Today’s topic is about the emotion scars associated with experiencing severe GI symptoms related to irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO). For some, a difficult experience with SIBO or severe IBS may result in post traumatic stress disorder (PTSD).
Image credit: Photo by Abigail Keenan on Unsplash
First, I will briefly share my personal experience with SIBO, followed by a general overview of PTSD and some great tips from two US-based expert GI psychologists.
Let’s start with my back story.
Twenty four years ago, I developed a strangulated intestine while 3 months pregnant that resulted in 6 feet of my small intestine being removed, including my entire ileum and ileo-cecal valve. I endured new onset food intolerance with GI symptoms post surgery, but for the most part, I was able to cope and manage them for about nine years successfully. Then, it was if a flip switched and my GI symptoms became unbearable and difficult to manage. I suffered with severe abdominal pain, had trouble eating as I became full the minute I ate a bite of food, lost weight, and ended each day with a distended abdomen that appeared like a 6 month pregnant belly. Visits to the doctor and gastroenterologist came up empty–I endured 2 CAT scans, a colonoscopy, every blood test known to mankind. All the testing alone, added stress and a level of fear to the situation. The CAT scan testing did show tremendous gas in my intestine. Of course, I found that unsurprising. I was miserable. My symptoms were impacting my beautiful family and my quality of life. My husband’s business trips were shortened as I could not care for my young children alone. Simply bending over to take laundry out of the dryer was painful. So, I, like many of you, became the google Queen. I was able to connect a few of my clinical factors (resected ileo-cecal valve, bloating, gas, abdominal pain, elevated folate level) to one diagnosis, small intestinal bacterial overgrowth.
I was treated successfully for SIBO–and felt like myself again. But, with the return of any signs of bloating or cramping in my belly, I would be sent back emotionally to that difficult time of trying to get a grip of my health. I feared that the SIBO was going to come back with the same vengeance that it did before. These feelings felt like post traumatic stress disorder (PTSD). And I know there are many of you out there that can relate.
The good news is that the more I began to trust my body and find a gastroenterologist that understood SIBO, I no longer experienced the fear of a SIBO relapse. The more I learned about what foods worked for my body and what foods didn’t, (fortunately, my list of foods that don’t agree for me is quite small these days), the more empowered I felt to make choices that would keep my belly pain-free. And please know, your tolerance to foods can improve and change overtime too.
Stress management and self-care: make them part of your treatment strategy.
Understanding the role of stress and your gut symptoms is important. The gut and brain are intimately connected by the gut-brain axis (GBA). The GBA is a bi-directional communication pathway. When you experience emotional stress, your gut may become stressed out too. And of course, your gut symptoms can add to the stress you feel emotionally. It’s easy to feel out of control when your body is in pain.
Diet strategies are often only part of the solution
Many people with severe IBS and SIBO try to control symptoms with diet alone. I can tell you from clinical experience, this rarely works. Attempts to manage symptoms with diet alone may make you feel like you are in the driver’s seat, but truthfully, for most people with SIBO and severe IBS, diet is just part of the treatment plan. From my clinical experience, many individuals that focus on diet alone to manage GI symptoms keep restricting more and more foods until then can no longer meet their nutritional needs. The strict diet strips them of their social life and hunger from not eating enough leads to irritability, fatigue and greater anxiety.
The amount of fear mongering around food in the media is at an all time high which adds another level of uncertainty for the individual struggling with GI distress. Gluten, grains, dairy, lectins, nightshades, nuts and more are touted as inflammatory and the cause of GI problems–yet we have little human studies that support these statements. The truth is nutritional science is the new kid on the block and food patterns vs. eating one type of food is likely much more relevant to overall health. Modern diet culture looks at food as fuel alone. But isn’t eating meant to also provide emotional pleasure too? Sharing a meal is a bonding experience with people you love and yet food has become a moral substance. It’s portrayed as either good or bad. Does eating a cookie make you a bad person? I certainly do not believe that! I hope you agree with me. I will delve more into this topic in my next post where I discuss intuitive eating and the role it plays in diet and GI symptom control.
What is Posttraumatic stress disorder (PTSD)?
