and pushing for that better quality of life that we all deserve.

Follow this journey on The Jana OWLF Blog.

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What I Really Need You to Understand About Life With Crohn's

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Think about the last time you were really sick. When you had a fever or nausea and couldn’t even pull yourself out of bed because you were so weak.

Now think about a time in your life when you were in pain – maybe a sports injury, a really bad headache, or a recovery from surgery.

What if you experienced both that illness and pain at the same time? You would probably take time off work and stay in bed, or at least modify your life for a few days while you recovered, right?

Think of the last hard day you had. Maybe you were reprimanded at work or your kids were particularly difficult or someone close to you betrayed you. Now imagine going through that day all over again… while also sick and in pain. Really think about it.

Imagine that you feel that kind of illness and pain most days, but instead of staying in bed, you have no choice but to go to work, to school, to church, and to family gatherings. And you do this not just for a week or two, but day in and day out for months, and maybe years.

On top of it all, you find that if you talk too much about not feeling well, you’re labelled a complainer. But if you repeatedly back out of plans at the last minute and don’t tell people how sick you are, they assume you’re just a flake and undependable. You feel anxious about how people are perceiving you and this anxiety, mixed with the energy, demands of being in pain and sick all the time, makes you extra sensitive (and if you’re like me, you’re a sensitive person to begin with). You don’t have the energy to filter your thoughts. Sometimes when your friend complains about his long work hours, you just want to scream, “At least you’re healthy!” And sometimes that resentment comes out in half-joking sarcastic comments… You feel bad because his problems matter too. But you also feel kinda justified. After all, you have all of life’s “regular” problems, but you’re sick on top of it.

You feel like people are judging you – for not doing enough, for doing too much, for not doing things the way they would, for sharing too much, for not being real enough, for all the things you do on your good days. And for every text or phone call you don’t answer because your arms are too heavy to pick up the phone on your bad days. Unsolicited advice about diets and procedures abounds. You somehow manage not to snap at people even though it feels like they are blaming you for being sick. If only you did this or that, you would be better. Why aren’t you trying harder to get better?!

You spend a day curled up in a ball on the bathroom floor and someone is upset because you didn’t show up at the school picnic. You take some painkillers and force yourself to go to church on Sunday and someone is upset because you didn’t mingle enough after the service. You feel halfway decent one day so you put on some makeup and go out. You laugh and talk and look pretty normal. It makes everyone wonder if you’re really as sick as you say you are. If you push yourself through the pain to do the things that are really important to you (like take your kids on a family vacation), people expect you to push yourself through the things they think are important too. Things that may or may not be worth the pain to you. Sometimes it feels like you can’t win.

Imagine that one night, you’re up all night with what I like to call “pain-somnia.” You finally give in and take your pain medication around 5 a.m. and fall into a drugged sleep. The next day, you are really groggy and exhausted. On top of it, you’re still in pain, but you have a million errands to run. You feel a bit guilty for sleeping through the morning routine with the kids, but you’re eternally grateful that your husband is so kind and capable. You literally crawl from the bed to the bathroom, take a hot bath, throw on some sweat pants and head out. Every. single. step. you take sends a shooting pain through your entire body, but you manage to get through most of your errands, which include grocery shopping, buying a birthday card for your mother-in-law, and picking up food for the guinea pigs.

You bump into a mom from the kids’ school and she asks if you’d be willing to volunteer in class next week. You want to say yes, but you know you can’t commit to anything. You learned long ago that class trips to the museum and diarrhea do not mix. You question whether you need to explain, but in the end you just say you’re too busy. You can tell she’s not impressed with that, but you’re pretty accustomed to being misunderstood at this point. Her judgment hurts, but you’ve got bigger fish to fry.

Just as you are on the way out of the pet store, it hits. Your stomach is churning. You have to go to the bathroom. Right. Now. You make a beeline for the restroom (of course, you made a note of its location immediately upon entering the store) and get sick. It hurts so much that for 10 or 15 minutes afterwards, you can’t stand up. You just sit there on the edge of the toilet with tears streaming down your face, waiting for the pain to subside enough to walk. An employee comes in and asks if you’re alright and you crack some joke as though the whole thing is just hilarious. She can’t see your tears through the closed stall door.

When you finally get home, you just want to lay down, but your son needs your help to fix his broken helicopter (you promised!) and your daughter is upset about something that happened at school and needs to talk. Dinner needs to be made and the house is a mess from everyday life. You pop a couple more pills and hope that they will help you make it to the end of the day. You snap at the kids more than they deserve. You feel guilty, but promise that you’ll make up for it on your next “good” day. Hours later, you find some relief by soaking your sore body in a hot sitz bath and crawl into bed around 9 p.m. You feel guilty because you realize that your husband took the kids to school in the morning and put them to bed for the third time this week.

Your phone beeps. Jennifer wants to know why you weren’t in class tonight.

