Advice for Managing Everyday Challenges of Crohn’s
Crohn’s disease can be unpredictable. But you can still thrive while you handle your condition. The key is to take charge of the details. That will really help you deal with flares and symptoms that are out of your control.
A flare, or “flare-up,” means the reappearance of symptoms. Symptoms of Crohn’s vary more widely than many other diseases, but with your doctor and past experience as your guides, you should be able to make a list of things to look for. Some more common symptoms include:
- Use acetaminophen (Tylenol) to manage pain (especially if you notice problems with NSAIDs).
- Use over-the-counter meds (Imodium, Pepto-Bismol) to manage your diarrhea (But always check with your doctor before you start).
- Use a moist towelette/wipe instead of bathroom tissue to lessen irritation after you go to the bathroom.
- If possible, use a hand sprayer in the shower or use a special “perianal” cleaner designed for the delicate skin of your anus.
- Use an all-purpose skin cream (Vitamin A&D ointment, Desitin) at night to lessen itchy skin around the anus.
- Bathe in warm saltwater or use a sitz bath to relieve pain from an anal fissure or fistula.
- Use over-the-counter mouth rinses to help with mouth ulcers or canker sores.
- Rest sore joints or use moist heat. Ask your doc about range-of-motion exercises.
Call your doctor as soon as you notice symptoms of a flare-up. They will likely want to test to see if your flare is from inflammation in the intestines or something else like scar tissue, infection, or problems with medication.
Plus, the quicker you check in, the more likely you’ll be to figure out just what triggered the flare. This could help you and your doctor treat your symptoms before they get out of hand and possibly prevent future flares.
It’s not always clear what causes a Crohn’s flare, but there are some common factors that seem to trigger or worsen symptoms:
Because Crohn’s involves your digestive system, the foods you choose can have a big impact on your well-being. Still, you shouldn’t let fear of eating the wrong thing paralyze you, says Colleen Webb, a registered dietitian nutritionist. She’s also a clinical nutritionist at Weill Cornell Medicine.
Rather than focusing on individual foods, think big picture. “If most of your foods are whole foods — instead of foods from packages with lots of ingredients — then usually you don’t have to worry as much about everything else,” Webb says. “If 75% of the time you’re sticking to a nice anti-inflammatory diet, then that’s one of the best things you can do for yourself.”
Vern Laine, of Surrey, British Columbia, has had Crohn’s disease for more than 30 years. His advice to the newly diagnosed? Track what happens in the toilet after your meals.
“Keep a diary of what you eat throughout the day and record the results — type of bowel movement (watery, thick, blood), level of pain, et cetera,” he says. “From this, you’ll discover what you can tolerate.” Be sure to have a dietitian and nutritionist on board. Then you’ll have expert advice as you develop your diet.
Specific guidelines to keep in mind before you munch include:
Be fiber smart. Roughage doesn’t play nice with Crohn’s. But don’t abandon fiber. “If people are told ‘no fiber,’ then typically they steer clear of all fruits, vegetables, nuts, and seeds. And then what does that leave them with? A highly processed-foods diet, which is not going to get anybody feeling better,” Webb says. Make your fiber belly-friendly by blending, cooking, and peeling fruits and veggies before eating them.
Hydrate. Everyone’s bodies work better when they get enough water. But when you have Crohn’s, your bathroom habits mean you’re typically losing more fluids than the average person. Staying hydrated is a must. “Hydration is absolutely necessary to make sure that everything moves through the way that it should,” Webb says. Her rule of thumb: Take your weight in pounds and divide by two. That’s how many ounces of water Webb advises you should try to have every day.
Be careful when eating out. The best way to head off food-related symptoms is to cook your own food rather than risking it with a restaurant’s fare. But if and when you do dine out:
- Call ahead. Don’t wait until you’re seated at the table to crack open a menu for the first time. Most places post their menus online, or you can call before you go and ask about their dishes.
- Order last. If the thought of being in the spotlight at the table makes you anxious, let everyone else order their food first. “Your family and friends can go back to their conversation and you can just have the waiter’s ear,” Webb says. Going last also means your server is more likely to remember any special requests.
- Play it safe. Laine says menus in restaurants tend to have more on them that you can’t eat than what you can. “Stick to what you know, even if it’s just an appetizer,” he says. Usually even the trendiest restaurants will have basics you can fall back on like a baked potato or sweet potato. But if they don’t, go for the choice that plays nice with a Crohn’s digestive system. “Choose simple bland foods that are roasted, steamed, or baked — not fried — and ask for sauces on the side,” Webb says.
You may not know when symptoms will strike, but you can arm yourself with tools for success in any situation, including when you’re at work or away from home.
Find a facility. If bathroom access when you’re out and about makes you anxious, ask your doctor about registering for a “restroom card” to carry in your wallet.
“It lets you get into any disabled restroom that’s available,” Carol Leslie says. She’s an occupational therapist and certified wellness coach who works specifically with people dealing with gastrointestinal disorders.
Take advantage of technology, too. Smartphone apps like Where to Wee, Flushd, and Bathroom Scout can help you find a bathroom wherever you are.
Bring it up with your boss. Sit down with your supervisor after your diagnosis to talk about how Crohn’s may affect you in the workplace. “If they’re amenable, that’s great, but if they’re not, be sure you know your rights,” Leslie says.
Crohn’s falls under the Americans with Disabilities Act. This means you’re legally protected from penalty if you need to ask for accommodations like frequent trips to the bathroom.
Be travel savvy. Carry along any supplies you might need like extra clothes or wipes when you’ll be away from home for a while. “Road travel is easier than flying because there are places you can stop to use the washroom. But even then, I restrict my food intake,” Laine says. If he does eat or drink, Laine says he sticks with peanut butter and water.
Good Crohn’s management includes treating the disease — with medication and the right foods — and taking care of your overall wellness, including your emotional health. “When you’re panicked or highly anxious, you produce a ton of adrenaline and cortisol, and so the gut gets triggered,” Leslie says.
Pace yourself. It can be tempting to go into overdrive to make up for work or time lost during a flare, but that can set you up for a stress cycle, Leslie says. “As an OT, I talk a lot about energy conservation with people — how to pace activities, simplify your work, and get jobs done with less energy.” Ask for help from loved ones, or find an occupational therapist who can show you how to avoid the “all-or-nothing” mentality.
Do things you love. Love crocheting? Bowling? Coffee with friends? Prioritize them. “Your passions are not something you get to after everything else is attended to,” Leslie says. “They’re part of your management plan.”
Seek out support. The Crohn’s & Colitis Foundation can point you in the direction of a support group in your area where you can connect with others who have Crohn’s. If one-on-one is more your style, partner with someone who will hold you accountable and give you encouragement when you need it. “Pull in a buddy you can check in with, almost like a mentor,” Leslie say. “Tell them what you eat, how much water you’re drinking, what exercising you’re doing so you can get an ‘atta boy’ or ‘atta girl’ from a friend.”
Claim your Crohn’s. It’s inevitable — your condition will likely come up in conversation when you’re not expecting it. Have a script ready when it does, Leslie says. “Train people how to respond to you,” she says. Be matter-of-fact, assertive, and calm. Above all, don’t apologize. “That sends a message that you’re a problem, and you’re definitely not a problem — you’re human.”