PTSD is a psychiatric disorder that develops in some people who have experienced a traumatic, scary, or dangerous event. People with PTSD will experience disturbing thoughts and feelings related to their experience that continue on for a while after the traumatic event has ended.
You can find two great overviews on PTSD here and here.
One of the key features of PTSD include, “re-experiencing symptoms”, which may include: flashbacks–reliving the trauma you felt over and over, bad dreams or frightening thoughts.
If these feeling resonate with your experience, don’t go it alone.
Laurie Keefer, PhD, a GI Health Psychologist at Ichan School of Medicine at Mount Sinai notes, “It is common to continue to have emotional scars after having been treated for severe IBS with SIBO– many patients worry that they might accidentally eat something that triggers the reaction again, which makes it hard to re-introduce food and often leads to unnecessary avoidance. Working together with a GI psychologist to re-train your brain through cognitive-behavior therapy or gut-directed hypnotherapy, in conjunction with a dietitian, can help people transitioning back into wellness and a healthy relationship with food.”
YES, we all should transition back to wellness and have a healthy relationship with food!
Megan Riehl, PhD, a clinical health psychologist expert in the treatment of gastrointestinal and anxiety related disorders at University of Michigan, provides more, “Once people have achieved a certain level of stability in their symptoms, for some, the fear of a return of symptoms is very present. There can be a healthy level of anxiety that motivates people to continue with the things that have helped them feel better (e.g. staying away from trigger foods, improved stress management, regular practice of relaxation skills and exercise, etc); however, if the anxiety is not useful for motivating behavior change or stability, it should be assessed by a mental health provider. GI-specific anxiety can be driven by fear of having symptoms which can lead to avoidant or overly restrictive behaviors with catastrophic thoughts and excessive worry related to the possibility of symptoms. In more severe cases where the symptoms of SIBO or IBS were considered traumatic by the individual, that individual may develop symptoms of post-traumatic stress which can include physical and emotional symptoms of hyper arousal, hypervigilance, nightmares, re-experiencing of the trauma through intrusive and repetitive thoughts and avoidance of situations/things that remind the person of the trauma. Given the vast range of ways in which someone’s emotions can be related to their physical health, it is best to work with a mental health professional to ensure they receive proper treatment.”
I interviewed Dr. Riehl, on a previous post titled, The Role of a GI psychologist for IBS, read more here.
In this previous post, Dr, Riehl provides a nice overview of how a GI psychologist can help stress, anxiety and GI symptoms with use of diaphragmatic breathing techniques to gut directed hypnosis. Diaphragmatic breathing is a technique that can calm the gut and mind. Activating the diaphragm through diaphragmatic breathing allows for a gentle massage of the internal organs (stomach and intestines). “This can aid with abdominal pain, urgency, bloating and constipation,” Dr. Riehl explains.
Take a Mindful Minute
Dr. Riehl shares some tips she uses with patients that have experienced IBS or SIBO, “When patients are faced with memories of their past negative experiences with their SIBO or IBS symptoms, I first like to encourage people to take a “mindful minute”. During this minute, the individual is encouraged to think about what is true for them in that moment. Couple it with slowing their breathing and scanning their body for tension. By relaxing the body and mind they can take back control of worrisome thoughts and/or better manage a physical discomfort. They may even find that by slowing down for a moment, their physical symptom (which can trigger anxiety), will pass.
The Use of Worry Control Questions
Another way to help manage your worrisome thoughts notes Dr. Riehl, “I also like to encourage the use of worry control questions. As you notice that your current thoughts about a past negative experience with your diagnosis is not helpful to your current situation or that your anxiety is increasing, you can ask yourself some of the following questions to aid with decreasing the worry,
“Am I overestimating the likelihood that something bad will happen right now or in the near future?”
“How did I handle things the last time it was bad? What can I do to handle things right now?”
“Am I minimizing my ability to cope with unexpected situations?”
Benefit from our own great advice and care
“Another great technique is to remove yourself from your stressful situation and pretend that a friend or loved one is experiencing it. Ask yourself, ‘What would I tell my best friend if they were in this situation?’ We often give our loved ones our best, most thoughtful advice. We want to be helpful and aid in calming their worries. However, we often hold ourselves to different standards which gets in the way of allowing us to benefit from our own good advice.”, suggests Dr. Riehl.