It beeps again. Your mom. She misses you and wants to know if she can call tomorrow. That’s sweet. You’ll call her from the car on your way to your doctor’s appointment downtown. You try not to feel anxious about being stuck in the car on the highway for an hour with nowhere to poop if it hits. You make a mental note to make sure you’ve got some toilet paper in your purse in case you have a side-of-the-road emergency.

You close your eyes. The pain is back. You can’t afford to be groggy when you drive tomorrow so you try to sleep without medication. It’s not working. You think some distraction might work so you pull out your laptop and open up Netflix. Right in the middle of an episode of Shameless, your son comes into your room for his 27th hug of the night and, in a sweet, sad, little voice points out that you said you were sick and needed to sleep, but you’re just watching TV. There’s the guilt again. You try to explain, but this 11 year old doesn’t really do the whole empathy thing very well. Eventually, you get frustrated and make him go to bed. You feel like a total failure.

Imagine this is your life. Not just once in a while, but every week. All. the. time.

I’m at a place in my life and in my illness now where I really need the people in my life to understand how sick I am. For the sake of our relationship, I need you to understand that I cannot keep up with the demands of life the way a healthy person can. I have to make choices that “regular” people don’t have to make. If I go to that pool party or family function, I will spend the entire next day recovering, which means I’ll have to give up something else. I can’t do it all. If you place the same expectations on me that you place on a healthy person, you will be disappointed. And I’m afraid you will come to resent me.

So friends, classmates, family… I’m not asking for practical help (not today anyway). I’m not asking you to bring us meals, watch our kids or hire a house cleaner (although I won’t say no to any of that if you offer!). What I really need from you at this point is your understanding and grace. I need you to lower your expectations. I have kids and a job and I know it’s hard to understand because of everything I do and because I look “normal” on the outside, but the truth is, I am not like everyone else. I am sick. Please, please… go easy on me. And I’ll try to go easy on me too.

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I May Be in Remission, but I Still Carry the Burden of Fatigue

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Just because you have objective truths fueling your fatigue doesn’t make it any easier to accept.

I am in remission, in essence. But that doesn’t mean I’m healthy. It means my CRP levels are acceptable. My ferritin isn’t too bad. I don’t have urgency that inhibits my movements day-to-day. I go to the bathroom more than average but that’s partly because I have less intestine than average. Four or five trips a day is fine for me. There’s no blood, no mucous, infrequent cramps, relatively infrequent full-blown diarrhea.

But my bones ache. Arthritis can be a secondary symptom of IBD, or it can develop as a result of the medications. It’s hard to tell whether non-intestinal pain is related to Crohn’s, meds or something else making the most of my weakened immune system.

 

I get through the working week. The stress, the extra hours, the fear that I’m not doing things properly. I work full-time, so things must be all right.

But I pray for seats on the train because I feel like I might pass out if I stand in the packed carriage for too long. I spend too much money on food, for all meals, because I rarely have the energy to cook dinner, let alone make sure there’s enough for lunch the next day. And if I do have the energy for cooking, I still hesitate, because I might not have the energy to clean up after. And is a cooked meal worth it if the after effect is insects that your flat seems predisposed to hosting because the dishes and components were left out after the fact?

I feel exhausted at work, and tasks take longer than they should because I can’t concentrate properly. I drink coffee that half helps, half hinders. I live in a constant state of anxiety that I can’t do things properly, that pouring all my energy into work leaves so little to draw upon in my own time.

I say yes to things I believe in and then don’t do enough for them. Helping with the Crohn’s & Colitis Support Group for Auckland, because I need to give back and make sure that people know what help is there for them. I feel a responsibility to make the most of the fact that I come from a place of medical privilege, if that makes sense, in that I have a deeper understanding of the science and the systems and of what you’re allowed to ask for and say no to than some. I feel the need to help people advocate for themselves. Because it’s so hard.

I touch my hair and wonder how long since I washed it, feel revulsion at whether I’ve managed to have a shower in the last 48 hours. If I don’t do it as soon as I get home, it’s all too often too hard to get up and do it.

I feel guilty when I cough, sneeze, wheeze at work. I come down with things worse than anyone and it lingers…and the dry air and the great numbers of people mean I’ve become an incubator for every cold or malady that comes by. Corporate life and chronic illness are not great bedfellows.

I joined a gym and haven’t gone in several weeks. When I get home from work, I just don’t have the wherewithal to go out again. I lie down. I try to make sure I’ve preemptively gotten my things together for the next day, so I can sleep in as late as possible. That’s one thing I do have down to an art – the quick turnaround morning. Get up. Get dressed. Go to bathroom. Leave. But if I haven’t prepped gym gear the night before, the chances of getting my act together are slim to none.

But the gym’s got a new class schedule launching this week. So perhaps I’ll review it, perhaps the stars will align and I’ll put a yoga class in my phone calendar and hope for the best. Maybe, now that it’s winter in my hemisphere, I’ll bust out the crockpot and make something rich and comforting and able to be frozen in large batches. I might allow myself to take a sick day instead of percolate in the petri dish that is office life. I could start saying no to invitations – or reconfigure them to be on my body’s terms.

