Ulcerative colitis (UC) affects about 700,000 people in the United States. In a single year, about 20 percent have moderate disease activity and 1 to 2 percent have severe disease activity.
It’s an unpredictable disease, with symptoms that tend to come and go, and possibly progress over time. Some patients go for years without symptoms, while others experience frequent flare-ups. Symptoms vary depending on the extent of the inflammation. Because of this, it’s important for those with UC to keep track of how it affects them on an ongoing basis.
Here are the stories of four people with UC.
When were you diagnosed?
Five years ago [around 2010].
How do you manage your symptoms?
My first treatment was with suppositories, which I found extremely uncomfortable, hard to put in, and hard to hold. For the next year and a half or so I was treated with rounds of prednisone and mesalamine (Asacol). This was awful. I had terrible ups and downs with prednisone, and every time I started to feel better I would feel sick again. I finally switched doctors to Dr. Picha Moolsintong in St. Louis, who actually listened to me and treated my case and not just my disease. I am still on azathioprine and escitalopram (Lexapro), which have been working very well.
What other treatments have worked for you?
I also tried a series of homeopathic treatments, including a gluten-free, starch-free diet. None of that really worked for me except meditation and yoga. UC can be stress-related, diet-related, or both, and my case is very stress-related. Nonetheless, maintaining a healthy diet is also very important. If I eat processed food, pasta, beef, or pork, I pay for it.
It’s very important with any autoimmune disease to exercise regularly, but I would argue even more so for digestive diseases. If I don’t keep my metabolism high and heart rate up, I find it hard to muster up the energy to do anything.
What advice would you give to other people with UC?
Try not to be embarrassed or stressed by your symptoms. When I first got sick, I tried to hide all of my symptoms from my friends and family, which just caused more confusion, anxiety, and pain. Also, don’t lose hope. There are so many treatments. Finding your individual balance of treatment options is key, and patience and good doctors will get you there.
How long ago were you diagnosed?
I was originally [diagnosed] with UC at 18. Then I was diagnosed with Crohn’s disease about five years ago.
How difficult has it been to live with UC?
The major impact has been social. When I was younger I was extremely ashamed of the disease. I’m very social but at that time, and even to this day, I would avoid large crowds or social situations because of my UC. Now that I’m older and have undergone surgery, I still have to be careful about crowded spots, and I choose to not do group things at times simply because of the side effects of the surgery. Also, back when I had UC, the prednisone dosage would affect me physically and mentally.
Any food, medication, or lifestyle recommendations?
Stay active! It was the only thing that would halfway control my flare-ups. Beyond that, choice of diet is the next most important thing to me. Stay away from fried foods and excessive cheese. Now I try to stay close to a Paleo diet, which seems to help me out. Especially for younger patients, I’d say don’t be ashamed, you can still lead an active life. I’ve run triathlons, and now I’m an active CrossFitter. It’s not the end of the world.
What treatments have you had?
I was on prednisone for years before having ileoanal anastomosis surgery, or J-pouch. Now I’m on certolizumab pegol (Cimzia), which keeps my Crohn’s in check.
How long ago were you diagnosed?
I was diagnosed with UC in 1998, immediately after the birth of my twins, my third and fourth children. I went from an extremely active lifestyle to being practically unable to leave my house.
What medications have you taken?
My GI doctor immediately put me on medications, which were ineffective, so he eventually prescribed prednisone, which only masked the symptoms. The next doctor got me off the prednisone but put me on 6-MP (mercaptopurine). The side effects were horrible, especially the effect on my white blood cell count. He also gave me a terrible and downhill prognosis for the rest of my life. I was very depressed and worried that I would not be able to raise my four children.
What helped you?
I did a lot of research, and with help I changed my diet and eventually was able to wean myself off of all the meds. I am now gluten-free and eat a primarily plant-based diet, although I do eat some organic poultry and wild fish. I have been symptom- and drug-free for several years. In addition to the dietary changes, getting adequate rest and exercise are very important, as well as trying to keep stress under control. I went back to school to learn nutrition so I could help others.
When were you diagnosed?
I was diagnosed about 18 years ago, and at times it has been very challenging. The difficulty comes when the colitis is active and interferes with daily living. Even the simplest tasks become a production. Making sure there is a bathroom available is always at the forefront of my mind.
How do you deal with your UC?
I am on a maintenance dose of medication, but I am not immune to occasional flare-ups. I have simply learned to “deal.” I follow a very strict food plan, which has helped me tremendously. However, I do eat things that many people with UC say they cannot eat, such as nuts and olives. I try to eliminate stress as much as possible and get enough sleep each day, which is impossible sometimes in our crazy 21st-century world!
Do you have advice for other people with UC?
My biggest piece of advice is this: Count your blessings! No matter how bleak things look or feel at times, I can always find something for which to be grateful. This keeps both my mind and body healthy.