Tag: Lights Camera Crohn’s

Why this public bathroom triggers me: Tactics for coping with the mental health aspect of IBD

2 Comments

I paid for my groceries and casually pushed my cart full of food through the automatic door when I saw it. The bathroom where I experienced one of my scariest and most painful moments. The bathroom I had to run into after pulling over on my way home from work because I was in such debilitating pain, I couldn’t handle sitting upright in my car to make it the extra five minutes home. The bathroom where I lost all feeling in my arms and legs and where my fingers locked into painful contortions. I couldn’t even hold my phone to call my boyfriend (now husband) to tell him we needed to go to the hospital. The bathroom where I unknowingly happened to call my mom after accidentally hitting “Recent Calls” with my elbow. All she heard on the other line when she answered was me screaming. She didn’t know if I was getting raped, she didn’t know what the hell was going on and she was in a different state. God was watching out for me because she was able to call Bobby and let him know I needed help and I needed help fast.

He rushed to the grocery store and whisked me out of the bathroom and straight to the hospital where I found out I had a bowel obstruction.

I’ve been going to this same grocery store for nearly seven years. It’s been nearly six years since that dramatic experience occurred. But even now, five years into remission, I always go out the other doors because seeing that bathroom is a trigger. A trigger to one of my lowest points in my patient journey with Crohn’s disease. A trigger that caused my IBD to act up right in that moment this past week.

I was forced to go out of the grocery store that way as part of COVID-19 safety procedures to keep all incoming traffic through one set of doors and all outgoing traffic to another.

Coping with psychological triggers

When those of us in the IBD community hear the word “trigger”, food usually comes to mind. We casually say “oh that’s a trigger food for me”, but we often don’t pay much attention to the physical triggers in our lives that can exacerbate our symptoms—such as locations like that grocery store bathroom, relationships with certain friends and family members, the pressure of being enough and doing enough in comparison to our peers, the list goes on.

I interviewed Dr. Tiffany Taft, PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, and a fellow IBD warrior to get some clarity on this subject and to learn more about what steps we can make right now to protect our mental health and prepare for the unknown.

NH: As chronic illness patients–how can we best navigate triggers that instigate a stress response? (Other than avoidance)

Dr. Taft: “While avoidance feels like the safest option when it comes to situations that trigger our stress response, it simply kicks the can down the road in terms of the effects these situations have on our bodies. People living with chronic illness may collect multiple situations that trigger the stress response – doctor’s offices, hospitals, certain tests or treatments, making avoidance very risky if it means not managing the illness and staying healthy.

Try the “Exposure Hierarchy” exercise: Dr. Taft recommends making a list of activities or situations that are stressful, ranking them from the least stressful to the most stressful and picking 10 things. Rate those 10 things from 10 to 100 (100 being the worst). After making the list, she has patients start with number 10 and practice that task several times over the course of a week.

Before that, though, she teaches relaxation strategies such as deep breathing and grounding to help when the anxiety goes up. She says, “With repeated exposures to the feared situations and working through the anxiety, each time we do activity 10 again, it will feel easier and confidence grows. Once the patient is ready, they repeat with 20, 30, etc. until we get to the dreaded 100 which will actually feel less scary because of all the other work we did before.”

**NOTE** If you feel you have symptoms of Post-Traumatic Stress Disorder (PTSD) which include vivid nightmares, flashbacks, and feeling on high alert most of the time, you should seek treatment with a trauma therapist. The good news is research on treatments for PTSD show they are just as effective when delivered via tele-medicine.

NH: Can you explain (in layman’s terms) what goes on when we’re “triggered”?

Dr. Taft: “Triggered is setting off our body’s fight-flight-freeze response, and results in a cascade of physical sensations and emotions. The most common ones are muscle tension, sweating, shallow breathing, and heart racing. Unfortunately, this response can also trigger our guts to start acting up because of the brain-gut connection. It’s a completely normal process but when you have IBD it can trigger symptoms. Your thoughts may be all over the place and littered with “what if’s” and “I can’ts”. Your mind may revisit the worst aspects of past experiences or come up with even more catastrophic possibilities in the future.”

