Table 2.
Current practices surrounding pain management, stratified by group.
| Theme | Representative quote | ||
|---|---|---|---|
| Patients | Providers | ||
| Reported by providers and patients | Building long-term relationships and trust | “Last week I called the office and said, ‘Hey, I need to talk to [the IBD nurse]. I have questions.’ Two days later, [the nurse] called me. And I hadn’t talked to her in six months, but we have that whole rapport and I think that’s huge because what we’re dealing with, for lack of a better word is, shitty, you know. That’s just what it is and it’s important for me and my team that everybody is all in and… supportive.” [Patient] | “I wish I could take away their pain. But the good thing about my role is having these long-term relationships with patients, so I really do know them, and they trust me. And so, explaining to them why we can’t prescribe them certain medications and talking about other like safe alternatives or things they can do in the meantime and knowing that it’s not long-term. Once we heal their IBD, their pain will go away. So re-circling to that, on focusing on treating their disease… which will subsequently treat their pain.” [Nurse] |
| “I feel like you have to explain to the patient and get the buy-in. Because these are our chronic patients, so it’s not like the ER where you’re like, give them narcotics, they’ll go disappear. So we have this ongoing relationship with our patients. So it’s establishing that track. Because if you give them narcotics once, you’re setting the stage for yourself, I think, in the future to always … this is what you did, why won’t you give it to me again? Setting the premise before.” [Physician] | |||
| Using short-term opioids to get through an acute flare | “When I was in my flare prior to my surgery I was three weeks from graduating college, so, of course, while you’re in that, it’s stressful as it is, so I was put on Percocet and a steroid as well.” [Patient] | “In general, we try to treat the underlying reason rather than give pain medication, although certainly, some pain medication might be required temporarily.” [Physician] | |
| Seeking pain management help outside of IBD clinic | “For me, the [GI Pysch] Behavioral Department was a godsend. The breathing exercises, I think, helped my pain the most. I would say almost every day in my life now. Or, if I’m sitting in the car and I really have to go to the bathroom and I know I have 10 more minutes before I’m going to make it home, that can calm me down. Those exercises are amazing.” [Patient] | “A couple of these patients, we’ve had to refer them to pain management clinic to try to get them some more resources and more help beyond what we’re able to give them. So, it’s just I think realizing that there’s only so much that we can do for some people, and that we need to obviously look for other resources in collaboration with people who might be better suited to help them.” [Nurse] | |
| Exploring nonpharmacologic pain management strategies | “I’ve spent many years addressing my diet and lifestyle and even where I live to try and get on top of this sort of chronic pain. The diet over the years, I’ve taken out gluten and dairy and processed foods just because it didn’t sit well with me, not sort of intentionally, and gotten to a diet where I don’t really have a lot of GI pain anymore, but my diet’s very restricted and I have a very controlled lifestyle. I have a luxury of being able to control a lot of my lifestyle, so that’s been helpful, I guess.” [Patient] | “If a patient comes in with pain from Crohn’s disease in the hospital, just taking them off food will eliminate the pain. So they may need an immediate relief, but when they’re not eating they shouldn’t have pain. If they have pain when they are not eating, there’s an abscess there or a cancer or a blockage there. Okay? So, that’s a pretty simple thing. I’ll take them off food for a little bit, treat the inflammation, whether it’s drain the abscess or start them on steroids to control the inflammation. And then I don’t start them feeding again until they’re in no pain. If they have pain, they got to reduce their diet.” [Physician] | |
| Supporting and using medical marijuana | “I experimented trying marijuana from people because that was all I could really get by since I was just a high school student. It’s just that wasn’t covered for colitis. I don’t think it, at least for me, truly would help with the pain, it was just a distraction from the pain.” [Patient] | “I write plenty of marijuana cards… Not day-to-day, but on a month-to-month basis. So I think that if marijuana treats their underlying GI symptoms, including pain, and I talked to them about my expectations if they’re going to use marijuana, then I’m certainly fine with them using it. I’d much rather them use that than narcotics.” [Physician] | |
