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PTSD: Tell Me What It Means to Me
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Stephanie Torres and Tiffany Taft, PsyD

This article is based on a ThriveRx podcast recording. Our thanks to ThriveRx for sharing it with us.

Stephanie Torres (ST): I am a consumer advocate with ThriveRx. I have been diagnosed with gastroparesis, had a feeding tube, and am currently on home parenteral nutrition (HPN). I understand what it’s like to live with a chronic condition, and to manage daily medical care, complications, hospital visits, and feelings of fear and isolation.

I am talking with Dr. Tiffany Taft about trauma associated with these challenges, how to recognize the signs of post-traumatic stress (PTS), and steps we can take to manage trauma and PTS. Dr. Taft has a doctorate in psychology. She is a leading expert in GI psychology, and has been practicing for more than ten years. She is on the faculty at Northwestern University Medical School where she does research on the emotional and social aspects of chronic digestive conditions.

Dr. Taft, what sparked your interest in this area?
Tiffany Taft (TT): Like you, I have personal experience with chronic digestive illness, having been diagnosed with Crohn’s disease and eosinophilic esophagitis (EoE). I have that unique perspective as a patient and then the expert perspective on the social, emotional, and psychological toll from my work at Northwestern. We started looking at trauma in inflammatory bowel disease (IBD) last year, and realized there had been only one other study done. We wanted to dig in to find the rates of post-traumatic stress disorder (PTSD) in patients with IBD and identify some of the potential risk factors for a patient’s developing PTSD from their medical experience. We work with Dr. Steve Hanauer, who is probably the leading expert in IBD and Crohn’s. He brought the idea to us from observing symptoms of PTSD in his patients in the clinic.

ST: At what point does stress become trauma and eventually turn into a diagnosis of PTSD?
TT: Trauma, by our definition in psychiatry and psychology, is the experience of intense fear or perceived threat to your life or someone else’s life. (We will talk later about the trauma caregivers can have from watching their loved ones go through all of this.) The good news is only about one-third of people who experience a traumatic event will go on to develop PTSD.

There is a window between experiencing trauma and when we would say someone has PTSD. Historically that has been about four months, per the manual we use to make these diagnoses. But in the most recent revision of that manual, the time was shortened to one to two months—I think so people won’t go too long living with these symptoms before we offer them help. So there is an acute stress period where most people are able to get ahead of it and don’t go on to develop PTSD.

ST: That’s hopeful. How might someone know they are experiencing acute stress? Are there specific signs to watch for?
TT: We group post-traumatic stress or acute stress symptoms a couple different ways. One is what we call re-experiencing or reliving of the event. This includes repeated nightmares about what happened, or repeated intrusive thoughts you can’t get out of your head, or images to the point where it feels like you’re reliving the experience. It can be normal for this to happen a few days or even a couple of weeks after something that is particularly stressful and traumatic, but if this keeps going, those are red flag warning symptoms.

Other things are physical reactions like heart pounding, almost like having feelings of a panic attack without anything to really explain that; feeling keyed up in general, kind of jumpy, on edge, super watchful and guarded; and starting to avoid things that might trigger you to remember the situation. So if it happened at the hospital, you might stop going to your doctor’s appointments and avoid any activities that might remind you of what happened.

Another symptom is feeling emotionally cut off, numb and distant, not really getting much out of what you would normally enjoy. Those are some of the warning signs. Again, they are normal within a couple of days or weeks, but beyond that window we get concerned.

That first couple of weeks provides the window of opportunity to talk to someone about your experience. It doesn’t have to be a professional; it can be a trusted friend or family member. I can’t emphasize this enough. If you try to just avoid it and not think about it and push it aside, the brain won’t necessarily process it in the way that it should. That’s when we can get into trouble. So, as unpleasant as it is, however much you don’t want to talk about it, if you walk away with one thing today it is talk about it, write about it, blog about it, journal about it. Communicating about trauma helps us process it and put it where it belongs in our memories.

ST: It sounds counterintuitive. When you are dealing with trauma, it seems more common to hide, to isolate yourself, but you’re saying communication is what’s going to get you through it.
TT: It is. We recognize how hard that is, but it’s probably the most important thing you can do.

