12 Years Later: A Letter to My Crohn's Disease

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It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. I managed to stay out of the hospital and control my disease with oral medication until July 2008…fast forward to July 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month.

husband, wife and their newborn son

As August approaches, I always feel a bit of relief. I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure, and one year since I started this blog. Here’s a letter to my old friend, Crohn’s.

Dear Crohn’s,

You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. You demand constant attention and don’t care who has plans, because you do things on your own watch.

natalie wearing 'the mighty' shirt and holding her baby son

You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.” 

I will give you credit though – for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery. You obviously love when I’m pregnant…you tempt me to want a huge family! Even though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful.

mother holding newborn baby in the hospital

You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most of the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for. When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering how I was ever going to live a normal life and work full-time. In the last dozen years, you’ve been with me every step of the way and witnessed firsthand how I’ve overcome each setback, each flare-up, all the scares and all the daily worries. I hope you’re scared of me now.

Here’s to many more years,

Natalie

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Massachusetts Court Rules Employers Can't Discriminate Against Medical Marijuana

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On Monday, Massachusetts’ Supreme Court ruled that employers cannot discriminate against employees who take marijuana medicinally as authorized by their physician.

According to court documents, Cristina Barbuto was fired by her employer Advantage Sales & Marketing, LLC after she tested positive for marijuana on a work-mandated drug test shortly after being hired. Barbuto told her employer she would fail the drug test because she took marijuana medicinally for Crohn’s disease.

In 2012, Massachusetts’ voters approved a ballot initiative for medical marijuana. Under the law, Barbuto was certified by her physician to legally use marijuana for medicinal purposes.

After telling her employer she would fail the test, Barbuto was told her lawful use of marijuana would not be a problem. Barbuto started her first day of work and then, after the results of her urine test were in, was fired for testing positive for marijuana.

Advantage Sales & Marketing justified Barbuto’s firing stating they were following federal laws as opposed to Massachusetts’ state laws, despite Massachusetts being where Barbuto lives and works. Barbuto also testified that she did not use marijuana at work, and therefore, it did not affect her performance.

Because marijuana did not influence her performance and because it is legal in Massachusetts, the court justices ruled Barbuto was protected against discrimination under Massachusett’s state law. Marijuana, they continued, is a “reasonable accommodation,” and the company would have had to provide Barbuto with a medication equally effective to justify their firing.

The court’s ruling does not protect all employees. If Barbuto was a federal contractor or if marijuana affected her ability to perform her job, the court would not have ruled in her favor.

“The decision is not surprising, because of the unusual circumstance here that Barbuto’s marijuana use seems not to have affected her job performance at all,” Mark W. Batten, JD, wrote in The National Law Review. “This decision thus follows the Court’s similar treatment of alcoholism, which is a protected disability as a matter of status, but does not preclude employers from taking action if an alcoholic employee’s illness causes problems at work.”

The court’s decision is considered the first of its kind, which will likely come up again as more states legalize recreational and medical marijuana.

Thinkstock photo via TheCrimsonRibbon. 

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What to Keep in Mind if You're the Friend of a Crohn's Warrior

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To the friend of a Crohn’s Warrior:

Being diagnosed with Crohn’s disease is a life-changer. One that, if not handled properly, can be fatal. Many do not understand the effects of the disease. Some say and think, “Oh, it’s just a pooping problem.” But dear reader, it is not. And others will say, “At least it’s not cancer.” Correct. But it is an incurable disease that progressively worsens and has severe and life-threatening complications. This disease makes one find out who their real friends are. It makes friend groups go from 20+ to not more than five. I, dear reader, am a Crohn’s Warrior. All of this you are reading is true.

 

Being called a “Crohn’s Warrior” is a proud statement; however, it also comes with its own problems. Being a Crohn’s Warrior means you have sat through incomprehensible amounts of pain. Exploded either on or near a toilet (sometimes more than once). Bleeding by the ounce into the toilet. Constant fear of when the next flare will hit. Anxiety from not knowing where the nearest restroom is. And being around people who cannot simply understand without actually having firsthand experience. But being called a Crohn’s Warrior means you are badass. You are able to sit through a full 15 out of 10 pain scale straight-faced. Being in excruciating pain and being able to hide it. Being able to fake being normal. Even though we all (us Warriors) know we are the opposite of normal.