Here’s an example that Dr. Riehl put together to illustrate how you can benefit from treating yourself like your own best friend or loved one:
You want to go on a vacation with your family but you fear that if you have symptoms you will be a bother and will ruin the trip. So therefore, you decide to have your family travel without you.
What advice would you likely give a loved one?
You would likely tell them: “If you were to have symptoms on your trip, your family would surely understand and be there to support you. You could make adjustment to your itinerary if necessary, but you don’t even know if you would need to because you are feeling well. Either way, who better to travel with than your loved ones who can be flexible and understanding?”
If you experience stress and anxiety about your IBS and SIBO symptoms that feels “bigger than you” or contributes to a level of fear that is minimizing your quality of life, please know you are not alone. But, there are great GI psychologists and GI dietitians that can provide support, tips and tools to help you transition back to overall wellness.
I have a list of GI dietitians here and the Rome Foundation has a list of GI psychologists here.
33 replies on “Dealing with the Emotional Scars of SIBO or IBS. When to Get Help.“
What a wonderful post, Kate. I have dealt with these issues too and I am similarly learning to manage them–and not just with diet!
Thank you for writing about this and helping others understand the different obstacles one may face as they heal.
Thanks for chiming in, Casey. I think it is an important topic. So many people are trying to navigate their emotional well being and gut symptoms and they are often linked.
Kate, I absolutely love this post. I can relate to almost everything you said, as a fellow GI sufferer. I really love the worry control questions that you listed. Thanks for sharing and putting all of this great information in one place!
I like the worry control questions too that Dr. Riehl put together for all of us. There are so many ways to approach the treatment of gut symptoms–and I firmly believe it often takes a multi-disciplinary approach with a GI, GI dietitian and GI psychologist. It’s not easy when your gut doesn’t cooperate.
Kate, thank you SO MUCH for this post! I read it before getting out of bed and it truly gave me strength to face the day. I’ve been dealing with GI issues for 38 yrs due to being in the hospital on massive doses of penicillin for 2 weeks. We didn’t know then how destructive antibiotics can be. Anyway, I had a surgery this last year which resulted in complications and severe stress which again really manifested itself in GI issues. My neurologist said that I was going thru a type of PTSD and I have begun treatment for it. Your article was so relevant for me because each time you feel a pain in that area, it puts your brain on high alert and you start to become anxious again. Knowing that it’s not just “me” helps so very much. Thank you for all the work and information you give to us!
Thanks for sharing your experience, Deborah. I appreciate it–and I know that many of the other readers do too. Many people lurk silently on my blog–and that is perfectly acceptable!…but they are reading and absorbing the comments. It’s so vital that people do not feel alone in this complicated scenario of dealing with GI pain. So glad you are taking control and getting the help to move forward.
Great information Kate. I passed this along to my 17 year old daughter who has PTSD from an incident consuming gluten and winding up in the Emergency Room. Although she does not have IBS or SIBO, so much of your words ring true with how to deal with the anxiety surrounding the incident and how to move forward.
Thanks for the feedback, Ashley. I wish the best for your daughter!
pam robison, MS RD
It’s so comforting to hear another person’s story about their experience with IBS/SIBO – especially an RD who has experienced it herself and works with the public. My IBS began in my mid teens and took over 50 years to be diagnosed and manage. I can remember test after test and doctor after doctor resulting in a “we don’t know” answer. Along with the pain, bloating etc, I would have my “don’t touch me” and “turn down the tv/music” days because I was hyperstimulated. Having a normal relationship with my husband was difficult. And the depression would be so severe during episodes that all that helped was to lay on the couch and repeat “this will pass, this will pass”. I later learned that was an example of cognitive therapy. For those who don’t feel like their doctor is really helping or don’t have access to an RD who understands IBS, I recommend to find an RN or nurse practioner who does. I still learn more practical information from them than I do from the doctor.
Thanks Pam for sharing your story. Yup–I think that hyper-stimulation is common, actually. Peace and tranquility are needed to decrease the stress response. Not good for your body to be on high alert all day long. xx
Kate I think we can all relate. I am currently away with my family on a ski trip. I always bring Atrantil with me just in case my symptoms flare. Knowing I can take that and feel better within the hour has been a godsend for me. Maybe it can help others. I don’t worry about going out to eat anymore.
