Talking About the Hard Stuff

October 19, 2013 at 7:21 pm 4 comments

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.

Ulcerative Colitis Complications

There are four major complications commonly associated with ulcerative colitis including perforation (rupture) of the bowel, fulminant colitis, toxic megacolon and increased risk of colorectal cancer.

Crohn’s Disease Complications

According to the Crohn’s and Colitis Foundation of America, there are several major complications commonly associated with Crohn’s disease including intestinal obstruction, abscesses, fistulas, fissures, malabsorption/malnutrition, bile salt diarrhea, and small intestinal bacterial overgrowth.

IBD & Mortality

According to the University of Maryland’s Medical Center, Crohn’s disease is rarely a direct cause of death, and most people can live a normal lifespan with this condition. A study published on the National Library of Medicine’s website states that the overall mortality for Crohn’s and UC has decreased steadily and is currently less than five percent.  That same study reports that mortality is higher if a colectomy occurs early in the disease. Additionally, mortality in Crohn’s disease is greater in males.

The Crohn’s and Colitis Foundation of America states that deaths in those with Crohn’s is largely due to cancer (particularly lung cancer), chronic obstructive pulmonary disease, gastrointestinal diseases (including and excluding Crohn’s), and diseases of the genital and urinary tracts.

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

The Bottom Line

Crohn’s and UC are serious diseases. They can cause rare life-threatening complications; however, death directly caused by IBD is rare.

If you feel off, don’t be afraid to say something. If something doesn’t feel right, speak up. You are your best advocate and you are the best judge of when you need to see a doctor.


Entry filed under: ABC Series, Caregiving, General Disease. Tags: , , , , , , , , , , , , .

Losing My Religion Raising Awareness One Day at a Time

4 Comments Add your own

  • 1. weedimageoftheday  |  October 20, 2013 at 2:50 pm

    With a disease that is as hard to talk about as Crohn’s, I thank you for sharing. It does us all good to be reminded how those with IBD suffer.

  • 2. ryanpstevens  |  October 20, 2013 at 8:55 pm

    Here is another who has died of Crohn’s. No telling what his autopsy might say but it was reported this way in the LA Times:

  • 3. 2013: Year in Review | Caring for Crohn's & UC  |  December 31, 2013 at 11:26 am

    […] Clearing the Air About Crohn’s & UC / Talking About the Hard Stuff […]

  • 4. kyraG  |  March 25, 2014 at 5:41 pm

    Thank you for taking the time to write up this post. I really enjoy how you focus on factual information, stripping away all the BS. Having Crohn’s is difficult enough to wrap one’s head around, let alone try to explain to others; especially since most downplay the effects or complications associated with the disease. I feel like this “mask” put on for the general public’s comfort can lead to individuals not speaking up when they suspect something is going wrong. Thanks again. I’m looking forward to working my way through more of your posts.


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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

Documenting the life of an IBDer, Non-profit Founder/President, Financial Advisor and Triathlete.

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Just a guy living life with Crohn's Disease.


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