I could do these things. I may yet do these things. I know the options are there. The next step? To keep that list of maybes running through my head, so that when I see an opening in my day, a window of opportunity where I can think about me and more importantly act on it – I can start those processes of rebuilding. And even if it’s just a few hours of unexpected whizz-bang energy, those might mean a new series of asanas I can keep tucked away, or a freezer full of stew. And that, Future Self, is something that will lessen your burden.

This post originally appeared on Briar’s blog.

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9 Things I Want High School Students Diagnosed With Crohn's to Know

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To the high schooler recently diagnosed, I was once in your exact shoes. June 2013 I just finished up my freshman year of high school, but it was at that time that I was diagnosed with Crohn’s disease. I was scared, I didn’t know what to do next, and I felt alone, but through these past few years, it’s taught me so much. Here are just some of the things that I’ve learned since my Crohn’s diagnosis that I wish someone told me…

1.  You are not alone.

I know, my guess is you’re tired of hearing this by now and you might doubt it. You probably feel like the weight of the world is on your shoulders and no one “gets it,” but the truth is, you have millions of people around the world who have your back who “get it.” We were at one point or another in a situation very similar to yours.

2. Ask for help.

As hard as it may be, once you take that initial step in asking someone for help, you’ll feel so much better. Find a teacher, school counselor, coach, music teacher… find someone you can trust and fall back on when you are overwhelmed. There’s a good chance you’ll miss some school and having someone who will always be there for you, who’s room or office is always available, will make this transition so much smoother. I would not be the person that I am today if it weren’t for some of the people in my life who I put my trust in when I was first diagnosed.

3. Your health comes before everything else.

You may not finish your homework from time to time, or have to be benched for a basketball game because you are too sick for practice, but trust me – it’s better that way. Take care of yourself first so you can get back to being the person you used to be. One game isn’t the end of the world, neither is one bad grade. I know it’s easier said than done, but soon you’ll realize it’s not worth pushing it to the extreme.

4. Get a 504 plan in place.

Ask your doctor about having a 504. This will cover any accommodations you may need in order for you to be the best student that you can possibly be. Not only will it put accommodations in place, but it will also help teachers understand what you need from them to help you succeed as a student. If you don’t feel comfortable talking to them one on one, send them an email or write a note letting them know what you need from them.

5. Form a relationship with your school nurse.

The school nurse will end up being your best friend when you’re in a flare. They will have your medications on hand, heating pads, a cot to sleep, and most importantly a private bathroom. Your health comes first and sometimes that means hanging out in the nurse’s office for a period or two. The nurse gets it, and she’s there to help you

6. Find a hobby.

Find something that will keep your mind off of your inflammatory bowel disease (IBD). Although some days you’re too sick to get out of bed, there will be plenty of days when you can be a “normal” teenager. Find something that you enjoy and that you are good at. Find something where you can have victories when this disease seems to constantly beat you down. For me, music was my escape. My voice lessons each week were my escape from reality; music consumed my life. Even when I was too sick to actually sing, I’d still go to my lesson. It was my safe place, my escape, a place where I could be myself, even when my Crohn’s got in the way.

7.  Don’t be afraid to cry.

Everyone needs to cry from time to time, even you. Life sucks when you have IBD and I get that. Don’t bottle everything up, or you’ll end up like me… losing it in the middle of NYC while waiting for a bus in the freezing cold, while your voice teacher is holding you and assuring you that it’s OK to cry (but that’s another story). It is OK to be scared and it’s OK to be frustrated, so cry. Cry in the shower, in the middle of your calculus final, or with a trusted friend at Starbucks. Just always know that things will get better and soon you’ll get back on track on this journey through life.

8. Speak Up.

Speak up for your health and for your personal well-being. When you go to a doctor’s appointment, make sure to tell your doctor everything… not your parents, you! This is a disease that you are living with, not your parents. You are the only person who truly knows how you are feeling. Along these same lines, if you don’t agree with your doctor let him or her know what you are thinking. My doctor told me I was in remission, but deep down I had a gut feeling that I wasn’t. One week later and I was admitted to the hospital in a full flare. Yes, medicine works wonders today, and the technology doctors use is amazing, but there are times that the blood work or scopes may miss something. Your gut feeling nine times out of 10 is the right feeling.

9. You’ve got this.

You so got this! Every day is another step closer to victory. Another step closer to being in remission. You have to fight for it, but you’ve got this. Every trip to the doctor, every surgery, the monthly blood work, the daily meds, and you’ve still got this. You are going to shine in this world because you’ve been faced with this challenge. Whatever life throws your way you can tackle. You are going to look back years from now and be thankful for this bump in the road. For the rest of our lives we’ll be fighting this disease, but for the rest of our lives, we’ll also be unstoppable.

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