Not long after I was diagnosed with Crohn’s disease, my doctor gave me a list of symptoms that I might experience. I’ve since found lists of symptoms in a variety of sources, and they all seem to include the following: abdominal pain, diarrhea (sometimes bloody), weight loss, rectal bleeding, joint pain, rectal fissure, fever, blood in the stool, and failure to grow. I’ve experienced some but not all of these. At the time I thought that the possibility of joint pain because of Crohn’s was ridiculous, but because Crohn’s is to some extent an auto-immune disease, it’s not impossible.
Symptoms that I’ve had the most problems with are diarrhea and abdominal pain. I’ve written elsewhere on AC about these and others, but I’ll sum them up here. I think every Crohn’s patient has problems with diarrhea. It’s one of the most common and most debilitating symptoms; it can go on for days or weeks, sometimes even months for many of us. It can make leaving home difficult to impossible. Some doctors recommend over the counter anti-diarrhea medicines like loperamide (Immodium TM) or prescribe stronger anti-diarrhea drugs. A couple of doctors have told me to just work through it, and let my intestines clear themselves – these doctors were mainly family practice or internal medicine doctors rather than gastroenterologists.
The diarrhea from Crohn’s disease isn’t like what you may get from something you ate, or a stomach virus. It’s from the inflammation of your intestinal tract, and its rejection of everything it contains or may contain. When you have that kind of diarrhea, you can’t leave your home. You can hardly sleep. It’s like torture, and it’s hard for people who haven’t experienced it, or lived with someone who has, to understand. Medication can help, with time, but it just has to be endured. I haven’t found much that helps me to get through it. Blood in diarrhea, or in any stool, is more like something you see than something you endure. Because it can be a marker of something worse, seeing it sends me to a doctor, but it doesn’t usually hurt.
Abdominal pain is another story, another symptom. It is, obviously by its name, painful. The cramping from Crohn’s disease is sometimes followed by, and briefly relieved by, diarrhea, but sometimes it’s just pain and cramping. For me it’s usually in the lower abdomen, and more often than not towards the right side. My pain sometimes lasts hours, and sometimes days. I’ve been prescribed everything from anti-spasmodic drugs like BentylTM to narcotic pain medications like hydrocodone. They help some, but they don’t make it stop. It’s another pain that has to be endured.
I have joint pain. Although it’s very painful when it occurs, I don’t consider it a problematic symptom of Crohn’s disease because I have several other illnesses that could be causing it, and it’s usually fairly easy to relieve. Sometimes it can be relieved by over the counter medications like ibuprofen, while other times it takes a prescription medication. In either case, the medication makes it go away, usually within 24 hours. It often returns within another 24 hours, but it is much easier to deal with than diarrhea or abdominal pain from Crohn’s.
Frequent low-grade fevers are another common symptom for me. Again, I don’t know if they’re from Crohn’s or from one of the other diseases I have, but the fever can usually be treated with ibuprofen or aspirin, and with that treatment, it usually goes away.
Since I got Crohn’s disease as a fully grown adult, failure to grow has never been a problem. For many people, weight loss is a serious problem. It’s tied in with diarrhea, and the fear that many people with Crohn’s develop of eating, because eating so often leads to painful cramping and diarrhea. It feels safer not to eat. I’ve never had weight loss, although I’ve avoided eating from time to time. I don’t think it’s in my genetic make-up to be thin, and the steroids I’m often on cause bloating, and I think they affect my metabolism. I think it’s likely that age has also slowed my metabolism, but the other reason for my failure to lose weight is probably partly due to lack of aerobic exercise. When I’m in pain or have diarrhea, I’m not about to go running, swimming, or even walking. My exercise of choice is yoga.
Rectal fissures and bleeding are symptoms that I’ve only experienced once. It was horrible at the time, mostly because it was painful and I had to wear maxi-pads for the blood. But it healed fairly quickly. In this, I know I was lucky. Rectal fissures can be a major problem for many Crohn’s patients, and they often become infected, which only makes things worse. Ulceration of the fissures or of the fistulas inside the intestinal tract is not on the list of symptoms, but it too can be a serious problem for many Crohn’s patients, and it’s one I’ve not yet had to deal with.
I think every Crohn’s patient would have his or her own list of worst symptoms and manageable symptoms. I’m fairly certain that my big problems are on everyone’s list, but I’m also sure that others would top their list with different symptoms. Like snowflakes, Crohn’s patients are all unique, and all different in their symptoms, and in what they can tolerate.