Enough with the meaning behind Crohn’s Warrior. Dear reader, let me tell you what it is like to have Crohn’s.

The problem with Crohn’s is that it is an autoimmune disorder. Meaning that the immune system that is supposed to keep you healthy is literally trying to kill your digestive system. An additional problem with Crohn’s is the disease is invisible. You have passed people in public that have had Crohn’s. You just don’t know it. The only way you know is if the Warrior tells you. The only visible signs to you might be weight loss, loss of skin color, fatigue and the general ill look. The visible signs for the Warrior in addition to the previous listed might be foul smelling and/or bloody stools, diarrhea, joint and eye pain, severe stomach cramping and pain, using the restroom too many times to count. But these aren’t what every single Warrior has. It varies by severity. The Warrior writing to you has Crohn’s from his mouth to his anus. That’s as involved as it gets.

Dear reader, if you think going through that is bad, try not knowing what is wrong for months (I went six months), and having countless tests done all coming back negative. You give up. But that one final procedure figures it out. Months later, a colonoscopy. But even after you are diagnosed, you’re not out of the woods yet. You still need countless tests and medication. That’s if the medication works. You go on a steroid, and you get better. But Imuran that’s supposed to take over doesn’t work. You get worse. Maybe hospitalized. Your doctor wants Remicade. You go on the $18,000 treatment. An IV in your arm every few months and something finally works. It’s about time because the pain medications aren’t working and all you feel is straight pain and diarrhea.

Since you are nearly symptom-free you think you are out of the woods. But you’re not. Friends leave and you get lonely. The ones you do keep rarely have time for you.

The one symptom nobody talks about. Not even many Warriors. Depression. Crohn’s makes you realize who your friends are. And even those “friends” don’t always make time for you. Dear reader, when I got to this point I relied on my dog. The one “person” who I knew wouldn’t leave.

Reader, if you haven’t stepped into your Warrior’s shoes, please do so now.

Imagine having a disease that has complications that can kill you. That’s right. Death. Complications from Crohn’s can kill you. If that doesn’t, then the treatment could. Remicade is an immunosuppressant. While on Remicade you are at a very high risk for getting hospitalized and/or cancer. The simple chest cold to the normal person is pneumonia and fighting for my life in the hospital for me. I have to avoid sick people; it is my new job that I’m not payed to do. But that’s nothing compared to cancer. Colorectal cancer, skin cancer, lymphoma… Now, dear reader, imagine having that in the back of your mind every second of every day. Not knowing if today is your last.

Now that you have seen their perspective, think to yourself, “Would I need support from my friends?” The answer is likely yes. Once a Warrior gets lonely, they may be afraid to reach out to people, for they feel they are a hassle. But in reality they are calling for help.

So do the following for your Warrior:

Check on them, whether in person or over the phone (because they might be crying in the corner like I was). Plan a get-together with them. If they aren’t up to the weather, go to their house and help them feel better. And most of all, don’t let them get lonely. Having to fight your own body is bad enough; don’t let them fight alone. Also try to understand them. Research Crohn’s, ask them questions, ask them what you can do for them. But understanding is the biggest part. Understand they are in pain, anxious and can’t hold their bowels.

Now reader, I can’t tell you everything. Ask your Warrior. Tell them you are there for them. So go find them and hug them (but not too tight) and tell them “I love you.” It will put a smile on their face.

Sincerely,

A Crohn’s Warrior

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How I Experienced Anger in a New Way When Diagnosed With Crohn's

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Since being diagnosed, there is one emotion I have experienced that has surprised me the most out of all the emotions on this roller coaster ride. That emotion is anger.