NH: As people with IBD–I know many of us are nervous about flaring and needing to be hospitalized all alone during this pandemic, while being at greater risk for getting COVID. Do you have any advice on how to cope/mentally deal with that worry/concern?

Dr. Taft: “Facing a flare and hospitalization was stressful in the “before times” so facing this during COVID19 is an extra level of stress. While we have video chat, it does not replace the comfort of physical closeness and touch we would get from supports who could be in the hospital with us. The good news is hospitals have figured out COVID quite well and the odds of contracting it while hospitalized for IBD are lower than they were at the start of the pandemic.”

If you’re facing hospitalization, think about your resilience in these circumstances. There were probably times you felt like you couldn’t handle it, or it was never going to end or get better, but here you are today reading these words. You made it through. It may not have been pretty, it was probably incredibly hard. Anxiety has a great ability to negate our memories of how much we’ve navigated in the past.

Feeling anxious? Do this: Write down the ways you coped before, what worked and what maybe didn’t. Evaluate your thoughts about being hospitalized. Are they accurate? Are they helpful? What are some alternatives that could help you feel less anxious? If that doesn’t work, sit with the anxiety, and try some deep breathing to calm your nervous system. The sensations will likely pass and then you can retry evaluating your thinking when you aren’t feeling so keyed up.

NH: What advice do you have for people during these already complicated and challenging times when it comes to managing mental health?

Dr. Taft: “This is truly a unique time in that we are all in this COVID19 boat together. We all came into the pandemic with our own life challenges, and those probably haven’t gone away and even may have been made worse. We’re coping with a lot of information, new rules every other day, grim statistics, and people bickering over who’s right or wrong. I’ve told every patient I see to turn off the news. Get out of the comments on social media when people are arguing the same points over and over.”

Steps you can take in your day-to-day: Dr. Taft advises not to spend more than 15 minutes a day on the news, so you can stay informed but not get into the weeds. Take social media breaks, especially if your feed is full of the same tired arguments. Focus your attention on meaningful activities that align with your values. Those are what will bring you some stress relief. And those are unique to you, so no list on the internet of how to cope with COVID is going to solve everything. Sometimes these lists make us feel worse because we’re not doing most of the recommendations. Be as kind to yourself as you would be to your best friend or a beloved family member. Nobody has it figured out right now even though some people like to say they do.

Healing Holistically: 7 Helpful Tips from a Nutritionist with Crohn’s

Leave a comment

When you’re diagnosed with IBD as a teenager, it’s safe to say, your disease plays a big role in your future. Brittany Duffy is a 24-year-old from Canada who is already a decade into her journey with Crohn’s disease. Her diagnosis inspired her to become a Registered Holistic Nutritionist.

This past March, Brittany had bowel resection surgery that also involved the removal of her appendix. She is currently medication free and choosing to support her body naturally through diet, stress management, and supplements. Surgery

Before we dig into this week’s article—I want to preface this by saying medication is not a failure. While diet and lifestyle alone work for some with IBD, it certainly doesn’t work for most. As someone who has been on medication for 15-plus years, I understand what it’s like to aspire to be med-free, but not be able to successfully make the transition without putting your health at risk. Please don’t go off your medication without first consulting with your gastroenterologist and care team. At the same time, even if you are on medication, your body, overall health, and well-being can benefit immensely by living a “clean” lifestyle.

When Brittany was first diagnosed in October 2010, she was put on Humira, which worked well to stop her flares. Unfortunately, the medication caused a host of other issues. She experienced anemia, muscle and joint pain, depression, anxiety, disrupted sleep-wake cycle, dry skin, brittle nails, hair loss, constant constipation, and uncomfortable abdominal pains. Sunny day

“I am so inspired by other IBD warriors, it reminds me that I’m not alone and to be grateful for the health I have. So many others have it much worse, so each day that is a good day I embrace and make the most of it,” said Brittany. “We never know when a flare will strike. There are tactics in my toolbox I have now to reduce gut inflammation, and I am passionate about sharing this information with others.”

