Brittany Blais: Crohn’s warrior (E71)

Enjoy this interview with Brittany Blais, an IBD warrior who’s been living with Crohn’s disease for the past 12 years since she was 14. From medications and diets to fitness programs, she is passionate about health and wellness and is here to share her story.

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Dismissed, frustrated and not wanting to go back to my doctors

“Assuming you even had it [Crohn’s disease],” he said. My new gastroenterologist’s words hung in the air. I stared blankly from behind my mask, a deer in the headlights, unsure how to respond.

Just like that, I was dismissed and invalidated. I said my intestines were bleeding for the past three months straight and had only just recently stopped, but my words weren’t even acknowledged. 

I tried to relay 20 years worth of symptoms and colonoscopies in just a few short breaths, but it was all dismissed. 

I was given a smile. “Great news!” My colonoscopies in 2019 and 2021 were clear, I was done. No need for follow-up appointments with the gastroenterology clinic, no more colonoscopies. No discussion about remission and relapse, just the implication that I never had inflammatory bowel disease (IBD) and a questioning look of why I was even there. He shook my hand; I was shown the door and told that my primary care doctor could see me in the future. So I left, making sure the door didn’t hit me on my way out.

I was in disbelief. I was angry, frustrated. His words stung, they implied I was a fraud, that I somehow made up this journey. How could I continue to write or share my podcast? I went home and scoured my medical records for the next six hours. To do what? Prove to myself that I have IBD; prove to you, my readers and followers? Whatever the reason, I was driven to dig into my records. 

And there they were, my colonoscopy and corresponding pathology reports: 

  • 2007 – Transverse colon with scattered ulcers; acute inflammation; mild non-specific chronic colitis.
  • 2008 – No ulceration.
  • 2009 – Transverse colon with mildly increased chronic inflammation; left colon with moderate chronic active colitis with occasional crypt abscesses; rectum with moderate chronic active colitis with focal crypt abscess.
  • 2015 – Ascending colon with mild chronic colitis; descending and sigmoid colon with chronic active colitis with acute cryptitis. Postoperative diagnosis: IBD; active inflammation and skipped areas c/w Crohn’s colitis.
  • 2017 – Sigmoid colon and rectum colonic mucosa with focal acute inflammation.

I reflected on my symptoms over the past two decades. My intestines bled nearly continuously for four years from 2002-2006 in my early 20s when I was too embarrassed to tell anyone about it. I had my first major flare in September 2006 with 40+ bowel movements a day of bloody, uncontrollable diarrhea. I didn’t leave the house for three months because I was afraid I couldn’t make it to the hospital without having diarrhea in my car. My first gastroenterologist worked hard to help me find relief, prescribing me a variety of medications over the years that ranged from Rowasa enamas and mesalamine, to eventually a combination of Imuran and Humira. My symptoms were mostly controlled, but I was still in pain, having lots of mucus with my bowel movements, and restricted in what I could eat. So in 2015, I started venturing into the world of diet and alternative therapies. 

Don’t get me wrong, I’m very grateful to be in remission now (with the exception of this summer when my intestines bled for three months). I’ve worked very hard to try and improve my gut health and microbiome. I’ve tried some wild diets over the years, I’ve been fanatical with my food, I’ve been unapologetic about bringing my own meals into restaurants, I drank raw milk and learned to make sauerkraut, and I slowly found what worked for me. So, to have a new doctor who only spoke to me for about five minutes, only looked at my last two colonoscopies, and heard that I wasn’t on medication, then imply that my experience wasn’t somehow real — “assuming you even had it” — makes me angry, frustrated and sad. For crying out loud, pardon my language, but I was literally bleeding from my ass for three months this summer! That doesn’t even warrant one follow up? Every other gastroenterologist in my past has expressed how important it was to be followed, but not now. I’ve apparently reached the finish line. All done.

Unfortunately, my frustration doesn’t end with my now ex-gastroenterologist. His instructions to follow up with my primary care doctor is equally frustrating because I already know how that game works. I’ll see her, share my symptoms, and it’s up to her whether to refer me back to GI. Even if she does, it will probably be another month or two before I can even get an appointment. By then, I’ll be fine and dismissed again.

When I met with my new primary care doctor here in Florida the week before this gastroenterology appointment, she briefly looked at the blood work that was done the week prior and went over some basic family history. I shared my concern about my still low hemoglobin, but she didn’t want to do anything about it as this was my first time seeing her. (I’m not 100% sure whether she was able to see my records from Texas, even though it’s all in the Veterans Affairs system; also frustrating.) Then she questioned why I had a mammogram done at such a young age (at 40 and again at 41), after I had just explained my family history of breast and ovarian cancer. 

