Posts filed under ‘General Disease’

Raising Awareness One Day at a Time

Happy Crohn’s and Colitis Awareness Week everyone!

Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.

Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).

In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.

I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.

But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.

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December 1, 2013 at 12:45 pm Leave a comment

Talking About the Hard Stuff

Today’s post is going to be pretty heavy- I am exploring some of the hard stuff (no not alcohol) that we IBD patients and advocates don’t like to talk about.

Most days, I don’t think about how serious Crohn’s disease and ulcerative colitis can be. I see my husband who, after a few rough years, is living a relatively normal life with little pain. Yes, he still frequents the bathroom and yes he still has cramping but compared to previously, his life has changed for the better.

That’s not the case for many people. This past year has been a rough one for several of my IBD friends. In July, one had her temporary ileostomy made permanent after spending a month in the hospital with uncontrollable inflammation and being under the impression that it was going to be reversed. Another had the last several inches of her colon removed two days after doing a half-marathon and has been struggling with issues at her surgery site. A third has been in and out of the hospital over the past few months with partial blockages.

If you live with a mild to moderate form of IBD, you often aren’t faced with the severity of the disease – in some cases, it can be fatal. This morning, I woke up to find out that a member of one of the IBD Facebook groups I belong to passed away due to complications of her disease. I don’t know the full details of her death but I was told that she had a stricture and trouble breathing, called 9-1-1, and by the time the ambulance arrived, she had passed away. She leaves behind two small children and her husband.

Prior to her death, the only one I had heard of was Jennifer Jaff, who passed away in 2012 from Crohn’s disease complications.

More often than not, IBD patients experience complications from their disease. If not detected and treated early, some of these complications can be extremely harmful and in rare instances, cause death.

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October 19, 2013 at 7:21 pm 4 comments

Losing My Religion

Disclaimer: This post addresses a topic that is sensitive for many people- religion. I want to make sure that people know I am in no way trying to advocate for or against any specific religion or trying to preach to you that your beliefs are wrong. Instead, I am just expressing my frustrations with my current relationship to Judaism.

When I was younger, I used to have nightmares during Yom Kippur.

I was taught in Hebrew School that on this day, G-d decides if you live or die in the next year. I took this so literally when I was young, praying to be inscribed into the book of life, actually afraid that I might die in the coming year.

I grew out of that phase quickly but from it I took a genuine interest and appreciation for religion.

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September 17, 2013 at 7:37 pm 2 comments

Anxiety is My Invisible Illness

There have been so many great blog posts for Invisible Illness Week about inflammatory bowel disease that I didn’t have anything else to add! So I decided to go another route and let you all know about who I am and my invisible illness.

There are days where I feel like I am completely losing my mind, where I am so overcome by negative thoughts and desperate for some relief that I wished someone would hospitalize me. Days where the thought of eating, going outside or even talking to my husband make me want to crawl into a cave and hibernate. Days where I am so on edge that I snap at people who I love and people I don’t even know.

Many people don’t recognize that I am “sick” because they can’t see it. My sickness is on the inside, masked by years of practice of concealing any physical evidence of the illness, thus rendering it invisible. But just because you can’t see it doesn’t mean its not there.

The Diagnostics and Statistics Manual of Mental Disorders classifies what I suffer from as code 300.02- Generalized Anxiety.

I’ve been living with generalized anxiety and panic attacks for most of my life. I was always an anxious child – the one who clung to the fence in the schoolyard in first grade screaming about not wanting my parents to leave me alone at school. I was the child who would come home from sleepovers at 11 p.m. because of overwhelming anxiety about being away from their parents, even if it was just down the road. I was the teenager who tried to go to sleep away camp on three separate occasions but called home every day in hysterics (I was never allowed to come home early though). I was the teenager who, after the suicide of her friend, was so overcome with grief and anxiety that going to school became too much to handle.

I was 16 years old when I was formally diagnosed with a generalized anxiety disorder. According to the National Institute of Mental Health,

“people with generalized anxiety disorder (GAD) are extremely worried about these and many other things, even when there is little or no reason to worry about them. They are very anxious about just getting through the day. They think things will always go badly.”

That’s one way of putting it.

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September 12, 2013 at 7:53 pm 2 comments

Back to School with IBD

Sorry for the hiatus again- I am still getting situated into a new commuting lifestyle and figuring out how to balance my time between work and the blog is proving to be challenging. My plan is to continue to blog but I am not sure how frequently it’ll happen. That being said, I will do my best to make the posts that I do write extra special!

The start of the school year reminded me of those days and made me think about all the young kids and teenagers I know who have Crohn’s disease and ulcerative colitis. I don’t have children but I can sympathize what it’s like to go to school feeling different. I spent my junior year of high school in and out of classes because of severe anxiety and agoraphobia that eventually landed me at home for the rest of the school year (I’ll elaborate more on that in another post).

Going to school can be difficult when you have an illness but it can be especially hard when you have IBD. A nurse at Seattle Children’s Hospital recently authored a blog post for the hospital’s website with tips for heading back to school with IBD. The tips were very informative and I wanted to share them and elaborate on them.

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September 7, 2013 at 9:17 pm Leave a comment

Clearing the Air About Crohn’s & UC

There’s been a lot of confusion recently inside and outside of the IBD community on the differences between Crohn’s disease, ulcerative colitis and colitis and whether or not you can have both diseases or not. Because of all the confusion, I asked Dan’s gastroenterologist, the amazing Dr. Deborah Proctor, medical director for the Yale Inflammatory Bowel Disease Program, some basic questions to get some clarification.

