Healthy Body
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By Jill Valentino
The summer before my eighth-grade year, I attended a sleep-away music camp at the University of New Hampshire. Unfortunately, during my stay, I experienced an episode of pre-teen camp heartbreak, resulting in intense stomach pains and multiple trips to the bathroom. Or so I thought.
It turns out that the heartbreak of my camp crush choosing another girl over me was not the cause of my digestive issues; instead, I was in the midst of my first flare-up of a progressive autoimmune disorder called Crohn’s disease.
What is Crohn’s Disease?
The Mayo Clinic defines Crohn’s disease as “a type of inflammatory bowel disease [that] causes swelling of the tissues (inflammation) in [the] digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition.” Symptoms of the disease can be severe, mild, moderate or nonexistent. For most people afflicted, there are periods when they experience no symptoms, known as remission. When the disease is active – commonly called a flare-up – symptoms can include diarrhea, fever, fatigue, abdominal pain and cramping, bloody stools, mouth sores, reduced appetite, weight loss, and fistulas, or abnormal “tunnels” in the skin.
The summer before my eighth-grade year, I attended a sleep-away music camp at the University of New Hampshire. Unfortunately, during my stay, I experienced an episode of pre-teen camp heartbreak, resulting in intense stomach pains and multiple trips to the bathroom. Or so I thought.
It turns out that the heartbreak of my camp crush choosing another girl over me was not the cause of my digestive issues; instead, I was in the midst of my first flare-up of a progressive autoimmune disorder called Crohn’s disease.
What is Crohn’s Disease?
The Mayo Clinic defines Crohn’s disease as “a type of inflammatory bowel disease [that] causes swelling of the tissues (inflammation) in [the] digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition.” Symptoms of the disease can be severe, mild, moderate or nonexistent. For most people afflicted, there are periods when they experience no symptoms, known as remission. When the disease is active – commonly called a flare-up – symptoms can include diarrhea, fever, fatigue, abdominal pain and cramping, bloody stools, mouth sores, reduced appetite, weight loss, and fistulas, or abnormal “tunnels” in the skin.
Types of Crohn’s Disease
There are five different types of Crohn’s disease. These are based on variable symptoms as well as regions of the digestive tract where the inflammation can be found, as inflammation in Crohn’s disease can occur anywhere from the mouth all the way to the anus. Ileocolitis is the most common type of Crohn’s, with the inflammation located at the lower part of the small intestine and the colon. Ileitis is similar to ileocolitis but with the additional unpleasant symptom of fistulas developing in the abdomen. Gastroduodenal Crohn’s Disease affects the stomach and duodenum (the first part of the small intestine), and Jejunoileitis affects the portion of the small intestine immediately following the duodenum.
The fifth type of Crohn’s disease, which is the type I am diagnosed with, is known as Crohn’s Colitis. Crohn’s colitis only affects the colon (the central part of the large intestine). Fortunately, I have been able to dodge many of the worst symptoms associated with Crohn’s colitis, such as ulcers, abscesses around the anus, skin lesions, fistulas, and joint pain thus far. Still, I have dealt with the more common symptoms, diarrhea and rectal bleeding, which are also extremely unpleasant.
Managing Crohn’s Disease via Colonoscopy
Over the past three decades, I’ve found the best management tool is scheduling regular colonoscopies. In my 20s and 30s, I did not get colonoscopies regularly, and I was lucky to emerge from that period unscathed. According to my doctors at Hudson Valley Gastroenterology of New Windsor, once diagnosed with Crohn’s, especially after ten years or more post-diagnosis, regular colonoscopies should be standard practice every year or two, without question.
Those afflicted with Crohn’s disease are at an increased risk of colon cancer compared with the general population; therefore, it’s imperative to understand that regular colonoscopies for those suffering with Crohn’s disease can be lifesaving. I always tell myself the following: as awful as colonoscopies may be, not having them would likely be much worse!
Managing Crohn’s Disease with Medication
Beyond regular colonoscopies, most people who have Crohn’s disease manage their condition with medication. Crohn’s disease is a progressive disease that currently has no cure. Its typical onset is at a young age, between 15 and 30 years old (I was very young - just 13 years old). Patients (and their doctors) try to minimize switching medications because, at some point, if you run out of options, the last stop, or “final frontier” if you will, is surgery. Surgery can be relatively risky, with results that might temporarily or permanently alter one’s life (e.g., a j-pouch, ileostomy, or partial or total colectomy).
There are five different types of Crohn’s disease. These are based on variable symptoms as well as regions of the digestive tract where the inflammation can be found, as inflammation in Crohn’s disease can occur anywhere from the mouth all the way to the anus. Ileocolitis is the most common type of Crohn’s, with the inflammation located at the lower part of the small intestine and the colon. Ileitis is similar to ileocolitis but with the additional unpleasant symptom of fistulas developing in the abdomen. Gastroduodenal Crohn’s Disease affects the stomach and duodenum (the first part of the small intestine), and Jejunoileitis affects the portion of the small intestine immediately following the duodenum.
