What matters to me: living with Crohn’s disease
Jillian Meissner, from Madison, Wisconsin, USA, has been living with Crohn’s disease for 21 years. She works as a compensation manager for Lands’ End, a US clothing brand and is a member of the ICHOM IBD Working Group.
Talk us through your life with the condition so far
I was diagnosed at 11 years old, but it took 10 months for my doctors to reach the diagnosis. In that time I lost a lot of weight, and my parents were very concerned. It was a scary and embarrassing time because of the nature of the condition, and it was not something that I was open in talking about. The first step towards my diagnosis was meeting my paediatrician. We went through every test in the book, such as sweat tests and exercise stress tests for juvenile diabetes—all these things took many months. I was finally diagnosed at the children’s hospital of Philadelphia after a series of upper and lower gastrointestinal tract tests.
What do you remember about how your diagnosis was given to you?
I was in denial. I was a kid, and I thought that this was a terribly embarrassing thing—how would I tell my friends? I remember being angry and thinking that everyone was wrong. Right after I was diagnosed I started a treatment plan of 16 pills a day, but I didn’t stick to it for various reasons. I was young, it was a lot to remember. I was then put on steroids. I thought that this was great because I could eat and feel like a normal person, but they had severe side effects. I gained weight, had difficulty sleeping, and got terrible headaches. By the time I was 16, I had my first resection surgery. At that time, a portion of my intestine was so severely scarred from years of inflammation that it needed to be removed so that the healthy sections could then be connected. Recovery was difficult and required that I be absent from school for about a month. During this time, I had great support from family and friends and it was when I finally accepted that my condition is part of who I am. Since then, I have made the decision not to let my condition get me down, but to find it empowering instead.
What are the things you regularly have to think about during the day relating to your condition?
I am fortunate in that I don’t have to think about my disease too much, and you will probably hear this from many patients who’ve had ileostomies. My ostomy is now just a part of my body. I don’t think of it as a separate thing. I have had a stoma for six years and it has been a life changing experience. At first, it was traumatic because I thought that it would be temporary. However, my quality of life is a hundred times better now because I don’t have the same challenges; I don’t have to think about the challenges of travel or eating in restaurants. My life is normal now, and although there are still days where I have pain or I can’t do certain things, that list has shrunk considerably.
What’s the most annoying thing about your condition?
I worry that people can hear or smell the ostomy, but I wouldn’t call it anything more than a minor annoyance. I think that gastroenterology conditions are tough topics to talk about. In general, these diseases often involve symptoms that can be embarrassing for patients, making it difficult for them to open up. The symptoms are often not visible, leaving the patient feeling as though they don’t “look sick.” However, the more I talk to people without such conditions, the more I realise that people do understand what I am going through, and that they know people who have had similar experiences.
Has anything positive come out of your intense dealings with healthcare?
The main thing that I have gained is perspective; a lot of people have to deal with more inconvenience. I get to travel and I don’t have to think twice about doing that. I can exercise regularly, work a regular schedule and I know that a lot of people with inflammatory bowel disease and other chronic health conditions can’t do these things.
What’s the most and least helpful thing a doctor has done for you?
A doctor who focuses on you is appreciated. With many healthcare professionals I have met, their demeanour has made it clear that I was one of many on their list for the day. A patient knows when you are distracted. I also had a doctor early on who was very firm in how she thought that my treatment should go, to the point where she was quite pushy. As a stubborn teenager, that type of personality did not work for me. However, I had a doctor a few years ago who was magnificent because she would listen to me and support my treatment choices. This was at a point where I had tried just about everything and nothing was keeping my inflammation down, and I refused to go back on steroids. I know that she could have over-ruled me, but she was tolerant of my position and willing to work around it.
What are the most important outcomes of living with Crohn’s?
The most immediate thing for me is to be able to live a normal life. Longer term, it’s important to have a doctor who is a partner in a treatment plan and knows that drugs can stop working or need to be changed.
Also, acknowledging the impact that having Crohn’s has on your mental health is important. It took me a long time to realise this. I don’t think that it was ever a part of my treatment plan when I was younger, but as I have grown older I have realised to what extent a chronic illness can impact someone’s life. An integrated team should be involved—for instance, not just a gastroenterologist, but also a nutritionist and psychologist. Diseases such as Crohn’s still have stigma associated with them, so seeing it talked about more in public helps.
What is your mental checklist when choosing treatment?
What the potential side effects are and how they will affect my life. For instance, will it affect my travel, job, or daily routine, and to what extent? Do the benefits outweigh the negatives? Steroids are unique in the way that their side effects are often visible to the outside world, and this can put patients off. Over the years you build up the confidence and knowledge of what questions to ask. A way doctors can help is to focus on the patient and bring up questions that the patient may not have thought about. For example, when prescribing a drug that required weekly blood tests a former doctor helped to locate laboratories in the cities where I needed to travel for work so that I wouldn’t miss tests. I was able to focus on my work and treatment seamlessly. It made me think that she understood that my disease had to fit into my life and not the other way around.Charlotte Roberts, , ,
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.