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 can be very difficult to diagnose. Twenty years ago, it was almost impossible. That's when I was first diagnosed, and by that time I had been living with the disease for over 6 years. In fact, ask almost anyone who was diagnosed back then, and we all have the same story.
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 just 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. At one point I was even sent to see a child psychiatrist at Sick Children's Hospital because after so many years they still couldn't figure out what was wrong and so it was thought that it may all just be in my head to avoid going to school. Of course that notion was quickly dispelled after one visit but still, I can't tell you how much that affected me and still does to this day! My diagnosis finally came by accident. I was at Women's College Hospital undergoing yet another test for Lupus. They had given me an "upper G.I and follow through", which in layman's terms is where you drink barium that allows the radiologist to see the digestive tract, while they take a series of x-rays every 15 or 20 minutes until the barium has gone through. This is where they first saw the familiar narrowing in my small intestine that lead to them finally putting a name to the pain...Crohn's Disease. Although I had no idea what that was, I was elated none the less to finally know what was wrong with me and that I wasn't crazy.
There is no known cause or cure for Crohn's disease.
What Is Crohn's Disease?
Crohn's disease is thought to be an autoimmune disease in which the body's immune system attacks the gastrointestinal tract anywhere from mouth to anus. By the time they diagnosed me, I needed my first surgery to remove a piece of my small intestine. Twenty years later and I have had over 12 surgeries..8 small bowel resections and the rest for various complications. It feels as though I have spent more time in the hospital then at home and here I am, out of remission once again.
As I said, Crohn's disease is an autoimmune disease and is classified as a type of inflammatory bowel disease. There has been recent evidence of a genetic link to the disease as it tends to run in families however it is understood to have a large environmental component as well. This is evidenced by the higher number of cases in western industrialized nations with the highest number of cases in the world being right here in Canada. There is no known cause or cure, be it pharmaceutical or surgical for the disease and treatment options are restricted to controlling symptoms, maintaining remission and preventing relapse.
Myth #1 - Crohn's Can Be Cured by Eating a Special Diet
This is simply NOT true and as a person living with the disease, I find this offensive. I can't tell you how many books there are out there claiming their diet cures Crohn's disease, that if you stay away from this food or that food you'll never have symptoms again and of course they all claim that everyone who has followed their diet has been cured already. In fact it's gotten to the point where everyday people will tell you, I know someone who had that, he doesn't eat anything with (submit an ingredient here) and now he's cured. Now I'm not saying that they are all liars, or that these authors are writing these books just to make a buck. Perhaps that person who stopped having symptoms went into remission or maybe that person didn't have Crohn's disease to begin with. Maybe he just had irritable bowel syndrome or perhaps it was the power of suggestion and they really have gotten better. Maybe the foods they are avoiding really did aggravate their symptoms and they are just feeling better. I don't know but since Crohn's disease is a chronic illness, they still have it and chances are even those people will have symptoms again sooner or later unless they are one of a lucky few who experience a few bouts of mild symptoms and never have another attack again. Now, I'm not denying that certain foods can make you feel worse or better and we'll look at that next but what I do know is that diet plays no part in causing or curing Crohn's Disease according to the Medical Professionals and most everyone who actually has the disease and have tried all these diets and home remedies in the hope that it would cure them. If it were that simple, we wouldn't need to keep funding research to find a cure for the hundreds of thousands of people around the world who are patiently waiting, hoping and praying for one.
This implication is very harmful for people suffering from this painful disease because it implies that we have the answer and prefer to stay sick, that we're some sort of hypochondriacs or enjoy the sympathy or attention. After all, if all we have to do is change our diet and we'd never have any more pain, why in God's name would we not do it? Why are there still hundreds of thousands of people suffering and why is that number growing so quickly?
For most people, Crohn's disease is a difficult and embarrassing disease to talk about and what makes it even more difficult to deal with is when people say, "Oh, Crohn's disease? Why that's not so bad, don't you just need to watch what you eat?" It's so infuriating..but with all those books and diets flooding the Internet, what else are they supposed to think? Still, if I have to listen to one more person tell me how to cure myself....well, fill in the blank yourself.
Myth #2 - Wheat, Junk Food, Etc., Will Worsen Symptoms
Perhaps. The thing with Crohn's disease is that it affects everyone differently. Some people will have an attack, then go into remission and never have another again while others may never go into remission, will experience every complication known and may even die from them. The majority of people will fall somewhere in the middle, as do I. Why is there such a difference? No one really knows for sure but there is.
Likewise, when it comes to certain foods that can aggravate symptoms, they are different for everyone too so you cannot tell someone what they should or should not eat. Everyone must experiment for themselves and figure out what foods are harmful to them. In fact, when you have Crohn's disease you learn very quickly which foods aggravate your symptoms!
