CCFA CEO Addresses Hot Button IBD Issues

October 28, 2014 at 3:30 pm 1 comment

There are many hot button issues related to inflammatory bowel disease and when I met with Rick Geswell, president and CEO of the Crohn’s and Colitis Foundation of America, I took the opportunity to address two of them- the use of the word “cure” related to ulcerative colitis patients, and mortality associated with these diseases.

Is an ostomy a cure for UC?

Within the IBD community, use of the word “cure” when discussing ulcerative colitis patients who have undergone a complete colectomy is sticky. There are some patients who feel that they are cured- that removal of the colon means that the disease has been removed entirely (since it is limited to the colon only). However, there are many patients and advocates (myself included) who feel that, while the colon was removed, the issues they experience afterwards- pouchitis, skin problems, malnutrition, and a variety of other issues- does not mean they are cured.

CCFA states that

“Unlike Crohn’s disease, which can recur after surgery, ulcerative colitis is “cured” once the colon is removed.”

They have received a lot of backlash about this statement from the IBD community and patients who have had post-surgery complications so, of course, when I sat down with Rick Geswell, president and CEO of CCFA, I wanted to pick his brain about why the organization opts to communicate that message.

It turns out Rick is bothered by the use of the word cure also.

“Our end game is not to advocate for surgery [as a cure],” he said. “However, once you remove the colon, if you have ulcerative colitis, you don’t have the disease anymore. So technically you are cured.”

In patients with ulcerative colitis, Dr. Deborah Proctor, medical director of Yale University School of Medicine’s Inflammatory Bowel Disease Program, reports that surgery will remove the inflammation caused by the disease, but it will not change the underlying inflammatory disorder and patients can suffer from other complications throughout their life.

“There are complications for many patients [with ostomies], but the vast majority are able to adjust [life with it] and have the other issues treated,” Rick said.

Mortality and IBD

Over the past year, the IBD community has lost several patients due to complications associated with the diseases.

In its IBD factbook, CCFA reports that:

“Death due specifically to Crohn’s disease or its complications is uncommon. However, people with Crohn’s disease have a statistically slightly higher overall mortality rate than would otherwise be expected with the general healthy population. The increase in deaths is largely due to conditions such as cancer (particularly lung cancer), chronic obstructive pulmonary disease, gastrointestinal diseases, (both including and excluding Crohn’s disease), and diseases of the genital and urinary tracts.

Death due to ulcerative colitis or its complications is also uncommon. Most people with ulcerative colitis do not have a higher risk of dying from any particular disease than the general population. However, those with extensive inflammation in the colon are at higher risk than the general population for dying from gastrointestinal and lung diseases (although not lung cancer).”

So why doesn’t CCFA advertise the risk of mortality more publicly?

“We don’t want to scare a population [into thinking] that you are going to die,” said Rick. “We also don’t want to exploit a population or make it sound comparative to breast cancer or other cancers because not that many people will die from IBD [as will from breast cancer].”

It’s a complicated topic to address with patients.

“One [death] is too many- I get that. But we don’t want to be seen as trying to excite a population about something to gain favor, raise money, etc.,” Rick said. “We want to be realistic with patients and deal with the most severe cases [as they arise], but not exacerbate the problem.”

Due to the controversial nature of these topics, I wanted to reiterate that the views expressed by CCFA do not represent my own. If you would like to know if mine fall in line or differ from these, please feel free to email me at caringforcrohns@gmail.com.

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Entry filed under: Advocates, General Disease, Interviews, Treatment. Tags: , , , , , , , , , , , , , , .

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1 Comment Add your own

  • 1. A Guy With Crohn's  |  October 28, 2014 at 3:39 pm

    I would love if CCFA would listen to him and change their wording on their site. It seems like they believe one thing but say another to the general public. So not cool in my eyes.

    Reply

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