Interestingly enough, my cholesterol also suddenly dropped from 220 in February to 168 in October. She didn’t even bat an eye. I’m sorry to say I can’t share my magic secret with all of you out there who might be trying to reduce your cholesterol, because I have no idea what I did, other than move to the beach.  

The day after I met my new primary care doctor, I met my new nephrologist, which ended up being yet another frustrating appointment during this 10-day span. Once again, my previous medical records from Texas were not readily available and the nephrologist had to search through digital files to find my kidney biopsy from 2021. He looked at the notes, immediately commented to me that it was not a very good sample they got for the biopsy, and then said that it merely suggested IgA nephropathy. Stunned again, I didn’t know how to respond. My entire expression — other than wide eyes — was hidden behind my mask. He then went on for about 15 minutes explaining how the kidneys work. Afterward, while I was still in disbelief and processing what he had said at the beginning of my appointment, he looked at my biopsy notes again and said that there was definitely disease in them, and that it’s probably IgA nephropathy — because if it looks like a duck, walks like a duck, and quacks like a duck, it’s probably a duck. He said they would certainly be following me in the renal clinic. I scoured my records again, the diagnosis printed in black and white on the biopsy pathology report clearly states IgA nephropathy. 

I felt like I had a great team of doctors looking after me and partnering with me in my health at the Audie Murphy VA Hospital in Texas; here, I feel like I’ve been cast aside. I feel defeated. 

I came home from my gastroenterology visit last week ready to never go back to the hospital and seriously debating whether I should cancel all my future appointments. I’m tired of every abnormal blood result being dismissed, and having to start over with new doctors. Then, as if the universe wanted to mock me for my desire to never go back, I woke up at 2:00 a.m. on Monday this week feeling like I had been poisoned. My heart was racing, I was dizzy and the room was spinning. I was disoriented, nauseous, my muscles were twitching and my face felt like it was burning. 

I was genuinely scared; in all my years, I have never felt like that. I shook my husband awake and told him I might need to go to the hospital. He got me water and I drank and drank. I assumed that if I did go to the ER, that I would probably just be told I was dehydrated. I wandered around the house, sprawled out on the floor, then tried to rest in bed. Four hours passed and I didn’t feel better, then I had projectile vomiting. I woke Jeff again and told him I needed to go to the ER, there was no debating it. So, off we went. 

I got checked in right away. They ran some blood work and gave me an IV. When the blood work came back, I was told I had low potassium levels, was given potassium pills and then sent home. A few days later my lab values appeared in my online account and I could review them in detail: 

  • Sodium, low. 
  • Potassium, low. 
  • Glucose, high. 
  • Carbon dioxide, low.
  • Calcium, low. 
  • Red blood cell count, hemoglobin and hematocrit, all low. 
  • Urine protein, blood and ketones, all high. 

My diagnosis from the ER? Dizziness. 

Once again, frustrated. 

I don’t have any deep insights or words of wisdom this time. I’m still processing these recent experiences with my new doctors, and writing helps me do that. For now, I’ll keep the follow-up appointment that the ER made for me with my primary care doctor coming up on the 9th, and I’ll turn back to my old friend, Dr. Google. I also feel like it’s a fair assumption that I’m obviously not getting the nutrients I need, so I’m going to refocus on my diet — starting with my latest find, Huel meal-replacement shakes, which are nutritionally complete and contain 27 vitamins and minerals. My first order should arrive today! I also started adding DripDrop packets to my water, which I first learned about from one of my past podcast interviewees 😀, to make sure I’m getting the electrolytes I need. I’ll also reprioritize my meditation sessions to focus on keeping my stress levels down. It may not be a perfect plan, but it allows me to take action and feel like I’m back in control until I can decide my next steps.

Stress and Crohn’s disease

The last four months have been an adventure. Between major life changes and a health scare in my family, during June and July I was facing an overwhelming amount of stress that led me to sobbing in the shower and brought my Crohn’s disease out of remission for about three months.

In mid-June, my husband and I made the decision to pack up our life in Texas and move to Florida for his work. Even though we were excited for the move that would allow us to live close to open water and be surrounded by palm trees, we knew it was going to be stressful. With our decision made, there was no reason to wait. I already had a trip to Utah planned for the end of June, so we booked our house-hunting trip in Florida for early July.

Then, the countdown clock started. 

