IBD & My Significant Other - Part 1

Kelly sat down with her significant other to talk about IBD and answer questions.

Questions and answers

1. How do you spell the type of IBD you have?

Crohn’s disease. This is something that you know really bothers me. I know phones love to autocorrect Crohn’s disease into “crowns”, which also irks me. Recently, it finally stopped autocorrecting from crowns into "Croon's". Even more bothersome.

2. Is Crohn’s curable or is it a case of managing symptoms? What’s worse - the disease itself or the side effects of the medications?

Unfortunately, there is no known cure. But there are quite a few medications that can be administered orally, through injection or intravenously through the course of a timed infusion.

3. What is colitis or what is the difference? I only know “Crohn’s and colitis” word for word from TV ads and pharmaceutical commercials.

Colitis affects solely the colon (or large intestine). My Crohn’s disease is affected from my mouth to my small intestine, large intestine, rectum & just about every other organ in some way as well. People can have Crohn’s disease OR ulcerative colitis. It’s important to know you can’t have both. It’s important that I get scopes every year. They can see if the biologic medication I inject is a) working b) if I need more of a dose & c) if there is any new damage we need to address.

Biopsies can be taken & it can be confirmed through those if you have Crohn’s or ulcerative colitis much of the time. There are cases once a while of “undetermined” & this is where indeterminate colitis and other things that are not as talked about, but they exist. A lot of why I write and what I do revolves around the lack of resources I had readily available to me when I was 17. Providing and helping bring education and resources for questions like this is important and rewarding to me.

4. Can Crohn’s be fatal?

Unfortunately, there are complications that can result due to surgeries, like sepsis, that make recovery exceptionally difficult. The disease itself is not considered fatal. But there are rare circumstances that infections can happen when our immunocompromised bodies cannot fight them off, like the flu. It seems so minute, but the smallest change in our health can impact out disease. We can wind up in the hospital with devastating consequences if help is not sought immediately. In my case, when first diagnosed, I became septic due to Pancreatitis and came an inch away from death. But in rare instances, IBD can be fatal indirectly relating to their disease.

5. What major changes have occurred in your life as a result of living with IBD?

Something many people including family don’t know about me is what I really wanted to do with my life when I was in high school. My disease came as a complete and total shock. What hit me hard was getting a call from the Coast Guard representative explaining to me that due to my recent diagnosis of Crohn’s disease, I would not be allowed into the Guard. I was secretly devastated and until now, have told no one this.

IBD has changed my life in the worst and best of ways. I’ve been able to meet people just like me with very similar stories. I’ve been able to share my story with the world & I’ve completed two half-marathons with Team Challenge. Team Challenge is a group of people who run race courses together, do biking and swim events all in the name of fundraising for better treatment options, and the most obvious, a cure.

The biggest change in my life is work and my financial status. While employed full-time, I had benefits with great insurance (meaning it covered my prescriptions and/or care team/hospital setting). After I lost my job due to the decline of my health and my FMLA time all used up, it was time to make a decision. That decision would lead me to work from home at the convenience of my body’s schedule. This was instead of working total opposite hours of when my disease would be most active. I’m thankful for that part of my life, even though I was heartbroken that decision had to be made for me. I realized how thin I’d been spreading myself. This also allowed me to start a small business of my own and work part-time jobs. This allowed me to work when I wanted to and when my body would allow me to.

It was a major transition for me. One that I had not expected to work out as well as it did. Within a month, I had secured a job that allowed me to work as many hours or as little hours as I wanted to. I truly felt like I landed my dream job.

6. What’s the difference between IBS & IBD?

There are major misconceptions among the general population that IBS is the same as IBD, which could not be further from the truth. Inflammatory bowel disease (Crohn’s disease or ulcerative colitis) actually has the potential to severely damage the cellular level of your intestine(s). IBS - or irritable bowel disorder can be tamed through diet alone. IBS does not damage the lining of your colon or small bowel/intestine, as opposed to IBD, which actually damages the cells of the lining of our organs when we have chronic inflammation.

7. What is your definition of Crohn’s?

Crohn’s is? “A disease of the digestive system, but there as I understand it, there are varying areas that it can occur & degrees of how bad it is”. The hardest thing to explain to a new patient with Crohn’s or ulcerative colitis is that it varies so greatly in every single person. One person’s safe food might another’s trigger food. It is also hard to comprehend how varied the locations of each disease can be, which organs they affect, and the severity of IBD. I usually give people a short elevator speech if it comes up, which helps educate people very quickly.

7a. Is Crohn’s named after someone?

Yes. Burrill Bernard Crohn was a doctor that discovered the actual diagnosis.¹ He did not have the disease himself but certainly proved there was much more to the GI tract as far as diseases go.

In part 2, Kelly asks the questions to her significant other.