In my case, I have a hard time with certain vegetables, salad, pasta's and perhaps most surprisingly, watermelon. On the other hand, I have no problem eating meat or junk food etc.. This is me, I know what foods cause more pain and I generally stay away from them. However like I said, this is different for everyone so someone else with Crohn's disease may not be able to eat the same foods as me. Someone else may be able to eat all the pasta they want and yet have a hard time eating meat. Of course when we are really ill then no matter what we put in our mouth is going to cause vomiting and pain and at that point, it's either time for surgery if the obstruction is complete or if there is only a partial obstruction, it's time to lay off food all together and give our bowels a rest. 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 taken off food and fed intravenously until my symptoms calmed down and then be slowly introduced to food again. First with liquids, then soft foods like scrambled eggs and mashed potatoes, then low fiber foods and finally a full regular diet assuming all goes well.
The point is Crohn's disease affects everyone differently as does the foods they eat. Each person must learn for themselves what foods bother them the most and then stay away from 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
This is something else that bothers me to no end and is also one of the reasons that makes this disease so hard to diagnose. As stated previously, Crohn's disease can affect any part of the digestive system from mouth to anus but is most commonly found in the small intestine. When the disease is active it affects the inner lining of the intestine. Basically, the bodies immune system kicks into overdrive and begins attacking it's own cells causing inflammation and ulceration of the intestine. Eventually this leads to scarring which builds up, narrowing the inside of the intestine making it very difficult and painful for things to pass through. Eventually this narrowing can form a complete blockage or obstruction that can be extremely dangerous, making surgery a necessity. Because the majority of damage is done to the inside of the intestine, it makes it extremely difficult to detect especially if there is not a lot of intestinal swelling. The only way to see how much damage has been done is to actually look at the inside of the intestine with an endoscope...a small camera at the end of a thin tube that is passed through the mouth and into the intestines or likewise by having a colonoscopy which is basically the same but the camera is sent up through the anus to look at the colon and the distal part of the small intestine.
I can't begin to tell you how painful it can be when there is a lot of scarring in the intestine. This scarring builds up over time, eventually leading to a narrowing or stricturing of the intestine. This stricturing cannot be stopped in most cases of Crohn's disease, and eventually the width of the intestinal passage can become as narrow as one tenth of an inch. Since all food must pass through these strictures, and the area around the strictures is badly inflamed, strictures can be intensely painful. Often, food is unable to pass through such a small gap, and returns back up the intestinal tract to be vomited out. At this point, surgery needs to be performed to remove the part of the bowel that is obstructed.
Now Crohn's disease can present with a lot of other symptoms like joint pain and swelling, rashes etc., which I won't get into. Most of the time it is just abdominal pain, constipation or diarrhea and fatigue. Things you can't really see. The point is that most of the time, even when we are in intense pain, we do not look sick. In fact, I've had a lot of doctors tell me this when I have been in so much pain that I've had to go to the emergency room in order to get some relief. Thank goodness, most doctors are aware of this now. In fact a lot of doctors joke about how tiring it must get to be told you don't look sick. Tiring? No. Annoying? You bet! The problem is that most regular people do not realize this and it can be extremely frustrating when friends or family members and especially employers don't seem to get it. We aren't talking about regular tummy aches and feeling tired. In fact, I've had more then one doctor tell me I should have no problems with child birth 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 the disease is active. Most days I wake up more tired then when I went to bed and on those days just having to take a shower and get 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 feel like you're dying inside. Of course every day is different and some days are better then others and as I previously mentioned, every person will have different symptoms and will experience them to differing degrees which only makes it harder for people to understand.
There is an up side to having Crohn's disease though that is still not understood and that is that most people will look younger then they really are. I have been told this all my life and doctors have said this is typical of most patients though they don't know why.
So there it is. This has been my experience and what bothers me as a person with Crohn's. I can think of a few more but these are the major ones. I would be really interested to hear what bothers other people with Crohn's disease too. For now I'm just thankful that I have a platform to get this off my chest. So next time you run into someone with Crohn's disease please don't tell us what we should or shouldn't be eating and for pete's sake don't tell us about your friends, sister's, cousin who went on some diet and is now cured.
As a side note, I just want to say that I have lived with this disease for over half my life and although it has been extremely difficult at times and I've had a couple of close calls due to complications, I have never, ever thought 'why me?' or felt sorry for myself. My faith has always been strong and I have been extremely blessed to have had many spiritual experiences and actual angel encounters which I'm not sure I would have had if I was not sick. For those who are interested, I will be writing about these experiences in days to come.