We immediately hired a realtor to sell our house in Texas and had our place listed online within a week. We chose a realtor in Florida to help us find our new home and the listings started flooding our inboxes from day one. Every minute outside of our work schedules, we packed, we cleaned, we sold our belongings and we searched for new homes late into the night. We were burning the candle at both ends and I could feel myself getting run down. I forced myself to do more each day, keeping the end goal in sight. “Put your head down and drive on,” was the mantra from my Army days that I kept repeating in my head. And after two weeks, my intestines started to bleed. It was the first time in about five years. 

At the same time, my brother-in-law went in for surgery. There were complications, and for the next month my family and I oscillated between hope and grim thoughts as we all held our breath, waiting for better news each day. Fast-forward to today, he is doing well, but still recovering and has a long road ahead (this is his story to tell, so I will leave it here for now). 

The stress and worry about my brother-in-law, combined with the ups and downs of selling and buying a house, was about all I could take. My intestines continued to bleed more and more, but I never went into a debilitating Crohn’s flare-up. I was still able to leave the house and go through the motions of everyday life. In late July, I decided to take the advice I would have given to any other person in my shoes and I called my gastroenterologist. Technically, I didn’t call, but I logged into the online portal I use to reach my providers at the hospital. Unfortunately in this instance, the Audie L. Murphy Memorial Veterans’ Hospital is a teaching hospital and the gastroenterologist assigned to me was a fellow who only saw patients at the VA hospital one day each week. So, my message sat in waiting for almost the full week.

When the gastroenterologist called me after receiving my message, he ordered some labs and I went in to have my blood drawn. But, because I waited so long to reach out to him, it was less than two weeks until we were scheduled to head out to Florida and there wasn’t enough time to do anything else. When my labs came back, the only thing of note was my low hemoglobin; same as always. He urged me to try and get established with the gastroenterology clinic at the VA hospital in Florida as soon as possible, and then he said something that I don’t think I’ll ever forget. He reminded me that when symptoms of Crohn’s disease arise, it can be like standing on the edge of a cliff — the slightest thing might send you over the edge and into a serious flare-up. 

I’ve been lucky to spend the past five years in remission. Having spoken to so many different people with Crohn’s disease over the years, I know that things can change in the blink of an eye. Even though I do a lot of things (sauna sessions, meditation, exercise, fasting, etc.) to help improve my health, I know that when it comes to inflammatory bowel disease (IBD), our best efforts are sometimes just not enough. It is frustrating to not have control of a situation, and equally frustrating to feel like I always find myself in a strange purgatory where I’m not sick enough to receive treatment or helpful advice from my doctors, but yet there’s visible blood coming from my intestines and I don’t feel good. It’s no wonder why I questioned whether I should call my gastroenterologist before leaving Texas, the bleeding and low hemoglobin lab result didn’t actually require me to do anything other than talk about it. 

The rational side of me still says it was a good idea to reach out to my doctor, after all, things can change fast with IBD. But the part of me that knows I’ve gone through this song and dance before is just tired. Therefore, I find myself turning back to the things I can control — outside of conventional medicine — to be as healthy as possible and get back into remission.

With my blood draw done and no other appointments to attend, we finished packing up our house in Texas, piled into the RV and headed out to Florida in early August. Since we weren’t scheduled to close on the purchase of our new home until the end of August, I didn’t call the VA hospital in Florida because I didn’t want to jinx anything. (I’m not superstitious per se, but I didn’t want to take any chances on our new dream home falling through.) 

My husband and I spent the next three weeks living in the RV with our two dogs. Finally, we were able to close on the new home and moved in with just a few days left in August. Then, with my brother-in-law on the mend and our new house purchased, just as quickly as it had come on, my stress disappeared. Over the next two weeks, my intestines slowly stopped bleeding and the sunshine, open water and palm trees were helping me to feel more energized than I have in years. By mid-September, the bleeding had stopped. 

It’s early October now, and while I still get run down easily, I feel happier and healthier in Florida. There is something that centers me as I stare out across the bay, feel the sunshine on my face and watch palm fronds swaying in the breeze. I was also able to get set up fairly quickly at the VA hospital here in Florida. I had a virtual appointment with my primary care provider a few weeks ago and she was able to put in new referrals for me to see the gastroenterology and renal clinics here. I see my new nephrologist this week and gastroenterologist next week. I’m curious and anxious to see how my new doctors will respond to me and what they will say about my labs. I worry that they will look at me with the same disbelief I’ve seen on so many faces before, and I worry that I’ll be dismissed. In the meantime, I’ll just keep doing what I’m doing. 

One thing this summer has taught me, though: If you know what and where your happy place is, get there.

