In today’s episode, Camille Parker shares her journey with Crohn’s Disease. Diagnosed in 2012 as a high school student, she shares her experiences through college, marriage, and having her first child while managing and learning to live with Inflammatory Bowel Disease (IBD). Following her passion for nutrition and 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 has now combined her education, experience with IBD, and passion for helping others to start her own business, Be Well With IBD (and she donates 2% profits to the Crohn’s and Colitis Foundation!). She is focused on empowering women With Crohn’s Disease and Ulcerative Colitis to live a healthy life. In addition to diet and fitness, Camille focuses on living her life with gratitude and finding the blessings in the curse.
I got frustrated in making things too complicated with my workouts over the past year. So I finally put together a simple sheet to track my daily workouts and I couldn’t be happier.
For those who know me well, fitness has been a huge 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 challenges kept coming over the years, I also learned to adapt. Whether it was a broken foot or Crohn’s Disease, I tried new workouts and made my fitness programs match where I was in life.
Lately, trying to find a good balance with my workouts and this fatigue that won’t go away has been frustrating. My at-home HIIT workouts, kettlebell workouts, and just driving to the gym require more energy than I have right now. I want to workout like I used to, but my body just can’t. But now, between my Cellercise rebounder and a couple basic bodyweight moves (lunges and push-ups), I’ve found a balance that’s keeping me in shape and happy with my workouts. Not too much, not too little, it’s my Goldilocks spot.
On this simple sheet of paper, I have boxes to check for sauna sessions (S), rebounding (R), and five sets of either pushups or walking lunges that I do throughout the day. It’s simple, but effective. I also like being able to quickly check off what I’ve done without having to open an app, enter sets and reps, etc. I don’t overcomplicate it anymore, so if I miss a day, I miss a day. Keeping it on one sheet though does keep me motivated, and I’m less stressed each day as I work to check off everything for the day!
Side note: I’ve mentioned it before, but one of the things I love about the Cellercise rebounder is that if I’m having a good day with more energy than usual, I can really increase the intensity of my jump session. The Cellercise rebounder is able to meet me where I’m at–from gentle to intense, I’m in complete control of my workout.
In today’s episode, Beth Coldrick shares her journey of living with Crohn’s Disease and Ulcerative Colitis for the past 11 years. Over the last two years, she’s had four major surgeries and 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, it wasn’t until 2009 that she was finally diagnosed with both Crohn’s Disease and Ulcerative Colitis. Despite being on daily medications and high-strength steroids, she suffered for another 10 years until her surgery in 2019 when most of her large bowel was removed and she was fitted with a stoma.
During that time, as her IBD worsened over the years, Beth had to make major changes to her lifestyle that included moving back home when flares were at their worst and changing careers–using both her skills and passion to launch her own organic vegan skincare brand in 2018. Since then, and after her original surgery in 2019, she’s had three more surgeries and has had her life transformed, thriving with a permanent stoma.
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Learn more about Beth and her skincare brand, BAO Making Skin Happy:
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; 7-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/
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 as many others along the way as she can. 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.
In today’s episode, Heather Hausenblas, PhD, shares her perspective and story as a mother of a son with Crohn’s Disease. Her son, Tommy, was diagnosed 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.
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 while.
But the one symptom that I continue to fight 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 pure 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 2-4x 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. Well, on my most recent visit to GI 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 little over a week and then, I got an email notification that a new prescription just shipped…and 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 came, 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 doc) 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 is no surprise with two autoimmune diseases, one of which is named Immunoglobulin A (IgA) Nephropathy.
So, perhaps fiber is all that I will be prescribed, but, who knows. 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, knowing that realistically, it will continue to decline as I age, if my autoimmune diseases get worse, or a combination of both. So, I may not be signing up for any more tough mudders, but 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.
It’s been a while, but I’m back with another solocast episode of the podcast. I wanted to share a quick peek into what life has been like during the past year for me from working at home, my morning routine with Crohn’s, and balancing life and fitness with fatigue to my recent kidney biopsy. I plan to connect with more of my fellow IBD warriors and bring you all more podcast interviews to listen to, but until then, I hope you enjoy this quick solocast!
As I’ve navigated my Crohn’s Disease journey over the past 15+ years, I’ve often heard that if you have one autoimmune disease, it’s not uncommon to develop another. After a quick search yesterday, I learned that the numbers actually reflect that 25% of patients with an autoimmune disease have a tendency to develop another. Which is where this new chapter in my story begins. As most people will be spending the next few weeks counting down to Christmas and New Year’s, my own holiday countdown just got eclipsed by a new one that ends with a now-scheduled kidney biopsy on January 5th.
Over the past few weeks, I’ve been back and forth to the hospital getting repeat labs done, checking creatinine levels in my blood and both protein spillage and blood in my urine. My first set of labs in November was originally done for a January follow-up appointment with my nephrologist – just a typical annual appointment to monitor how things are going with my kidneys. But, when the results came back and showed my kidney function was trending in the wrong direction, we repeated those labs and scheduled an in-person visit this past week to talk about a biopsy. I’ve now had three sets of labs in the past month that all showed high creatinine levels in my blood, microscopic hematuria (blood in urine not visible to the naked eye), and now proteinuria (protein in urine). My nephrologist is thorough and the watch-and-wait period is officially over.
