It occurs to me that although I talk about Crohn’s disease and my experiences with it, I haven’t ever said exactly what Crohn’s is. Well, since it is Crohn’s and Colitis Awareness Week I can’t imagine a better time to explain. By the way, most of the information that follows, as well as much more, can be found at the website of the Crohn’s and Colitis Foundation of America (www.ccfa.org). One of the foremost organizations dedicated to Crohn’s and Colitis research and the search for a cure.
The disease was first described in 1932 by Dr. Burrill B. Crohn and his colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, who were early pioneers of Crohn’s disease and a group of conditions known as Inflammatory Bowel Diseases (IBD) of which Crohn’s belongs too. Compared to the 7 billion people in the world, Crohn’s is rare. Currently there are believed to be about 5 million people with Crohn’s world wide about 1.6 million of them in the USA alone.
In simple terms, Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract caused by a malfunctioning autoimmune system. Basically, my body is acting as if the normal bacteria which is in everyone’s gut is foreign or invading. Thus, inflammation, low grade fever, and sometimes sweating occurs – along with pain (the sweet, sweet, pain…). The diarrhea, which by the way is not only frequent but violent, is the body trying to flush the “invaders” out of the system. In my case, vomiting is often the result of a flare-up. I think that this is because my Crohn’s tends to attack above the large intestine and is thus closer to the stomach and my mouth than to the “back door.”
By the way, when reading about IBD’s, it is important to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two illnesses are quite similar, but the areas affected in the gastrointestinal tract (GI tract) are different. For example, Ulcerative colitis is limited to the colon, also called the large intestine, but Crohn’s can affect any part of the GI tract, from the mouth to the anus and (rarely, thankfully) other areas as well including the heart. Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon. This is true in my case and one doctor described my initial x-rays as “classical and textbook” Crohn’s.
Also, it is important to understand the IBD’s, like Crohn’s, are not the same as Irritable Bowel Syndrome (IBS). Two different things and I may go into further detail in a future blog.
While symptoms vary from patient to patient and some may be more common than others, the tell-tale symptoms of Crohn’s disease include, but are not limited too:
- Persistent Diarrhea
- Rectal bleeding
- Urgent need to move bowels
- Abdominal cramps and pain
- Sensation of incomplete evacuation
- Constipation (can lead to bowel obstruction)
I personally suffer from all of the above as well as an overall lack of energy/malaise especially during a flare-up. There have been times when I have been so tired from a mild flare-up (which mine usually are) that I’ll fall asleep early in the evening – 7:00 PM or so – and not wake up until 12 or 13 hours later! When I was first diagnosed I was suffering – yes, suffering – from rapid and unexplained weight loss and loss of appetite. This along with the intense pain are very common first signs of the disease. So please understand that when I, or anyone else you know with Crohn’s, says they are tired – they really are. Likewise, if you notice I’m suddenly listless and not moving or just staring into empty air, there’s a good chance that I’m suppressing some serious pain at that moment. When it’s really bad you’ll see me grimace. I’ve gotten so I don’t usually bend over anymore regardless of how bad the pain is.
The chronic inflammation may also cause a fistula to develop. This is what my doctor has discovered has happened to me. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. This is a serious condition that requires immediate medical attention – which is why I’m not on a waiting list for the colonoscopy but got moved to the front of the line. Because of the chronic nature of the inflammation I also have a permanent “narrowing” or “thickening” of my small intestine near the ileum (the most common location for Crohn’s to occur where the small and large intestines join) and scar tissue. There is a good possibility that even if medication can heal the fistula that my symptoms may actually get worse and surgery becomes my only option for relief.
The causes of Crohn’s Disease are not well understood even today. It is known that diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.
Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s.
The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.
The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates. Personally, I suspect pollution of the environment and wouldn’t be surprised if they find that chemicals added to our food play a role.
I hope that this helps everyone to better understand Crohn’s in particular. As I think I’ve mentioned before, I’m one of the lucky people with Crohn’s. My flare-ups are mild and usually short in duration – though I do have some mild discomfort almost all the time – days, not weeks and months. People like Peter K. Vaughan, who I profiled in my last blog entry, have suffered much worse. Though Crohn’s in and of itself is not considered fatal, in the worst cases complications of the disease and/or treatment are.