Camille Parker: Be Well With IBD (E70)

In this episode, Camille Parker shares her journey with Crohn’s disease. Diagnosed in 2012 as a high school student, she shares her experiences with inflammatory bowel disease (IBD) through college, marriage and having her first child. Following her passion for nutrition, combined with a desire to be in the health industry, Camille earned her bachelor’s degree in exercise and wellness from Brigham Young University and became a certified personal trainer.

Ten years after her diagnosis, Camille is now combining her education, experience with IBD and passion for helping others into her business: Be Well With IBD. Camille focuses on empowering women with Crohn’s disease and ulcerative colitis to help them to live a healthy life. She donates 2% of profits from her business to the Crohn’s and Colitis Foundation. In addition to diet and fitness, Camille lives her life with gratitude and focuses on finding the blessings in the curse.

Connect with Camille:
www.bewellwithibd.com 
www.instagram.com/bewellwithibd/
www.pinterest.com/bewellwithibd/_created/

Keeping fitness simple

Over the past year, I’ve grown increasingly frustrated with my workouts by making things too complicated to sustain. So, I finally put together a simple sheet to track my daily progress, and I couldn’t be happier.

For those who know me well, fitness is — and always has been — a big part of my life. From gymnastics to fitness competitions, spending hours in the gym and working out each day used to be a regular thing for me. But as health and time challenges kept coming over the years, I learned to adapt. Whether it was a broken foot or Crohn’s disease, I tried new workouts and made my fitness program match where I was in life.

Lately, trying to find a good balance between my workouts and this fatigue that won’t go away has been frustrating. My at-home HIIT workouts, kettlebell routines and driving to the gym require more energy than I have right now. I want to exercise like I used to, but my body can’t. That is, until now. My workouts are not as intense as they used to be, but I’ve found the right balance by pairing my Cellercise® rebounder with two basic exercises (lunges and push-ups). The combination keeps me in shape and I’m happy with my workouts. Not too much, not too little; it’s my Goldilocks spot.

On one sheet of paper (shown above), I have boxes to check for sauna sessions (S), rebounding (R) and five sets of either push-ups or walking lunges that I do throughout the day. It’s simple, but effective. I can also quickly check off what I’ve done without having to open an app and enter sets or reps. I don’t overcomplicate it anymore. If I miss a day, I miss a day. Keeping it on one sheet, however, does keep me motivated. I’m also less stressed each day as I work to check everything off!


Note: I’ve mentioned it before, but one thing I love about the Cellercise rebounder is that I control the intensity. If I’m having a good day with more energy than usual, I can jump harder. Other days, I might take it slower. The Cellercise rebounder meets me where I am, and I’m in control of my workout.

Beth Coldrick: Crohn’s and ulcerative colitis warrior, creator of BAO Skincare (E69)

In this episode, Beth Coldrick shares her journey of living with Crohn’s disease and ulcerative colitis for the past 11 years; which included four surgeries during the last two. She is now living with a stoma, raising awareness for inflammatory bowel disease (IBD) and sharing her story and experiences to help others.

Although she struggled with symptoms for most of her life, she didn’t receive a diagnosis until 2009. Despite being on daily medications and high-strength steroids after being diagnosed, she suffered for another 10 years. In 2019, Beth had her first surgery to remove most of her large bowel and be fitted with a stoma.

During those years, as her IBD worsened, Beth made significant changes to her lifestyle that included moving back home and changing careers. Creating a new path for herself, she used her skills and passion to launch an organic vegan skincare brand in 2018. Since then, and after three more surgeries, she has been able to transform her life. Today, Beth lives her life to the fullest and is thriving with a permanent stoma.

* * *

Learn more about Beth and her skincare brand, BAO Making Skin Happy:

Links to references in this episode:

Holly Fowler: Ulcerative colitis warrior (E68)

In today’s episode, ulcerative colitis warrior Holly Fowler @hollsfowler shares her story of living with inflammatory bowel disease (IBD) for nearly 14 years. During that time, she’s been hospitalized more times than she can count (including once in a foreign country!) and, despite her diagnosis, has proceeded to have a career in corporate marketing, travel the world, run a marathon and build her own business. She’s learned to put her health first and now shares her raw, unfiltered experience with IBD to help raise awareness and connect with others in the IBD community. 

Holly is a certified health coach and the founder of Colitiscope Nutrition, where she offers health and lifestyle coaching for those ready to reclaim their lives and get back to doing what they love. She also offers numerous freebies on her website for those living with IBD including a releasing shame workbook, seven-day workout guide, healing grocery list and her masterclass, “7 ways to hack your health and make more money.”