At this point, all signs point to an autoimmune form of kidney disease called IgA Nephropathy, but only a biopsy can confirm the diagnosis. While this may appear to be sudden, I’m not surprised at what’s happening. I had my first referral to the renal clinic back in 2016 when my gastroenterologist then noticed elevated creatinine levels. But, things settled back down, my labs were OK, and time went on. In 2018, things escalated when I saw visible blood in my urine – a first for me – and I wound up back in the renal clinic under the care of a nephrologist. Since then, we’ve just been monitoring my labs and looking for signs of disease progression. Things looked stable for a while with just microscopic hematuria, but now there’s protein and elevated creatinine.
There are not always obvious signs when kidney function declines, but I can say that for the past three months, I’ve felt pretty crappy overall. I personally view this as serendipitous timing that my labs for my January appointment fell right when I was at my breaking point. There were a few nights in late October/early November that I was in tears because I was so tired of feeling tired, tired of waking up five times a night, and tired of feeling nauseous and not myself. I’ve come to know my body well over these years dealing with Crohn’s Disease and I knew something wasn’t right…I just had to wait for the labs to catch up to how I felt, finally giving a clear indication of what was happening and what to do next.
While I’m not looking forward to having a kidney biopsy done and I’m feeling a bit anxious about the whole thing, I know I’m in good hands and it’s the right next step. At this point, I can’t say enough how important it is to have a doctor who is truly a partner with you in your healthcare. My nephrologist spent over half an hour sitting with me and talking about the risks and benefits of having a biopsy and what was happening with my kidneys. The thing that really resonated with me during our conversation is when he told me that he never recommends a biopsy unless he’s at the point where even if the worst-case scenario did happen, there would be no question for him that the biopsy was the right thing to do. I know a biopsy is not a decision to take lightly, but I also know there’s a huge benefit to discovering what is happening and having all the information available so that we can make the best decisions about care going forward. If the biopsy confirms IgA Nephropathy, it will also give valuable information as to the aggressiveness of the disease, how much damage has already been done, and clear guidance for treatment.
I don’t think I’m nervous – I feel confident in the abilities of my healthcare team and the facility that I’ll be at – but I am anxious. I feel my stomach tie itself into knots when I think about the actual procedure (confirming to myself that I would make a terrible doctor or nurse, as I would likely pass out for everything). But, one thing I’ve learned from being a part of the Inflammatory Bowel Disease (IBD) community for almost 20 years is that you are not alone in your journey and many others are going through the same thing you are. There is strength in knowing that others have already faced what you are about to and comfort in knowing that an entire community understands what you are going through. And, on the plus side, I should be nicely sedated for the procedure, so there is that!
Aside from knowing that I’ll be one step closer to knowing what’s happening with my health, the silver lining I see right now is that I’m still allowed to eat plenty of protein! Those who know me well know that I love a good steak and meat is the one food that is always, reliably, Crohn’s-friendly for me. As we’ve been monitoring my kidneys over the past year, I’ve been increasingly concerned about how much meat I eat and whether it’s adding fuel to the fire. But, even though my body is spilling protein into my urine, eating less won’t stop the disease. With IgA Nephropathy, the immune system releases Immunoglobulin A (a protein that helps your body fight infections) and those Immunoglobulins get stuck in the kidneys and cause inflammation, which then causes the kidneys to leak blood and protein. So, the protein leaking is a symptom, but me eating protein isn’t causing the damage. So, I’m not going to worry so much anymore about trying to find vegetables that don’t bother my Crohn’s…as they seem to be elusive or just nonexistent!
As I continue to think about my own health journey, I also realize how easy it is to feel helpless. I’ve tried for years to control my Crohn’s Disease with just diet and lifestyle…and while I’ve been able to stay in remission for about four years without medications, it appears that while Crohn’s was under control, my immune system was busy launching a coup. We can be doing everything “right” and yet, sometimes, there are things that are simply out of our control. For someone like me, who likes to be in control, that can be a hard thing to accept. To that end, I’m continually astonished that any of us are even here when I find myself constantly contemplating how many things can go wrong. Yet we are here, and we strengthen each other, support each other, and care for one another. I’m just one tiny speck on this planet with an entire healthcare team looking out for me and doing everything they can to help me live better and longer. For that, I am truly grateful.
So, I choose not to feel helpless. Instead, I will continue to be as healthy as I can in order to give my body the best chance it has to fight whatever comes its way (even if it’s fighting itself). I will continue to look to my healthcare team for their knowledge, care, and guidance and am grateful that I’ve been fortunate to have many different doctors over the years – and especially right now – who make decisions with me and work tirelessly to care for me and others like me. 💜💚
For three years I walked with a broken sesamoid bone in my foot while on active duty in the Army. To this day, I still remember the constant looks from people who clearly thought I was either making up or exaggerating the pain I felt. They gave me looks in passing, judgement written on their faces, that I’d never before received in my life.