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My Self-Care Tips for Managing Ulcerative Colitis Pain


My Self-Care Tips for Managing Ulcerative Colitis Pain

Pain associated with ulcerative colitis can range from mild to debilitating. One woman shares her tried-and-true tips for finding relief from stomach cramps and other forms of pain.

Over Thanksgiving in 2010, Jen Longley thought holiday stress was getting the best of her. A publicist from Ithaca, New York, she was plagued by urgent, bloody bowel movements, along with nausea, vomiting, pain, and weight loss.

The holidays passed, but Longley’s symptoms lingered into spring. She had her appendix removed in April 2011, but the problems didn't end there. “At my follow-up exam, my doctor hugged me because I looked so sick,” Longley, 36, recalls. “On May 6, after two days of the most intense pain and sickness of my life – I would literally crawl into the bathroom and lie there because I could not move – I called and asked to be admitted to the hospital.” Three days after that, she was diagnosed with the inflammatory bowel disease ulcerative colitis.

“Before things started getting better, I lost a total of about 60 pounds, and was in and out of the hospital for about a year,” Longley says.

Ulcerative Colitis Pain: A New Normal

For Longley, pain has been a constant since her ulcerative colitis developed. She experiences pain to some degree every day. “I’m a pretty calm person, and don’t want to freak people out when I say that I’m in intense pain. So I always joke and say, ‘It’s like I’m giving birth to the alien baby,’ in reference to that famous scene in [the horror movie] Alien,” she says.

The pain can vary from a dull ache, akin to stomach cramps, to sensations more like “someone is stabbing my abdomen with a knife; and the pain will just radiate throughout my body. At its worst, it will take my breath away,” she says.

“I’m so blessed to have a workplace that understands that there are days when I simply cannot be in the office without being curled up in the fetal position in tears,” Longley says. “And I’ve definitely had to cancel plans because I just couldn’t tolerate the pain."

Different Forms of Ulcerative Colitis Pain

“Abdominal pain is a common complaint in ulcerative colitis, and can be the source of much distress and anxiety,” says Hardeep M. Singh, MD, a gastroenterologist at St. Joseph Hospital in Orange, California. “Typically, it’s related to inflammation in the colon, which leads to diarrhea, bleeding, and abdominal pain. Sometimes colon inflammation can lead to a spasm, which also causes pain.”

For anyone with ulcerative colitis who experiences stomach pain, Dr. Singh says the most important thing is to contact your physician. While the pain doesn’t always mean something dire, “it can represent something serious, such as a bowel obstruction or the beginning of a severe flare,” he explains.

Ulcerative colitis pain isn’t restricted to the abdomen, according to the Crohn’s & Colitis Foundation of America. Other possible symptoms and complications include eye pain, mouth sores, joint swelling and pain, kidney stones, and skin rashes. “Arthritis flares may correlate with flares of colitis,” Singh says. “Often, as the colitis is treated, the arthritis will improve as well.”

Learning to Live With Ulcerative Colitis

Longley was diagnosed with arthritis related to her ulcerative colitis, and she battles kidney stones as well. While she takes medication to manage her symptoms, it doesn’t stop all of her pain.

“Five years into this journey, and I will still sit and cry sometimes out of frustration or out of feeling unwell,” Longley says. “Until my diagnosis, I had always been very healthy and very rarely got sick. So it was a shock and completely life-changing. But I try to be positive and always look on the bright side of things.”

Longley's Successful Self-Care Tips

Longley has found several self-care techniques that help her manage her symptoms and stay positive. These include:

Heat therapy. “I have a heating pad that does help with the pain,” she says. “Sometimes I’ll also take a hot shower or bath to try to relax.”

Deep breathing. “If I’m at work and pain hits, but I don’t have anything with me, I will shut my office door and try deep breathing – almost like Lamaze,” Longley says.

Massage. When Longley’s arthritis worsens, she gets a massage to ease the pain.

Fresh air. Longley notices a huge difference in her outlook when she's able to spend time in the fresh air and sunshine. “I’ll take a chair outside and pop in my headphones and just chill,” she says. “It’s good for the body and soul.”

Lemons and limes. Ulcerative colitis often causes kidney stones, but there are some dietary changes that may help prevent these from forming. Longley says she drinks “a ton of lemon-lime seltzer water.” There is some science behind this approach: According to a December 2014 study in the Korean Journal of Urology, foods high in citric acid, such as lemon or lime juice, may help prevent kidney stone formation.

Naps. “Ulcerative colitis causes extreme, bone-numbing fatigue, so I try to sleep when I can,” Longley says. “All those naps I hated as a kid, I’ve come to love and appreciate.” Such fatigue is especially noticeable during flares.

Stress management. “I try to unplug from life for a few hours a day, especially when things are super-stressful,” Longley says. Finding ways to maintain good mental health is key. According to research published in March 2015 in the journalClinical and Experimental Gastroenterology, at least 40 percent of patients with inflammatory bowel disease experience anxiety, particularly during flares. “Laptop, phone, television – all go off; and I’ll sit with a book or magazine, even if it’s just for an hour,” Longley says. “If I am stressing about something and can feel the pain kicking in, I’ll call family or friends and get them to try and chill me out a bit.” Having a support network can really help, she adds.

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