The fifth type of Crohn’s disease, which is the type I am diagnosed with, is known as Crohn’s Colitis. Crohn’s colitis only affects the colon (the central part of the large intestine). Fortunately, I have been able to dodge many of the worst symptoms associated with Crohn’s colitis, such as ulcers, abscesses around the anus, skin lesions, fistulas, and joint pain thus far. Still, I have dealt with the more common symptoms, diarrhea and rectal bleeding, which are also extremely unpleasant.
Managing Crohn’s Disease via Colonoscopy
Over the past three decades, I’ve found the best management tool is scheduling regular colonoscopies. In my 20s and 30s, I did not get colonoscopies regularly, and I was lucky to emerge from that period unscathed. According to my doctors at Hudson Valley Gastroenterology of New Windsor, once diagnosed with Crohn’s, especially after ten years or more post-diagnosis, regular colonoscopies should be standard practice every year or two, without question.
Those afflicted with Crohn’s disease are at an increased risk of colon cancer compared with the general population; therefore, it’s imperative to understand that regular colonoscopies for those suffering with Crohn’s disease can be lifesaving. I always tell myself the following: as awful as colonoscopies may be, not having them would likely be much worse!
Managing Crohn’s Disease with Medication
Beyond regular colonoscopies, most people who have Crohn’s disease manage their condition with medication. Crohn’s disease is a progressive disease that currently has no cure. Its typical onset is at a young age, between 15 and 30 years old (I was very young - just 13 years old). Patients (and their doctors) try to minimize switching medications because, at some point, if you run out of options, the last stop, or “final frontier” if you will, is surgery. Surgery can be relatively risky, with results that might temporarily or permanently alter one’s life (e.g., a j-pouch, ileostomy, or partial or total colectomy).
When I was first diagnosed in the early 1990s, there weren’t many options for controlling a flare-up of Crohn’s disease. The only route for controlling my flares consisted of a course of steroids, followed by sulfasalazine pills for maintenance. However, after about 20 years, that combination stopped working for me, and I had to move on to something else. Thankfully, alternative options now exist in the form of biologics, defined by the FDA as “isolated from a variety of natural sources - human, animal, or microorganism - and may be produced by biotechnology methods and other cutting-edge technologies.” They are administered at regular intervals either at a facility or as an at-home injection delivered mail order by a specialty pharmacy.
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"When I was first diagnosed in the early 1990s, there weren’t many options for controlling a flare-up of Crohn’s disease. The only route for controlling my flares consisted of a course of steroids, followed by sulfasalazine pills for maintenance. However, after about 20 years, that combination stopped working for me, and I had to move on to something else." ~ J.V. |
According to my provider, Dr. Murali Perumal of Hudson Valley Gastroenterology, the first biologic widely available for Crohn’s patients was Remicade, followed by the first biologic I personally ever took, Humira. Both medications have Crohn’s disease listed second, as they were initially formulated to treat psoriasis and psoriatic arthritis. It's an enigma for me how drugs for psoriasis and arthritis were also found to help people living with Crohn’s disease, but Humira did keep me in remission for a couple of years. However, about two years ago, it stopped working. I am now on a newer biologic called Stelara, which is working great so far. I take solace in the fact that not only do I have access to medication that works well for me, but there are new biologics coming out almost yearly which I can try if my current medication stops working.
A Positive Outlook
Living with Crohn’s disease isn’t easy; however, it can be managed with the right doctor, medication, and preventative care. Staying healthy through diet and lifestyle is also essential to keep flare-ups and increased inflammation at bay. Although Crohn’s disease is progressive, new treatments are frequently available. I hope that one day the underlying cause of this disease will be discovered and will lead to a cure.
A Positive Outlook
Living with Crohn’s disease isn’t easy; however, it can be managed with the right doctor, medication, and preventative care. Staying healthy through diet and lifestyle is also essential to keep flare-ups and increased inflammation at bay. Although Crohn’s disease is progressive, new treatments are frequently available. I hope that one day the underlying cause of this disease will be discovered and will lead to a cure.
RESOURCES:
Crohn's Disease (Mayo Clinic)
The Five Types of Crohn's Disease (Healthline)
Colectomy (Mayon Clinic)
Avoid an Ileostomy and Gain Control of Your Life (Cleveland Clinic)
What is Ileostomy? (Cancer.org)
What are Biologics? Questions and Answers (FDA)
Crohn's and Colitis Foundation
Crohn's Disease (Mayo Clinic)
The Five Types of Crohn's Disease (Healthline)
Colectomy (Mayon Clinic)
Avoid an Ileostomy and Gain Control of Your Life (Cleveland Clinic)
What is Ileostomy? (Cancer.org)
What are Biologics? Questions and Answers (FDA)
Crohn's and Colitis Foundation
Jill Valentino is an educator, freelance writer, essayist, tutor, and educational video and teaching materials creator. Her work has been published in Good Housekeeping, Redbook, Country Living, Elle Decor, House Beautiful, Woman's Day, and Hudson Valley Parent magazine. She is a regular contributor for Sanctuary.