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When you live with a condition that causes severe symptoms like diarrhea, bloody stools, and belly pain, there are many day-to-day issues to manage. Treatment is an important part of living with ulcerative colitis (UC), but it’s not the only thing that should be on your mind.
Here are a few other aspects of UC that you need to consider when planning for your future.
If you’re employed full-time with good benefits (or your partner is), health insurance might not be at the top of your worry list. But if you don’t have employer-based health insurance, you’ll need to explore your options.
That may mean purchasing a plan through the marketplace. Under the Affordable Care Act (ACA), health insurance companies can’t deny you benefits or charge you more because of a preexisting condition like UC.
The plan you buy might not cover everything. You may still have to pay out of pocket for insurance premiums and drug copays. Talk to a representative at the insurance company before you enroll and ask how much of your medical and drug costs you’ll have to cover.
Also, check the plan’s formulary to make sure the medications you need to manage your UC and any other conditions you have are covered. A 2017 study found that most health insurance policies don’t follow the American Gastroenterological Association’s guidelines when approving biologic drugs, which many people with IBD need.
Women who want to start a family may worry their UC will prevent them from having children. In general, women with IBD are just as likely to get pregnant and deliver a healthy baby as are women without this condition.
Yet it may be harder to get pregnant if you’re in the middle of a flare. Your doctor might recommend that you go into remission and remain there for a few months before trying to conceive.
If you’re taking methotrexate, you’ll need to stop taking it 3 to 6 months before conceiving because it can cause birth defects. Most other UC drugs are safe to take during pregnancy.
Men who take sulfasalazine (Azulfidine) will need to switch to another treatment before trying to get their partner pregnant. This drug can change the sperm and make it harder to conceive.
Treating UC requires a team effort. Your primary care doctor will be the point person for general health issues. But you may need to see specialists for different aspects of your care:
- Gastroenterologist. This doctor treats UC and other diseases of the digestive tract.
- Colon and rectal surgeon. You’ll see this specialist if you need surgery to remove your colon and rectum (proctocolectomy).
- Radiologist. This specialist reads the results of your X-ray, CT scan, MRI, and other imaging tests used to diagnose and monitor UC.
You may worry that your UC will keep you anchored at home, but don’t give up on your travel dreams. You can still take a vacation with IBD — you just need to plan well.
Before you go, scope out doctors and hospitals in your destination. You can check the Crohn’s & Colitis Foundation’s database for locations in the United States, or reach out to the U.S. embassy or consulate in your destination country.
Bring enough medication to last your whole trip, with a little extra in case you get stuck at your destination. Also, carry a signed letter from your doctor detailing your need for the medication, and your original prescriptions, to avoid any hassles from customs officials.
Check to see if your health insurance policy will cover you if you get sick abroad. If not, you may want to purchase an international policy for the length of your stay.
Bring a kit filled with toilet paper, wipes, extra underwear, and any other supplies you might need for emergency situations. Before you go out sightseeing, search online or use an app like Flush to look for public restrooms at your destination.
UC is a chronic condition. Its symptoms can come and go over the years. Although there’s no real cure, you can manage your condition with medication, diet, and surgery.
You’ll have the best outlook if you’re an active participant in your care and have a healthcare team you trust. Learn all you can about your condition, and follow your doctors’ treatment recommendations carefully.
See your doctors for regular follow-ups. If your symptoms aren’t well-managed or your treatments cause side effects you can’t tolerate, your medical team can fine-tune your care to help you feel better.
Living with a chronic condition like UC requires a lot of planning. Make sure your health insurance covers the medications and doctors you need. See the right specialists and follow the treatments they recommend for the best possible outlook.