Kate, I found this topic so informative, supportive, and empathetic. So sorry for the GI troubles you have experienced. Many thanks for turning them into gifts that benefit so many. I’m so grateful I found you several years ago.
An SIBO fighter due to slow transit and condtipation courtesy of Scleroderma.
Thanks for your very lovely comment, Emmie. You pulled on my heart strings a bit–and I appreciate that. Continue to be a SIBO fighter.
Annie Rosen Heath
I have been wanting to connect with you for a while. It’s amazing what you have done for the IBS / SIBO community and I wanted to share my gratitude and appreciation with you. I am also a Registered Dietitian, with IBS and SIBO, and work in Vancouver, BC. Unfortunately in Canada we haven’t come as far in terms of SIBO testing or treatment. I have read all your SIBO posts and also purchased your SIBO info pack. I would like to share my story with you and ask a few questions too if that’s ok:
I have had IBS-C for 15 years which has gotten progressively worse. When I was diagnosed at 25 years old, I was able to manage my symptoms with diet alone (high fibre, no gluten or dairy, lots of water and exercise). However since the birth of my second child 6 years ago my symptoms have become unmanageable. My bloating is extreme and by the end of the day I look 6 months pregnant. I need to take high doses of Restoralax and 2 mg Resolor nightly to have a BM. With the chronic constipation (and after giving birth twice) I have developed bladder prolapse and a rectocele which has further complicated my constipation.
I was diagnosed with methane-dominant SIBO by a naturopath 4 years ago. I tried Rifaximin, followed by nightly Resolor and the SCD diet but had no improvement. Neither probiotics or Atrantil worked for me either. I have recently started the low FODMAP diet again and find it helps with my bloating but no improvement in constipation. I just did another lactulose breath test for SIBO and came up as increase in hydrogen (21 ppm), methane level 7 ppm, and combined hydrogen and methane 28 ppm. Unfortunately there aren’t any Gastroenterologists that I know of in Vancouver that specialize in SIBO, it’s mostly naturopaths and no disrespect but I don’t want to go down that road again. I saw my Gastroenterologist today we came up with the following plan:
1. Start with Rifaximin, if bloating and constipation improves then I’ll stick with my current nightly motility agent (Resotran 2 mg) and no need to do lactulose breath test again
2. If no improvement with Rifaximin alone will do another round of treatment with both Rifaximin and Neomycin
3. If motility still not improved after the second course of antibiotics will do another breath test and consider trying low dose neotrexate (LDN) instead of Resotran as motility agent
4. If motility only improved for a few months will do another breath test when symptomatic and treat again if required
Please let me know if you have any other ideas/ input regarding the pharmaceutical plan. It was honestly just a huge brainstorming session while we looked up research so nothing set in stone…
He didn’t have much guidance on when to start probiotics or diet plan but he thought it was a good idea to keep with low FODMAP when on Rifaximin. I know there is controversy on whether fermentable carbs should be added during antibiotic treatment. What do you think…??? I picked up Align but not sure whether to start it during the course of antibiotics or afterwards. What do you think?
Thank you so much Kate
Thanks for your comment! Some GI docs in Boston are trying a combo of Flagyl and Rifaximin with methane + SIBO with better success. Of course, this is not based on a study–but rather on clinical observation. These dual antibiotics seem to work a bit better on the archaea that produce most of the methane gas in humans. It is so important to keep that gut moving. Beyond that, I can’t really comment on your personal case in a blog format–as I don’t know your full history -and I am not working w/ you directly. But, perhaps a antibiotic combo approach might be another consideration for you and your GI doctor.
To Annie, as I am SIBO methane dominate something that helps with the constipation is 2-3 200 mg magnesium a day. It was first prescribed for irregular heartbeats & this has been a nice side effect of it as well. Also, have you tried Atrantil? I’ve has success with that as well. Best wishes for healing and dealing with this, it can be such a life changer!
