The Truth About Crohn's Disease: Dispelling the Myths
Most people today have heard of Crohn's disease. Perhaps they have it themselves, or they know someone who does; and yet, this condition is still very difficult to diagnose. Twenty years ago, it was almost impossible. That's when I was first diagnosed, and at that time, I had been living with the disease for over 6 years.
What Is Crohn's Disease?
Crohn's disease is an inflammatory bowel disease. There are currently two thoughts as to what causes Crohn's:
- Autoimmunity: The body's immune system malfunctions and attacks the cells of the gastrointestinal (GI) tract—anywhere from the mouth to the anus.
- Genetics: There is evidence of a genetic link because it tends to run in families. However, environmental factors are also thought to play a large part.
There is currently no known cause or cure—be it pharmaceutical or surgical. Treatment options are restricted to managing symptoms and preventing relapse. When I was first diagnosed, I needed surgery to remove a small section of my small intestine. Twenty years later, I have now had over 12 surgeries—eight small bowel resections and four for other complications—and I'm still not cured.
My Experience With Crohn's Disease
I started getting sick when I was 13. That's when my symptoms first started appearing. I would have joint pain and swelling in my hands and feet. I was experiencing stomach pains and was tired all the time. I always felt ill, and my doctor had no idea what was happening. Thank God I had a wonderful family doctor and parents who just wouldn't let it go until someone figured out what was going on.
I was sent to see doctor after doctor and specialist after specialist. I was given every test you can think of and was diagnosed with everything—from juvenile arthritis and lupus to kidney disease and leukemia. I was even sent to a child psychiatrist because if multiple doctors haven't been able to figure it out all these years, it must be in my head!
I was finally diagnosed, incidentally, while I was undergoing yet another test for lupus. They gave me an "upper G.I and follow through" This is a procedure in which you drink barium while the radiologist takes a series of X-rays to track the barium through your digestive tract. This is a minimally invasive procedure that allows them to see any problems in your gut without scopes or probes. They spotted a narrowing in my small intestine that they attributed to Crohn's disease, the cause of my mysterious pains and illness. Something was wrong, and I was elated to know that I wasn't just going crazy.
Myth #1 — Crohn's Can Be Cured by Eating a Special Diet
There Is Currently No Cure for Crohn's
This is simply NOT true, and as a person living with the disease, I find this offensive. There are so many books out there in which the authors claim their diet can cure Crohn's disease—that if you stay away from this food and eat that food, you'll never have symptoms again. They all claim that thousands have followed their diet and have been cured already. In fact, it's gotten to the point where everyday people will tell you, "I know someone who had Crohn's. He doesn't eat anything with—insert ingredient here—and, now he's cured.
The Disease Most Likely Went Into Remission
I'm not saying that it's all a complete lie, but there is a difference between curing a disease and going into remission. Everyone is different. Some people will have an attack, then go into remission—maybe for several years—while others may never go into remission, will experience every complication, and may even die from them. The majority of people, including myself, will fall somewhere in the middle.
Maybe these people didn't even have Crohn's disease, to begin with. It may have been irritable bowel syndrome or some other temporary intestinal upset. Since Crohn's is a chronic illness, these people most likely did not cure the disease. It's more likely that they were able to manage their symptoms, but those symptoms will be back sooner or later.
The Final Verdict
Yes, certain foods can aggravate the illness, causing more inflammation and irritation. Avoiding these foods will help you reduce your symptoms and manage the disease. If you no longer have the symptoms, are you cured? Unfortunately, that is not the case. If it was as easy as watching what you eat, why do people still have it, and why do more and more people get it every year?
So, what should you do? Watch what you eat, and avoid foods that seem to irritate you. This will help you reduce your symptoms, but don't think that you are cured.
There is no known cause or cure for Crohn's disease.
Myth #2 — Wheat and Junk Food Will Worsen Symptoms
Each Person Will Have Their Own Set of Triggers
Building on the first point, Crohn's disease affects everyone differently. Certain foods can aggravate one person's symptoms but will not affect another person. This is why there is no miracle diet or a set list of foods to avoid. If you have Crohn's, you'll learn very quickly what foods give you severe bouts of pain. In my case, I have a hard time with certain vegetables, salads, pasta, and even watermelon. I actually have no problem eating meat or junk food.