ST: In your research, are you finding similarities between those with IBD or digestive disease generally, and others, like returning vets, who experience PTSD?
TT: We have looked at IBD, IBS (irritable bowel syndrome), and breast cancer. We chose breast cancer because a lot of PTSD research has been done with that patient group, and we wanted to compare IBD and IBS with another medical group versus war veterans. The IBD patients came in right at 29% (roughly one-third, as has been shown with war vets), IBS at 26%, and breast cancer at 20%, consistent with prior research in breast cancer. The IBD group is significantly higher than breast cancer, so there is something unique going on in digestive illnesses that we are maybe not seeing in cancer patients.

ST: Do you have thoughts on why that might be?
TT: We asked questions about hospitalizations and surgeries. The IBD and breast cancer patients looked similar in terms of rates, but I think the types of surgeries that are done in IBD differ from those done in cancer. A lot of people with IBD end up with emergency surgeries, or a critical surgery like having their colon or parts of the small bowel removed, whereas in breast cancer, it might be more planned out. I’m not saying surgery for breast cancer is not difficult, but I think there is something about having sections of your bowel removed, to the point of sometimes having to go on total parenteral nutrition (TPN), that is different than a breast cancer experience.

ST: How might nutrition support, like TPN, complicate things?
TT: When you get to the point of requiring TPN or nutrition support, you may have already had some surgeries. In the IBD world we see short bowel syndrome, and people who may not tolerate food. So not only is something happening to your body surgically or disease process-wise, but now food is being taken away and you are left to basically sustain yourself via IV or other types of nutrition delivery. Existentially and psychologically, this is a huge blow that will compound your experience. We are resilient as human beings, but it is almost like a one-two punch when getting TPN added on top of everything else that has happened.

ST: I think it’s hard for people to understand the psychological aspect of not having food if they are not living in that world.
Can something that is traumatic for one person, for example a line infection which can be life threatening, also feel traumatic to another? Is it the event, the individual, or maybe a combination of both?
TT: Let’s look at vets coming back from active duty. Two vets may be in the same unit and see the same things, but one gets PTSD and the other does not. That points to more of the whole life experience, with the psychological makeup of the person being important. We know some things make us more prone to developing PTSD, with number one being repeated trauma.
If you had a pretty good experience most of your life or you grew up in a relatively calm environment, with maybe some minor things but nothing you would deem traumatic—no abuse, no crime committed against you—and you go to combat, you are less likely to get PTSD than if you lived in a rough neighborhood, watched people get shot, maybe had an abusive relationship at some point. That person is more likely to not be able to withstand another trauma. That is our number one predictor.
The situation of the line infection definitely is traumatic, but I think what you bring into the situation makes it complicated. And that is not me blaming anybody. It’s just what it is in terms of your life experience, and it can unfortunately make it harder to bounce back from something like that.

ST: Sometimes people can get multiple infections. Maybe the first time wouldn’t be traumatic, but infection number five would be different.
What are the common treatments used for PTSD? Are some proven to be more effective than others?
TT: Yes, absolutely.
I can’t emphasize enough the need to work with an experienced, trauma trained therapist. There are many excellent therapists out there that are trained in what we call evidence-based treatments of PTSD. The two main treatments are cognitive processing therapy and prolonged exposure therapy. Just as what I said earlier about talking about the trauma in our window of opportunity, when you come in for one of those treatments the therapist will ask you to retell the trauma to them either in written exercises or in the office. But prior to doing that, the therapist will teach you how to relax your body, how to use “grounding techniques” to bring you out of a flashback. Here’s an example of grounding: I’m sitting in the office looking at the computer screen, at my phone on the floor—just looking at what’s around me—to think I’m not back in the hospital, I’m present where I am. It’s retelling it in a way that feels safe. It’s a tough treatment but the good news is it works about 70 percent of the time. People don’t like the treatment very much because it’s hard, but when they get going with it their symptoms really do improve considerably. A strong therapeutic relationship with the therapist is important.

ST: So literally facing those fears?
TT: Yes. With PTSD, you really want a therapist who knows what they are doing. Look for these two specific terms—cognitive processing or prolonged exposure therapy. You can ask the therapist if they do either of those treatments before you even see them. There are other therapies out there that I would not advocate using.

In terms of medications, there are only two approved for PTSD. They are in the antidepressant SSRI class. We do not recommend that someone experiencing PTSD take benzodiazepines, which are fast-acting anti-anxiety medications. Those are contraindicated. If you want to take them you can, but a psychiatrist trained in treating PTSD will know which ones are good and which to avoid.

