Lessons from a chronic pain journey

Dee Dee Branchaud is in remission, yet she has suffered chronic abdominal pain for years. While invisible to medical tools, the pain has been so intense that she had to stop working at a job she loved. Her experiences, shared in her keynote speech at last year’s Pain in IBD: From Biological Mechanisms to Clinical Management virtual workshop, underscore the importance of the Crohn’s & Colitis Foundation’s commitment to improving the diagnosis and treatment of chronic abdominal pain. And her story offers some insights and hard-earned lessons that may help others as well.

Dee Dee trained in pharmacy when pain was considered ‘the fifth vital symptom,’ something to be treated only on a short-term basis while taking care of the underlying cause of the pain. She was, like many people, suspicious about patients who seemed to be taking pain medications on an ongoing basis without improving. Ironically, her medical training made it more difficult for her to recognize and take seriously her own chronic pain. As Dee Dee learned, “Pain is easy to stigmatize because it’s invisible.”

Like many IBD patients, her joint pain and other symptoms were misdiagnosed for years; not until 2002 did she receive a diagnosis of Crohn’s disease. Her response to joint pain was, she laughed, “like a martyr who’s not going to admit to anything. I’d just pop an ibuprofen to take the edge off and go for a run.” But her 2014 emergency hemicolectomy changed her life and her attitudes towards pain in ways she never expected. In our conversation after the workshop, Dee Dee reviewed her experiences and the lessons she’s learned along the way. Each person’s experience of and response to pain is unique, but Dee Dee’s lessons may be useful for others to consider when dealing with chronic pain.

Don’t hesitate to educate and advocate for effective pain management with your healthcare providers 

Do your healthcare providers understand how chronic abdominal pain is affecting your life? In retrospect, Dee Dee thinks that it took two years before her gastroenterologist fully understood how much chronic pain was affecting her ability to function in her professional and personal life. Her primary care physician assumed that Dee Dee’s intense pain in the months following the hemicolectomy was a normal part of the post-surgery healing process. And Dee Dee’s own tendency to try to push through pain made it difficult for her to acknowledge how much pain was impacting her life. She came to realize that most healthcare providers lack effective tools and/or training to track chronic pain levels. The number scales often used for acute pain (“rate your pain on a scale of…”) do not measure the many dimensions of chronic pain, including its impact on daily functioning. 

Today, she urges patients to educate healthcare providers about their chronic pain and advocate for better management. For example, Dee Dee (who had routinely stood for many hours a day at her job) started to track how often she needed to sit or lay down during a day, and what tasks had become difficult or impossible. Documenting changes in activities helped her providers understand the impact of chronic pain in her life. This approach also helped her and her providers assess whether treatments seemed to improve those items.

Dee Dee also emphasizes the importance of having a healthcare team who will share information with each other. Her own team includes her gastroenterologist, a pain management specialist, a psychiatrist, and a psychotherapist. But as she notes, they’re still learning how to work well as a team. “It’s a team, but only my gastroenterologist routinely shares information with the other members. We need to get real team management in place for complicated treatments,” said Dee Dee. 

Keep a journal or use another method to track your pain 

Chronic pain can go on for months or years, but there is often tremendous variation in its intensity and impact over time. So, it’s important to keep a journal (hard copy or electronic) where you can track your own pain experience. Use it to record daily pain levels, location(s) of pain, any behaviors or factors (like diet) that seem to worsen or improve the pain, and its impact on your daily activities and mood. A pain journal can be invaluable to helping you track your responses to medications and non-medical treatments. Dee Dee, who hates cold weather, was surprised to discover that ice pack treatments significantly help her pain management.  

The value of a pain journal is that it documents your experience over time. The key is to make it a standard part of your daily schedule (i.e., teeth brushing at night, followed by a quick journal entry). Dee Dee said, “for so long, I just kept hoping it would get better and didn’t want to acknowledge how bad it was.” Hope is important, but a journal can help provide timely and accurate information about your pain experience for you and your healthcare providers. 

Identify triggers and look for workarounds

Many chronic pain studies show that people manage better when they feel they have some control over pain. How we view our pain can affect our ability to deal with it, even if the pain level stays the same. Why is this so? As neuroscientists tell us, we are wired to send internal alarm systems when we feel out of control. If we constantly imagine the worst (catastrophizing) or feel completely out of control about pain, we’re going to flood our system with chemical messengers that only make us feel worse.  So, anything that helps us feel some degree of control will help us to manage better. In Dee Dee’s case, she and her psychotherapist identified her fear of being overwhelmed with pain as an issue for her and came up with strategies to pro-actively address the fear of pain. 

Dr. Eva Szigethy, a psychiatrist who founded the Visceral Inflammation and Pain Center at the University of Pittsburgh, shared information at the Pain in IBD workshop about various behavioral therapies (including cognitive behavioral therapy, mindfulness, and acceptance and commitment therapy) that can reduce catastrophizing and increase our resilience and flexibility. These treatments can enable us to live better even with chronic pain.  

Be open to non-traditional treatment methods

In addition to medications to manage pain, Dee Dee has tried many non-pharmacologic and complementary treatments. She uses transcutaneous electrical nerve stimulators (TENS) and ice pack treatments on a daily basis, exercises as often as she can, and works with a psychotherapist. She tried acupuncture once but found the needles too painful on her hypersensitive skin. She and her psychotherapist are now considering eye-movement desensitization and reprocessing (EMDR), a psychotherapy treatment used to treat post-traumatic stress disorder (PTSD).  Dee Dee’s criteria?  “I’ll consider anything if it’s legal and recommended by my providers.”

Each person responds differently to treatments. During the workshop, a clinician asked Dee Dee whether she had tried trauma-related hypnosis since her chronic pain began after a traumatic abdominal surgery experience. In fact, she did try hypnotherapy a few times, only to find out she wasn’t a good hypnotizable candidate. “Maybe I spent so much time being hypervigilant as a pharmacist that I just don’t know how to relax that deeply,” Dee Dee told me afterwards. But it’s worth noting that hypnosis is being used and studied in many patient populations. Gut-directed hypnosis has been used successfully in IBS patients. Medical trauma-related hypnosis is being used for patients who have suffered trauma from either their medical condition or from treatments.

Incorporate exercise and movement whenever you can

Dee Dee walks whenever weather permits, even when she’s feeling some pain. As research suggests, movement and exercise (assuming you don’t overdo it) improves our ability to function. 

Accept limits and work with them

For Dee Dee, who had succeeded for so long by either ignoring or pushing through joint pain, accepting limits was one of her hardest lessons. But now, she says:

Stay open to what new answers may come along

Dee Dee suffers severe abdominal chronic pain, yet her endoscopic examinations show no intestinal inflammation. “My sed rate (erythrocytes) and CRP (c-reactive protein) levels are off the charts, so something is happening, but what?” Sedimentation (sed) rates and CRP indicate inflammation in the body but do not give specific information about location or cause.  Endoscopy has long been considered the gold standard diagnostic tool for intestinal inflammation but, as Dee Dee’s experience indicates, it has limitations when it comes to intestinal pain.

As the Foundation funds more research for different tests and treatments, it hopes to develop new tools that will objectively identify what is now invisible to medical technology. As Dee Dee says, “it took me a long time to accept that this pain is valid and real. Something’s going on, and now with more researchers working on this, I’m looking forward to new discoveries.”

Read more about the Foundation's Pain in IBD workshop in this blog post.