I have never been an angry person. I’m usually always pretty positive and happy. Even when I’m having a bad day, my first inclination is towards sadness, not anger. It really takes a lot for me to get to the point where I am angry. I very much consider myself an introvert, so I tend to bottle things up and then I need to let it out every so often. Blow off some steam. Not gonna lie to you – that is where curse words can be therapeutic! A lot of you may not understand that, and that’s OK. But it has always been quite a therapeutic tool for me. And when you are in a flare, you gotta curse at something. It’s just how it is.

One thing I have always been hard on myself. I hold myself to unreasonably high standards. I’m a perfectionist in certain aspects of my life. I always tend to beat myself up first before assuming anyone else is to blame. Needless to say, when I was diagnosed back in 2015 and I started experiencing this very real anger inside myself… I didn’t know what to do. It was very new to me – and it felt unhealthy. I was worried about what was going on with me. I was ashamed that I couldn’t put myself above it or let go of it easily. I expected better of myself. I did not like it and that made the anger even worse. Anger is not something I happily invite into my life, but apparently it was something I needed to go through at the time.

What do I mean when I say “anger?” I mean I was angry at myself and blaming myself for everything that was wrong in my life.

Why didn’t I do things differently? How could I have stopped this from happening? Did I make bad choices and this is karma biting me in the butt? Do I deserve this?? I forgot to take my pills! I can’t do anything right! Why do I suck at life??

I was just angry that I had to deal with this disease in the first place. I didn’t want it.

It didn’t stop there. I was angry at the outside world too. Here I thought I was dying and no one seemed to really notice or even care. How dare the earth keep spinning.

The world stops for no one and everyones lives kept going forward, while it felt like mine had come to a halt. People were having babies, getting married, buying houses, getting new jobs. The list goes on, while I felt stuck in a medical trap. How was I supposed to move forward ever again? I would never have a “normal” life again. It didn’t seem fair that everyone else got to just go about their daily lives like normal, like nothing even happened. I felt like all the people around me were taking the simple things in life for granted. They are lucky and they don’t realize how blessed they are to be healthy. I was angry at the world.

Sometimes the emotions would literally surge through me and I would have to physically let it out. I’d want to punch a pillow or just throw something across the room. However, I would usually just tighten my muscles, mainly the legs and feet. Sometimes I’d ball up my fists really tight too.I would tense them up as hard as I could and then release the tension. Usually followed by teary eyes and a very audible “RRRRrrrrrrrr” sound out of frustration.

The writer showing her feet tensed up.

Loss of control at its finest.

One night I’d just had enough. A ton of little things had been going wrong all day. I was at my breaking point and then I received a text message from family. They were very blatantly giving me a guilt trip, because I wasn’t doing what they wanted me to do. That was the final straw. I actually smashed a small nightstand to pieces in the basement.

I was completely ashamed of my behavior, but I felt better getting that bad energy out of me. Afterward, I just curled up in a ball in the corner and cried. My husband just quietly came downstairs to the basement to see if I was OK, and then grabbed a broom and dustpan. He cleaned up the mess. Once he saw I had calmed down he said, “Ya know, if you didn’t like the table you could have just said so.” Of course I laughed with tears and mascara running down my face as we hugged it out.

Looking back now, I know it was just a part of the process. I was grieving. My entire life had just changed and I didn’t have one bit of say in the matter. Old Jana’s life was gone. This new Jana was being re-born and she had to figure out what was going on. What was this going to mean? How exactly was my life changing? And that is all something that just has to be figured out as you go. Especially since this disease effects everyone differently. But I can say with certainty that I never in a million years thought that I’d see myself go through anger like that. It’s amazing what this disease will bring out in us. Just know that you are human, and it’s only normal to have an emotional reaction to a big life change like a Crohn’s disease diagnosis.

I sought professional help when I felt things got too hard emotionally. I was in therapy to work through a lot of the feelings like this that came up during my diagnosis. If you experience anything similar to what I have mentioned in this blog post, I strongly recommend seeing a medical professional and/or mental health professional. You don’t have to do this alone, and you shouldn’t. You deserve a better quality of life.

What is the most surprising emotion that you have experienced during your diagnosis?

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Thinkstock Image By: Tatomm

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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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Thinkstock photo via HASLOO.

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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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Thinkstock photo via monkeybusinessimages.

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