ST: Earlier you mentioned that caregivers and even spouses can also feel the effects of trauma. Parents of children with chronic illness and who are on nutrition support, for example, go through a lot. Would treatment for them be similar to what we’ve discussed?
TT: Yes, it would be very similar. Sometimes more of a subclinical PTSD is more common in caregivers and spouses, but either way the treatment would be the same: retelling, talking about it, getting it out.

ST: There can be negativity associated with seeking help, like we might be “weak” or “not trying hard enough” to deal with things on our own.
TT: Unfortunately, that’s true. The U.S. has a long history of stigma towards mental health and mental illness. People actively avoid going to see a therapist for even depression or anxiety. When you get into PTSD, which is very difficult to live with and scary—sometimes people think they are going crazy or losing their mind—it can be harder. It’s natural to be worried about what might go in your medical record, about what it means for the future, like insurance, or having it out there. People don’t like that. We are also a very stoic society, with a “pull yourself up by your bootstraps” attitude, and that is often detrimental. In my opinion, it is very brave to face PTSD and seek help because I know how hard the treatment is. You are not weak at all if you go in to get the help you need.

ST: I agree it is brave.
Those of us living with nutrition support or caring for someone who does often hear about others’ experiences, whether through support groups or in conversation. There is fear, frustration, and anxiety, and often for very good reasons. People are not being taken seriously, often feel dismissed, are being told “you look fine” or that it’s “all in your head.”

People share that visits to the ER tend to be most traumatic, both for the reasons just mentioned and also a fear of anyone touching their lines or bodies due to risk of infection and past trauma. What are some tips we can use to communicate with our care teams or anyone we need to seek medical help from? How can we help them better understand why we might be in tears, or are scared or upset?

TT: I want to validate this feeling. Even as a health-care provider myself, I avoid the ER like the plague. I get it. You feel helpless to communicate, and terrified they are not going to take you seriously. It’s also hard being a female in the medical system. We are not taken as seriously as men; we are more likely to be dismissed. Thankfully, that is getting more discussion, but it’s still a thing, so we are up against a lot of potential problem areas.

Find your voice if you can, and/or have someone there that can speak for you. I have a friend with Crohn’s and we are each other’s person. I take her to her ER visits or procedures and she takes me to mine. I can talk about things with her that I can’t talk about with my husband.

Also, kind of decide you really don’t care what this ER doc thinks of you, or that you really need help and will be assertive. There is a fine line between assertion and aggression. It’s tough, but say, “No, I don’t agree with that. Can I speak to the attending?” if you’re seeing a fellow or trainee.

Try to advocate best you can. When not feeling well it’s tough. If you are in tears you can say, “I’ve been through a lot of traumatic times with this and it’s bringing up a lot of stuff for me. If my emotions seem out of proportion to you, I hope you can understand they are not out of proportion to me.”

ST: Sometimes as we do our best to get through what has happened, we must also live with what is currently going on and anticipate what may come that is not always in our control. How does treatment work for something that may always be present?
TT: If PTSD is occurring and it’s associated with a particularly bad hospitalization, surgery, or infection, we would address that first to try to get that traumatic memory stored in a way that’s not causing flashbacks and nightmares. It’s not ever going to be completely resolved, but we’ll strive to get to where it’s contained, it’s not causing a lot of impairment, and the person feels empowered to handle it.

Every day I ask the people I see, “How do you cope? How do you tap into your resilience?” We are paying a lot of attention to resilience and to normalizing the ups and downs—the rollercoaster ride that is a chronic illness—and teaching people skills so they can go back up the hill after they’ve gone down it and to maybe make some of those hills a little bit smaller. Focusing on what you can do and what you can control, maybe letting go of what you can’t, is another important step when you have a chronic illness.

ST: As a therapist, are you helping build that resilience? While working with someone, is there anything we can do on our own to continue that?
TT: I came out of a training program that was really strength based. I look for what skills you already had before you came in to see me. You are out in the world functioning, you have been through a lot. Even kids are super resilient.

When we get overwhelmed we often predict the worst, and that if it happens we’re not going to be able to handle it. I’ll ask my patients, “When you thought that, did that really come true?” And they will tell me, “No, I was able to figure it out. It wasn’t pleasant, but I made my way out the other end.” So we leverage the skills that someone already has and then, where there are gaps, try to teach them new ones. The idea is that you can do a lot more than you feel or think you can do when you’re at your lowest point.

