Posts filed under ‘Treatment’

Not Just a Pooping Disease: 10 Things You Didn’t Know About Inflammatory Bowel Disease

I recently had the privilege of working on a piece for the Huffington Post with Stephanie from The Stolen Colon for Crohn’s Disease and Ulcerative Colitis Awareness Week. The piece posted today and I wanted to share a snippet from it with you:

These diseases have been known primarily as “pooping diseases” because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.

Here are 10 things you didn’t know about IBD:

IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.

While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

IBD causes extraintestinal issues.
Crohn’s disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

IBD can have significant impact on the mental health of patients.
According to Oak Park Behavioral Medicine, about 25 percent of people with IBD will experience depression even when in remission, and that number rises to 60 percent during a flare. Outside of depression, the Crohn’s and Colitis Foundation of America reports that patients with IBD often experience anxiety, denial, dependence, stress and poor self-image.

Having IBD is exorbitantly expensive.
The annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn’s was $8,265 and for ulcerative colitis was $5,066. Each patient’s situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.

You can view the full piece here.

December 6, 2013 at 4:51 pm 3 comments

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

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

CCFA Releases Research Progress & Goals

Today, the Crohn’s & Colitis Foundation of America released its “Challenges in IBD Research” report outlining what’s been accomplished in the field of research over the past five years and what they hope to accomplish in the future. The last report was released in 2008 and since then, lots has been accomplished in the field of research.

The previous report detailed findings from 2004-2008, including the identification of genes for IBD; a better understanding of the relationship between the immune system and gut bacteria; the discovery of cells that drive and regulate immune responses; and a better understanding of how the immune system keeps stability in the lining of the gut. All of the below information has been pulled from the study’s Lay Summary.

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April 18, 2013 at 8:48 pm Leave a comment

Guest Post: The Silent Battle Before an Ostomy

Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.

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April 17, 2013 at 10:50 am 1 comment

IBD & Migraines: Increased Risk?

Did you know that people with inflammatory bowel disease may be at a higher risk for migraines than those without the diseases?

That’s what a new study from researchers at Columbia University are reporting.

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March 2, 2013 at 7:46 pm 2 comments

Come Friday, Patients Will Begin To Feel Impact of Sequestration

Sequestration is the buzz word lately.

With the $85 billion in spending cuts set to hit the government, and subsequently all Americans, March 1, it’s time to learn how this will really impact health care.

The unfortunate thing is that there are very few real details out there about the sequester, and as we all know, the devil is in the details. All that is available is estimates as to how it will impact federal agencies and the states as a whole. But there’s no doubt that health care in the country will suffer if our leaders don’t figure things out by Friday.

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February 26, 2013 at 9:40 pm Leave a comment

Transplant for patients with severe Crohn’s?

Over the past few months, I’ve written posts about all sorts of new treatments being studied for IBD- bone marrow transplants and whipworms to name a few. Those sounded a little crazy to me but definitely intriguing. However, a new study published by the University of Pittsburgh Medical Center suggests that intestinal or multivisceral (three or more abdominal organs) transplants are effective treatments for patients with Crohn’s so severe that they no longer tolerate an IV nutrition.

As we all know, when Crohn’s is severe, its hard to absorb nutrients or even eat. For those who have irreversible intestinal failure, they may need to receive nutrition through a tube intravenously, known as total perenteral nutrition. According to the study, those who do not tolerate the IV nutrition are often referred for an intestinal transplant.

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December 17, 2012 at 7:28 pm 1 comment

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The Caged Bird Still Sings

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