| Reported by providers only | Generally avoiding opioid prescribing | “I’m not ignoring their pain, and I’m not trying to get a work around to all this, I simply don’t believe that narcotics are the answer for pretty much anything, and so I don’t prescribe them or do I want others to prescribe narcotics for them. So, I’m very open with my patients about it. And I think if you ask some of my patients with pain I’d be curious to see what they say about me as their provider, but at the same time, I tell people that if there’s danger to these medications. At least my impression of myself it’s not like I say no and ignore their pain. That’s not what I try to do. Again, I’d be curious to hear what my patients say about this, but I’m certainly not quick to brush off their pain with a prescription pad.” [Physician] | |
| Assessing and treating underlying causes of disease | “The first assessment needs to be made in terms of where their pain is, and what’s driving their pain and if their pain is inflammatory bowel disease related, or if it’s related to something else. That’s really where you have to start in terms of pain within our IBD population. Certainly if the pain is obstruction from strictures and Crohn’s disease, or if it’s pain within their lower abdomen because they’ve got ulcerative colitis and it’s inflammation within their colon that’s driving their pain, then that usually will depend upon what we do for that pain. Because if the pain is deriving from inflammation, then treating the inflammation is what we have to do.” [Physician] | ||
| Using a decision pathway and an individualized approach to manage pain | “Usually when a patient presents in clinic with, if I think it’s a flare, there may be some diagnostic workup, rule out infections or other things that we do, but … And then we, in terms of basic things for pain management, most of us start with Tylenol. You can take up to four grams a day. If that doesn’t work, then we are comfortable in prescribing tramadol, Ultram, but usually that’s after the diagnostic workup. Unless they’re in significant pain, because if they’re in really significant pain and they have Crohn’s, you have to figure out what’s really going on. Because their disease shouldn’t be causing that significant pain. And if it is, then they probably need to be in the hospital.” [Physician] | ||
| Accessing new information about pain management in IBD | “Ways I keep up with, up to date, on new information in the world of IBD is on Twitter. There’s a huge Twitter presence of IBD providers across the nation. Um, and so constantly sharing new research articles and new information to guide our practice. So, that, and then, you know, other, using PubMed with other research articles and journals.” [Nurse Practitioner] | ||
| Reported by patients only | Seeking peer to peer support | “I’ve met lovely people in [the support group]. Even though all of our stories are different and we’re all experiencing different things, man, it is so reassuring and such a great piece of mind to know that if I have to go into the hospital for something, I could call one of them and be like, ‘Hey, have any of you guys experienced this? What’s going on?’ So, that group has been very helpful because I know we’re not the only ones here.” [Patient] | |
| Using opioids for non-IBD purposes | “I had said before that the pain medicine didn’t actually help with my IBD cramping pain. I was given them and you know, at the same time, you’re on prednisone, you can’t sleep. So, actually, I would sometimes take them to help me sleep which is a slippery slope… I luckily never got addicted, and I kept it under control and all that, but I’m sure other people have done that and how it can result in addiction and we’re using it in ways that aren’t intended. So, that was my experience with the opioids.” [Patient] | ||
| Taking initiatives to seek out new pain management strategies | “I’ve also found a lot of relief in Epsom salt and Epsom salt baths and literally just laying in warm water and just laying there and it’s very relaxing. It’s been great for me.” [Patient] | ||
| Appreciating “whole-person” care | “The biggest thing for me is when I met my doctor for the first time, she’s like, I know you’re overwhelmed and she gave me a hug. She treated me like a person and I’ve had other physicians where I left there in tears with my mom because they didn’t believe the pain that I had and it was reassuring to me that this person cared, legitimately cared. So, it’s reassuring to me.” [Patient] | ||
Abbreviation: IBD, inflammatory bowel disease.