ST: That’s a great approach. A lot of us hear how brave we are. It’s easy to dismiss that and say I’m doing what I have to do. A lot of strength can come out of the hardships we go through and if you can build on that, it sounds like a positive way to work through and prepare for things that may come.
TT: Yes, and I think a part of that is having a good support system—and by good I don’t mean big. Even one person that really gets it can be with you in the messy times, in addition to when you are doing well. I mentioned my friend with Crohn’s. We talk about all sorts of things I would never talk about with other people. It doesn’t mean I like her more, it just means we have that connection.

Sometimes, unfortunately, chronic illness changes our social relationships and that person isn’t who you would expect it to be. It’s not your best friend but an acquaintance that gets it. Don’t ignore that person. Take them up on their offers to sit and cry and laugh with you. I’m a big proponent of humor. If you can laugh, please do. That is part of resilience. It keeps you going too when you feel like you can’t.

ST: Many people reach out on social media for support these days. However, this can also come with a downside, like seeing pictures of people who are sick in the hospital, hearing how unwell others are, and not only feeling sad for them, but also thinking, “Wow, this could possibly happen to me.” Do you see any problems with this type of support? Is it helpful because of the connections or can it also be hurtful by leaving us overly exposed to others’ experiences and our constantly retelling our own?
TT: The answer is both. For some, their only support is online, and that’s okay as long as that support circle is what I have described: it’s reciprocal, and you’re not constantly the one taking on someone else’s issues and problems. We are good at turning into caregivers ourselves when connected to people online, thinking I don’t have it as bad as “Joe” over here, so I’m going to set my stuff aside to try and help. Then you feel burned out from helping because Joe doesn’t say, “OK, I’ve talked enough. Let me hear how you are doing.” You really want it to be reciprocal.

Model your online relationships with ones you would want to have in the real world, not taking on too much and limiting your time in terms of social media, message boards, and checking in with yourself. If you are starting to feel particularly tense—say if your shoulders are up to your ears as you are reading various messages online—it might be time to step away from the screen.

Online support is great when using these types of guidelines and limiting it if you feel overwhelmed. For example, if someone on Instagram is posting really graphic pictures, you might need to unfollow them because it’s just too much for you to see and you are getting vicarious trauma from them and priming yourself for that kind of hyperarousal I talked about earlier.

ST: You’re saying really pay attention to yourself and how you are feeling and how your body is reacting. Do you have any tips for finding a good therapist to work with that might be trained with this?
TT: If you feel like you have some symptoms, not full-blown PTSD, the best resource is the Department of Veteran Affairs’ wonderful, comprehensive website.* It’s obviously geared towards combat, but the principles are the same. That is where we take our guidance from in treating PTSD. You can fill out screener questionnaires and it will tell you your score and if you should seek care. If you have a potential diagnosis of PTSD, you will want to look for a trauma therapist.

I also direct people to the searchable Psychology Today therapist directory.** The caveat to that is some people will say they do everything, and that is a warning sign when you are looking for someone for a specific thing. But any good therapist will answer your questions before they schedule with you, so come up with a list of questions—ask about those treatments I mentioned, how many patients with trauma they see or what percentage of their practice is based on trauma—and weed out ones who shouldn’t be working with you.

In terms of GI psychologists, I’m happy to say the ROME Foundation, which is the functional digestive illness foundation, will be putting out a searchable directory of GI psychologists and therapists. If you want someone who focuses more on digestive illness and maybe you have some signs but not full PTSD, a GI psychologist would be qualified to treat that and work with you on the digestive illness and TPN. So there are two answers depending on how severe the symptoms are.

ST: Are there resources available for medical professionals when they come across a patient who needs further help?
TT: I would recommend they also view the VA website,* watch the videos, and ask questions of any patient who seems on edge or is avoidant (maybe not following their treatment plan or canceling appointments), especially if the patient has had a particularly rough hospitalization or complications. I know and appreciate that doctors and nurses might be afraid to open a can of worms in a short appointment when they need to focus on medical topics, but they should get comfortable with it and also get comfortable with saying, “I can see you are really struggling here and I recommend you see this person or that person.”

They should have names of therapists they have a relationship with before they bring it up with a patient, because if they bring it up and then say they are going to find one, the patient might feel a bit overwhelmed. A minute or two spent on this could really make a big difference. I recommend doctors get to know at least one psychologist in the community they can refer patients to.

**Psychology Today therapist directory, www.psychologytoday.com/us/therapists/trauma-and-ptsd

September/October 2018

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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