Severe Cases of Crohn's May Require You to Avoid All Foods
In the most severe cases, the disease may cause so much vomiting and pain that it won't matter what kind of food you eat. This will generally require you to be fed intravenously. I can't tell you how many times I've had to be hospitalized for a month at a time just so I could be fed intravenously until my symptoms calmed down. I would then be able to slowly introduce food again—first, just liquids, and then, soft foods like scrambled eggs and mashed potatoes. After a few weeks, I would be able to eat low fiber foods, and finally, a full regular diet, assuming all goes well.
The Final Verdict
Crohn's disease affects everyone differently, as do the foods they eat. You should be vigilant of what foods bother you the most and avoid them. There are no set rules for what you should and shouldn't eat.
Myth #3 — You Don't Look Sick, So You Must Be Fine
The Pain of Crohn's Isn't Outwardly Visible
This is something else that bothers me to no end and is also one of the reasons that make this disease so hard to diagnose. On the outside, you may appear perfectly healthy, but on the inside, there is a lot going on. As stated previously, Crohn's disease can affect any part of the digestive system—from the mouth to the anus—but most commonly affects the small intestine. Basically, the body's immune system kicks into overdrive and attacks its own cells in an attempt to eradicate pathogens, causing inflammation and ulceration of the intestine. Eventually, this can lead to scarring that can build up over time, narrowing the intestine and making it very difficult and painful for things to pass through. It can even lead to a complete blockage or obstruction that is extremely dangerous; the passages can become as narrow as 1/10th of an inch. This is when surgery is a must.
The only way to see the damage is to actually look inside the intestine using an endoscope: a small camera at the end of a thin tube that is passed through either the mouth (to view the esophagus, stomach, and small intestine) or through the anus (to view the colon, or large intestine, and the lower parts of the small intestine. An endoscopy can be a very painful procedure, especially when there is significant scarring. Likewise, any food you eat has to force its way past these obstructions or strictures. I can't even begin to tell you how painful this is. If the blockage is complete, it can cause a backup that will make you have to vomit. If this happens, that portion of the intestine needs to be surgically removed.
Doctors Are More Aware of This Now
Crohn's disease can also present with a lot of other symptoms like joint pain and swelling, rashes, to name a few. However, in most cases, it will be abdominal pain, constipation or diarrhea, and fatigue—things you can't really see. Even if you have intense pains, you may not look sick. In fact, I've had a lot of doctors tell me this when I've gone to the emergency room because of unbearable pains. Thankfully, most doctors are aware of this now. My most recent doctors joke about how tiring it must get to be told you don't look sick. Tiring? No. Annoying? You bet!
The Final Verdict
What most people don't realize is that for the patient with Crohn's disease, it is extremely frustrating when family, friends, employers, and even doctors don't understand what they're going through. I've had more then one doctor tell me I should have no problems with childbirth having lived with the pain I do. And it's not just the pain either; it's the total exhaustion that we have to live with when you have Crohn's disease flare. It's not just an upset stomach. It's not just feeling a bit tired.
Most days I wake up more tired than when I went to bed, and on those days, just taking a shower and getting dressed seems so daunting that I just want to lay down and cry in frustration. How do you explain to people that you aren't just being lazy—that even though you may look fine, you really feel like you're dying inside?
What You Should Know About Crohn's Disease
This is mainly from my years of experience living with Crohn's and from talking to those I know with the disease. I hope this gives you some insight on what a person with Crohn's disease may be going through. Maybe you know someone with similar symptoms and may be able to help them receive the correct diagnosis—or just be able to understand what they are experiencing.
If you take anything away from this article, I hope they are these three points:
- There is currently no cure for Crohn's. There is no miracle diet or magic pill.
- Crohn's affects each person differently. It may be worse for some and barely affect others.
- It's not all in our minds. Although it may not be apparent, the pain and fatigue are real—we're not just making excuses.
I would be really interested in hearing what bothers other people with Crohn's disease too. Leave a comment below if you or someone you know is going through the same things!