The signs that mean contacting the doctor who treats your Crohn's disease, or going to an emergency department, are mostly symptoms you can check for yourself, and most do not depend on knowing what started this bad spell. Crohn's alone can make one spell feel unlike the last: your symptoms may vary depending on the location and severity of your inflammation, so a spell unlike your earlier flares can still be the disease, and a familiar one can still be something else.
Telling a flare from something new
When people with Crohn's disease have symptoms, it's called a flare, and in between flares most people have periods of remission, times when symptoms disappear. A flare in that sense does not rule out something else behind this spell, such as an infection. Crohn's symptoms also depend on the part of the digestive tract involved, range from mild to severe, and can come and go, with periods of flare-ups.
A test can look for another cause. Among the tests used to diagnose Crohn's disease in the first place, a stool culture or other tests may be done to check for other possible causes of the symptoms, such as infection, and to look for inflammation. Ask your Crohn's doctor whether a test like that makes sense for this spell.
The disease also reaches beyond the gut, so a sore eye or aching joints during this spell belong in what you tell the doctor, along with the bowel symptoms. The most common symptoms are diarrhea, cramping and pain in your belly, and weight loss. Others include anemia, eye redness or pain, feeling tired, fever, joint pain or soreness, nausea, loss of appetite or vomiting, and skin changes such as red, tender bumps under the skin.
The signs that need your doctor, an emergency department or 911
Any one of these is a reason to contact your provider, which for you means your Crohn's doctor:
- very bad abdominal pain
- diarrhea you cannot control with diet changes and medicines
- weight you have lost, or a child with Crohn's disease who is not gaining weight
- rectal bleeding, drainage or sores
- a fever that lasts for more than 2 or 3 days, or a fever higher than 100.4°F (38°C) without an illness
- nausea and vomiting that last more than a day
- skin sores that do not heal
- joint pain that keeps you from your everyday activities
- side effects from medicines you are taking for your condition
A fever and nausea with vomiting each carry a time limit on that list, and a long spell can pass it: more than 2 or 3 days for a fever, and more than a day for nausea and vomiting. If either has gone on that long, contact your Crohn's doctor about it now rather than saving it for your next visit, and say how many days it has lasted.
The inflammation of Crohn's disease may lead to serious complications, which could require treatment in a hospital, or surgery, and intestinal obstruction, a partial or total blockage of the movement of food, fluid, air or stool through your intestines, is one of them. Contact your Crohn's doctor as well if you cannot pass stool or gas, have a swollen belly that does not go away, keep vomiting, or have unexplained belly pain that does not go away.
Contact your Crohn's doctor right away if you see blood or changes in the color of your stool, or if you feel dizzy or lightheaded. Rectal bleeding comes under this right-away timing, not the list above. If the office is closed, phone it anyway: the clinic's on-call nurse or provider may pick up.
Color can point to where bleeding starts: black or tarry stools may be due to bleeding in the upper part of the digestive tract, such as the esophagus, stomach or first part of the small intestine, while red or fresh blood in the stools most often is a sign of bleeding from the lower tract, the colon, rectum or anus. Iron pills, black licorice, blueberries, blood sausage, activated charcoal and medicines that contain bismuth can also turn stools black. Contact your Crohn's doctor anyway and say which of these you have had, since your provider can test the stool for blood.
Go to an emergency department or call 911 for problems such as throwing up blood, severe pain anywhere on the body, or throwing up that does not stop. Treat vomit that looks like coffee grounds the same way: bright red blood in vomit and vomit that looks like coffee grounds are both symptoms of acute bleeding in the digestive tract, which needs medical help right away. For severe belly pain, or vomiting that will not stop, go to an emergency department or call 911, even though both also appear in the lists for your Crohn's doctor above.
If acute bleeding in the digestive tract is severe, you could go into shock, which is life-threatening. If you have signs of shock, among them confusion, a fast heart rate, pale skin, cold hands and feet, or sweating, call 911 for emergency medical help right away, or have someone with you call. Unconsciousness is a sign of shock too, so anyone who finds you unconscious should call 911.
Does weight loss still count if you are losing weight on purpose?
The disease can take weight off during the same weeks you are losing it on purpose. Crohn's disease symptoms may cause some people to lose their appetite and eat less, and inflammation in the small intestine may cause the body to absorb fewer nutrients. A scale cannot show how much of a loss came from each, so tell your Crohn's doctor about the weight you are losing, the planned part included: loss of appetite and weight loss are among the main symptoms of Crohn's disease, and lost weight is on the list above.
Give the doctor the numbers: how much has come off, over how many weeks, and how much you were aiming for in that time.
Getting the amount of nutrients that is best for you may help prevent complications, such as malnutrition, which is a condition in which you don't get enough of the vitamins, minerals and other nutrients you need to be healthy. People with more severe Crohn's disease may have problems maintaining a healthy weight, and a lack of important nutrients such as vitamin B12 and iron.
Ask the same doctor about a healthy eating plan, and about any foods that seem related to your symptoms. Your doctor may suggest keeping a food diary to help identify foods that seem to make your symptoms worse.
What to have ready when you contact the doctor
Before you get in touch, note down:
- the day the symptoms started, and which of the signs above you have
- your highest temperature reading, and how many days the fever has lasted
- how long the nausea or vomiting has gone on
- the color of your stool, and whether every stool has looked that way
- anything outside your gut, such as a red or painful eye, sore joints or tender bumps under the skin
- any iron pills or bismuth medicines you have taken
If the weight is coming off under a NicoCares plan, mention the Crohn's disease and this spell to your care team as well, because a physician reads your answers, your medical history among them, before deciding whether treatment is clinically appropriate, and a bowel condition you have lived with for years is part of that history (see Gastroparesis diagnosed years ago still matters for a weekly injection). Messages to the care team go through Spruce, which has no set reply time, so a Spruce message never stands in for any sign above: contact your Crohn's doctor, go to an emergency department or call 911 as the sign calls for, and write to the care team afterward.