Annie Rosen Heath
Kate thank you so much for your response. I am so happy to meet a fellow RD who is also a SIBO expert! I am happy to pay you for your time if it’s easier for you to answer my questions in a phone call just let me know and we can set something up? I purchased your SIBO package and was hoping to pick your brain a little further… here is my summary to date:
– Suffer from extreme bloating and constipation, as well as abdominal pain and nausea sometimes
– LBT showed: increase in hydrogen (21 ppm), methane level 7 ppm, and combined hydrogen and methane 28 ppm
– On low FODMAP diet currently, take 2 mg Resolor and 34 grams of Restoralax (PEG) to induce BM, no probiotic
– Currently waiting to start Rifaximin, unfortunately in Canada we need special authority from Health Canada for this drug
My questions for you:
1. Is it fruitless to try just Rifaximin for 14 days? Should I jump straight into a dual antibiotic therapy and if so should I add Neomycin or Flagyl as you suggested above (I’m unclear if the side effects of Neomycin are really that much of a concern ie long term or permanent hearing loss/ nerve dammage?) My GI didn’t think they would prescribe Neomycin if it was unsafe
2. Do you still recommend going off low FODMAP Diet during antibiotic therapy?
3. Do you still recommend staying on low FODMAP diet for 4-8 weeks post-antibiotic therapy. At the 8 weeks mark do you suggest challenging each type of FODMAP?
4. Do you recommend probiotics while taking antibiotics or afterwards and if so which one?
Thank you Kate! Please let me know if you prefer to answer these questions in a paid consultation:)
Thanks for this post. It helps to know it’s not just me that feels like this. It’s getting harder and harder to deal with SIBO. It’s been about 8 years (I suspect longer) and in the past year I’ve come to realize how traumatized I am by this condition. I can pinpoint each stage of this getting worse. Each time it followed a stressful life event. Last 10 years have been continuous high stress. I know this is the biggest contributing factor.
Cooking and sharing food has always been one of my biggest passions and not only has that been taken away from me but so has so many other things. It is affecting every thing in my life, every day. I’m stressed and miserable with this 24/7 and I haven’t felt like myself in so long.
Your article resonates 100% with me. I’ve given up on getting help. All they want to do is stuff me with antibiotics and hand me a list of FODMAPS. If only I could still eat that much variety!
I hope to find a local GI therapist someday. Thanks again, Kate.
I hope you continue your search to find a GI psychologist to talk through some of your experiences and perhaps try other therapies such as gut directed hypnosis–there are many well researched therapies to consider beyond antibiotics and low FODMAP. IBS is a complex disorder–and therefore different therapies work for different people.
Thanks Kate, I didn’t even consider the hypnosis! I will look into that. It would be great to find a GI dietician that also employs other methods such as that.
I also wanted to thank you for your article on Pelvic Floor Therapy. I found an amazing PT in Framingham and just finished months of PF therapy with her. She is so good at what she does and despite what I wrote in my post, she helped me greatly. I will be moving on to more therapy with her manager. I have given up on DR’s but not on myself, so I am thinking outside the box.
carolyn S Barnett
I enjoyed this post so much. I also have had GI issues for 7 years due to an overload of antibiotics after several surgeries in 15 months. The U of M hospital put me on a Low Fodmap diet and this seems to help but I still have severe gas problems which causes me a lot of stress. It does help to know there are so many people that have these issues but it doesn’t help the cause of how to deal with it out in public. People don’t understand when you say I have gas they always say ” I do too” but they don’t have it like i do. Thanks for the articles, keep them coming
Thanks for your comment Carolyn. I do think some providers simple don’t understand what ‘a lot of gas or severe bloating’ feels like–and to their defense, they just haven’t had it –so don’t know. I certainly had NO idea when I was a newbie dietitian with zero GI symptoms in the early stages of my career. It’s frustrating to get the response ‘everyone has gas’ when it creates pain and cramping. I hear you.
Thanks for your post. Maybe I’m doing the search wrong, but your website link shows zero contacts for anyone in WA or OR states. Suggestions?
The list of FODMAP knowledgeable RDs is growing–we don’t have any RDs listed from those states for a couple reasons–one they have either contacted my team and did not fit our criteria–we try to screen dietitians to ensure they are using the diet regularly and have had some formal education on the diet for the patients protection OR they exist (and I am sure they do) but they have not contacted me yet to be added and screened by our team.