What are the main differences between Crohn’s disease and ulcerative colitis?

Crohn’s disease is one of the major types of inflammatory bowel disease. Crohn’s can affect any part of the gastrointestinal tract from mouth to anus.

Ulcerative colitis is another major type of inflammatory bowel disease. Within the gastrointestinal tract, ulcerative colitis affects from the rectum up to the colon (the large intestine).

 What is Crohn’s Colitis?

It is a type of Crohn’s disease that affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others. Crohn’s Colitis does not mean you have both Crohn’s disease and ulcerative colitis.

Can you have both Crohn’s & UC?

No. You either have Crohn’s disease or ulcerative colitis, but not both.

Can your diagnosis change over time?

Yes. Some people are diagnosed with one disease and the diagnosis is changed later in life (my friends like to call this being upgraded). Ulcerative colitis can change to Crohn’s disease; however, Crohn’s disease CANNOT become ulcerative colitis.

Ulcerative colitis is a diagnosis of exclusion- there are no fistulas and it only involves the colon. Once a patient has a fistula, the diagnosis becomes Crohn’s disease.

What is colitis?

Colitis is a generic term for inflammation in the colon. It is often used to describe an inflammation of the large intestine- colon, cecum and rectum. Colitis may be acute and self-limited or chronic. It broadly fits into the category of digestive diseases.

Crohn’s disease and ulcerative colitis are considered types of colitis; however colitis alone is NOT an inflammatory bowel disease.

Are there any other types of inflammatory bowel disease?

Indeterminate colitis- this is a diagnosis given when a doctor cannot tell which type of inflammatory bowel disease the patient has. There is an overlap in some symptoms and sometimes only time will tell which disease the patient has.

How should you refer to inflammatory bowel diseases then?

You can say Crohn’s disease & ulcerative colitis or, alternatively, inflammatory bowel diseases. In theory, you can say Crohn’s disease and inflammatory bowel disease, but in my mind, since Crohn’s is a form of IBD, that seems exclusionary and also redundant. To say Crohn’s disease and colitis is inaccurate. The easiest thing to do is, when talking about both diseases, to say inflammatory bowel diseases and call it a day.

August 9, 2013 at 4:15 pm 2 comments

Tell the Cincinnati Police Department that an #OstomyIsNotATragedy!

Earlier this week, a story came out on WCPO, a local news station in Cincinnati, about the Cincinnati Police Department’s newest initiative to try and deter at-risk youth from entering into a life of violence. Sounds great, right? Well it would be if they weren’t using images of people with ostomy bags as the deterrent. In fact, in the story Lieutenant Joe Richardson says,

“You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention, by limping down Warsaw Avenue with a colostomy bag.”

If that’s not offensive, I’m not sure what is.

Well, the IBD community is fighting back against this distasteful discrimination against those with Crohn’s disease, ulcerative colitis, colorectal cancer and other ailments who live everyday with ostomies and lead full, meaningful lives.

Yesterday, the Huffington Post ran a piece I wrote with Stephanie Hughes from The Stolen Colon about this new initiative and why it’s not okay to further stigmatize ostomates. Here’s a snippet from the piece:

There are more than 500,000 people in the United States living with ostomies for a variety of reasons, including Crohn’s disease, ulcerative colitis and colon cancer. These people live normal lives — they have meaningful emotional and physical relationships, hold jobs, and go swimming, rock climbing, sky diving and every other activity under the moon. Ostomies, for many, are not a punishment — they often mark the beginning of a new, pain-free life.

There is also a petition circulating urging the police department to apologize and stop discriminating against ostomates.

Lastly, we are using the hashtag #OstomyIsNotATragedy on all social media outlets to track people’s efforts to reach out to the CPD and urge them to stop this initiative.

So get involved everyone! Sign the petition and take to the social media universe and let’s all stand together telling the Cincinnati Police Department that an #OstomyIsNotATragedy!

August 2, 2013 at 9:24 am 1 comment

A Baffling Side Effect

We are confused.

In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.

Remicade

For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.

As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).

However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.

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July 23, 2013 at 11:39 am 3 comments

COBRA: My love-hate relationship with insurance gap coverage

When I left my last job, I thought I was going to immediately start on the insurance plan at my current job. Unfortunately I was wrong- there was a month in which I needed to wait before I could become part of my company’s insurance plan. For many people, this wouldn’t be an issue- just go without insurance for a month and then start on the new plan on the first of the next month. However, when you have an autoimmune disease, you shouldn’t have a lapse in insurance- you never know when something is going to happen where you will need your insurance.

For Dan and I, there was a whole other reason for needing to have insurance during that month- Remicade.

Remicade is administered once every 6-8 weeks to people with moderate to severe Crohn’s disease and ulcerative colitis. Dan has been on Remicade since August 2010 and it has been his miracle drug. He goes every six weeks for a two hour Remicade  infusion and that’s it for his medication. Since Remicade is a miracle drug, it has a hefty price tag associated with it- as much as $10,000 per infusion without insurance.

So here’s our predicament:

I left my last job on May 24 and the insurance from that job expired on May 31. Dan was scheduled to get his Remicade infusion mid-June and, while you can push it back a few days, we couldn’t push it back two weeks until we started on my new insurance. And lord knows, we can’t afford the cost of the drug without insurance.

So what could we do?

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July 12, 2013 at 10:29 am 2 comments

Guest Post: Living with an Ostomy

I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.

As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).

Stephanie and I before the half marathon

Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.

Below Stephanie talks about living life everyday with an ostomy.

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June 25, 2013 at 8:02 pm 3 comments

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

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