7 tips for managing IBD holistically

  1. Stress management: It’s critical to manage your stress levels, because when the body is in a constant state of stress, simple functions like digestion, absorption, and elimination cannot occur, resulting as nutrient deficiencies, constipation, diarrhea, low energy, and whole-body inflammation. Stress turns off digestion and can trigger uncomfortable digestive symptoms, like gas and bloating, heart burn, acid reflux, constipation, or diarrhea. When we are stressed it can increase inflammation and reduce the chance of reaching remission. Some stress management practices include deep breathing when feeling overwhelmed, yoga or gentle movement, getting outside and being with nature, and also self-care (one activity a day that makes you calm – music, reading, calling a friend, journaling, physical exercise.)
  1. Choose local, fresh, quality foods: Fresh is best. If it doesn’t come from Mother Nature and you don’t understand the ingredient list, the body won’t either. The body recognizes real foods versus processed and boxed items. There are also beneficial enzymes, fiber, and antioxidants in fresh food that helps reduce inflammation and IBD flares.
  2. Avoid antibiotic and hormone fed meat, dairy, and eggs: Antibiotics and added hormones in our food can disrupt our gut bacteria balance and allow harmful bacteria to thrive, which may contribute to IBD symptoms and poor nutrient absorption. Our good bacteria help digest food and increases nutrient absorption, but if our gut bacteria balance has more harmful than good bacteria, our gut health will become affected.
  3. Practice mindful eating: Eating when rushed or in a hurry can delay digestion and may create symptoms of gas and bloating, diarrhea, or constipation. IBD often creates limited food choices due to food sensitivities or trigger foods, bowel blockages, scar tissue, high fiber foods, raw nuts and seeds or fruits and vegetables. If we create a stress-free eating environment it may help reduce digestive stress and allow our body’s a chance to break down “safe” foods easier, while also reducing the risk of triggering a flare or an inflamed gut. A stress-free eating environment includes sitting down while eating, away from stress and distractions, try to enjoy the food you’re eating, become of aware of how you feel while eating, and find pleasure in food. Take a few breaths and put utensils down in between bites to allow yourself time to eat. Eating should be an enjoyable routine, not something we rush through.
  1. Focus on anti-inflammatory foods that may help reduce IBD flares:

Healthy fats: avocado, hummus, coconut oil, coconut yogurt/milk, raw nut butter

Lean proteins: wild caught fish, chicken, turkey

Digestible fiber: sautéed spinach, carrots, zucchini, bell peppers, soaked or ground nuts and seeds, pineapple, strawberries, bananas, mango

Herbs and spices: cinnamon, cardamom, turmeric, fenugreek

Tea: ginger, peppermint, green, lemon, chamomile

  1. Understand Food combining: Certain foods digest at different rates, which may result as sugar and protein fermentation in the gut. Uncomfortable symptoms like gas, bloating, heart burn, constipation, diarrhea, and feeling tired can result when there is a compromised digestive system and poor food combinations. Try to eat foods that will digest the quickest first, like fruit, to avoid protein and fat fermentation in the gut. Try to avoid proteins and sugary/starchy carbohydrates together. Proteins and fats are okay with vegetables, but should be eaten separately from grains. The purpose of food combining is to improve healthy nutrient absorption and reduce bacterial overgrowths in the gut by reducing a food source, the sugars. Food combining does not have to be practiced several times a day, but it can help long term to reduce digestive stress, and improve overall gut health.
  2. Eat “Alive” foods: Quality probiotics, fermented food (raw and unpasteurized) like sauerkraut, kimchi, tempeh, coconut yogurt/kefir. These contain beneficial bacteria that supports healthy digestion, nutrient absorption, energy, and may help reduce inflammation.

Summer

Now that Brittany is not on medication, she meets annually with her GI specialist to get blood work done once or twice a year. She also has a colonoscopy every three years. Her next scope is scheduled for October. If she recognizes any changes to her health, she contacts her physician or requests blood work. Since Brittany shifted her focus on diet, supplements, and lifestyle, she has improved nutrient absorption and reduced the inflammation in her body.

You can connect with Brittany Duffy, RHN on Instagram and Facebook: @digestionwithbrittany.

 

Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

4 Comments

When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

7E5116AD-B985-4874-93C0-812987927578

Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”

“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

IMG-5353

I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.