**New program launch: Warriors Rising**
Specifically designed for women with Crohn’s and colitis, Holly is launching her new group program, Warriors Rising. This 12-week program will teach women practical ways to get into — and stay in — remission, learning about nutrition, fitness, mindset, stress management and more. 
https://colitiscopenutrition.com/warriors-rising/

Follow Holly online:

https://colitiscopenutrition.com/

https://www.youtube.com/c/HollyCampbellFowler/videos

https://www.instagram.com/hollsfowler/

Lauren Cunningham: Crohn’s warrior and recipe developer (E67)

In today’s episode, Lauren Cunningham — a Crohn’s disease warrior, recipe developer, integrative nutrition health coach and major foodie — shares her journey with inflammatory bowel disease (IBD). She talks about how she turned her health struggles into her passion, healing herself from the inside out and helping others along the way. Lauren shares her journey with Crohn’s disease — from surgery and total parenteral nutrition to being diagnosed with additional rare disorders — and how she balances her life now with IBD.

BONUS: Be sure to sign up for her mailing list on her website to receive her free recipe book for a low-residue diet.

https://laurencunningham.co/
Instagram @laur_cunningham | https://www.instagram.com/laur_cunningham/

Heather Hausenblas, PhD: Author and mother of a Crohn’s warrior (E66)

October 17, 2021

In today’s episode, Heather Hausenblas, Ph.D., shares her perspective and story as a mother of a son with Crohn’s disease. Her son, Tommy, was diagnosed with inflammatory bowel disease (IBD) three years ago at the age of 16. Heather shares how she helped navigate his health and ultimately chronicled their journey in her new book, Invisible Illness: An Insider’s Guide to Eliminating Overwhelm and Rediscovering the Path to Health and Happiness with an Autoimmune Disease.

In this episode, she shares tips for parents who have children with IBD, cooking for a family and journaling to track health and patterns. She is passionate about getting people talking about IBD and being more open to sharing their stories to help prevent others from suffering in silence for so long before seeking help.

Fatigue

Steph holding a bottle of pills

Some of you have asked, so here it is. Time for Crohn’s talk again: Fatigue.

Overall, when people ask how I’m doing, I’m doing fine — not optimal, but certainly not anywhere close to being at my worst. My GI symptoms are minor, which, once you’ve had an IBD flare up, anything short of that seems to be tolerable, and my kidney function continues to hang out where it’s been for the past couple of years.

The one symptom that I continue to fight, however, is fatigue. For those of you who also feel the effects of autoimmune fatigue: I get it, I’m in the same boat. Some days are better than others, but every day is just a scale that ranges from tired to exhaustion. Some days I feel like I’m on the brink of getting sick — the inside of my head feels cold and my body is run down. Other days I feel like I’ve been awake for 36 hours, when in reality I just woke up. And, some days, I feel the desire to just stick my head in the sand. I wake up two to four times a night and each time, the first thought that pops into my head is, “I’m so f*&%^ing tired.” I think I’m starting to forget what it feels like to not be tired and I think I’ve now recalibrated what “feeling good” means.

In any case, I keep telling my doctors (primary care, GI, and nephrology) that I’m tired and, to their credit, they keep running tests looking for the reasons why. On my most recent visit to GI clinic just about three weeks ago, my doctor ordered 100 different tests (urine, stool, and blood) and an X-ray. I didn’t hear anything for a week; then, I got an email notification that a new prescription just shipped. When I looked up what it actually was: fiber.

So, frustration seems to be the second worst symptom that I fight after fatigue. A day after the prescription fiber tablets arrived, I got a letter from my doctor that explained she prescribed that after my X-ray showed I was, well literally, full of crap. 😒

As for the rest of the test results, the letter explained that she (my doctor) would send another letter once all the results of the various other tests were in. I actually have access to my lab results as they are done, they get added to a section in the online MyHealtheVet portal that the VA offers, but I obviously don’t have the credentials to fully assess what they mean. Which leaves me guessing and Googling until I hear from my doctor. The only thing I’ve been able to decipher so far is that a few of the immunoglobulin tests were high, which makes sense to me with two autoimmune diseases, one of which is named immunoglobulin A (IgA) nephropathy.

Perhaps fiber is all that I will be prescribed. I should be hearing soon from her on whether the results will warrant us changing course. In the meantime, I constantly work on being present and grateful for the energy (whatever level it is) that I do have. I recognize that, realistically, it will continue to decline as I age, especially if my autoimmune diseases get worse. While I may not be signing up for any more Tough Mudder runs, I’ll continue to do what I can and appreciate each day.

So when you ask how I’m doing and I say fine, now you know what what fine means.