Thanks so much for your reply and all the work you do. I actually have a great RD who is very good on FODMAP’s, SIBO, IBS, type 1 diabetes, gastroparesis, and assisting me in trying to figure out something that may work for me and work to balance all those factors. That said, I think self-hypnosis and some mental support might be the most important thing missing in my current “tool kit” and my health care team agrees and is supportive. The challenge is finding someone local. There is someone who is a 90-120 minute drive away. I can’t get an appointment with her for months, and then would need to get up there for 7 sessions every other week which would be challenging. A few questions you may be able to help with: What questions should I ask a potential provider to establish if they’re credible in the area of IBS-focused self-hypnosis? Any other suggestions in choosing a provider? Any thoughts on the choice between choosing someone local who seems credible (experience, education, certifications) but has limited IBS-focused experience, versus someone with more specific IBS-related experience but much more remote and logistically difficult to access? Is the standardized 7-session protocol for IBS-related self-hypnosis something that any competent hypnosis professional should be able to help me with, or in your opinion, is specific experience with IBS-related counseling important? Thanks!!
Hi there. I have sent you questions off to a GI psychologist with greater expertise than me in this area –with the hopes to get a well constructed answer for you. Stay tuned Philip!
Here is a response from one of the top GI psychologists that has developed & studied gut directed hypnosis protocols: Generally speaking, it is certainly best to work with therapists experienced in treating IBS when receiving psychological treatment for the disorder. However, such GI-specialized therapists are not available nearly everywhere. The good news is that with the North Carolina Protocol, therapists do not need to have a lot of specialized knowledge about IBS, for the treatment is fully scripted (in a way, the IBS expertise is written into the protocol). So as long the therapist is adequately trained and experienced in clinical hypnosis, and is a state-licensed health professional (either a mental health professional or a medical professional), it should generally work fine. If, on the other hand, the person administering the hypnosis treatment is not using the scripted protocol, he or she needs to be quite knowledgeable about IBS in order to have a good probability of actually improving the IBS symptoms.
I, too, have had IBS for 40 years and only got to know about the Low Fodmap diet a couple of years ago. I do not have SIBO but many times have avoided traveling and going out because of my IBS-D. The diet has helped so much that I was able to take a big trip with my husband recently and did very well! However, I am on my guard always and know where every bathroom is in every place of business near me! Question: what do you think of enzymes for those of us with IBS? Would they be helpful to alleviate symptoms, or is it just a case of “try them and see?” Thank you so much for your help!
I see digestive enzymes encouraged by many online sites–but to be honest, I have seen little benefit in the majority of the IBS clients that I have tried them with. I am referring to the full spectrum digestive enzymes that are marketed as such. Certainly–in some individuals inflammation in the small intestine–can contribute to a decline in some digestive enzymes–so theoretically it makes sense if that is the case to try them. However, individuals with IBS do not often have small bowel inflammation–but some do. A potential issue, for some people, is a condition called pancreatic exocrine insufficiency–which can contribute to SIBO risk and result in digestive symptoms. This is when the pancreas does not make enough enzymes to help the body digest food. Doctors will generally test stool elastase to assess for this condition. Stool elastase is evaluated by one stool sample.
Other single type of digestive enzymes such as lactase tablets for lactose malabsorption and intolerance–can be helpful –and allow some consumption of lactose containing foods. And Alpha Galactosidase–which is found in Bean Assist that helps enhance tolerance to foods rich in GOS, such as legumes, pistachios, cashews. Bean Assist is the alpha galactosidase product I recommend b/c some other products contain the FODMAP –mannitol. https://enzymedica.com/products/beanassist-gas-bloating
Kate; Thanks so much for the information! That’s very helpful!
Thank you for this post. I was diagnosed with IBS-D several years ago. It’s been incredibly stressful. Well, we all have our stories. I asked my new GP, rather her office, if she tested for SIBO or if she could refer me to another doctor who did. After about two weeks I got a reply that, “we do not offer SIBO testing nor does the hospital. You would need to purchase a test to perform at home”.
Would you happen to have any advice about getting tested?
A homekit for SIBO is an option. Check out http://www.commdx.com
Thank you so much!
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