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.
In today’s episode, Angela Spaulding shares her 16-year journey with Crohn’s Disease. Diagnosed in her early 20s, she spent many years angry–angry at the diagnosis, at the disease, at the world–and in denial. Like many others, she was forced to navigate the highs and lows of Inflammatory Bowel Disease and eventually found humor as a way to help shift her perspective.
In yesterday’s episode, 12-year Ulcerative Colitis Warrior Shelly Sulfrain shares her IBD journey and how an ileostomy gave her back her life. At the age of 29, Shelly was working as a pharmacist and enjoying life, having just finished school. Then, her first symptom of blood in her stool led her to a trip to the emergency room. It took a few more visits to her primary care doctor and eventually a gastroenterologist to finally diagnose Ulcerative Colitis. From there, she faced a number of highs and lows as she cycled through medications and faced life-threatening side effects throughout the course of her journey.
In today’s episode, Logan Crumrine, a Crohn’s Warrior for nearly 30 years, joins me for an open and honest conversation about the disability process. Logan shares his experience of filing for disability due to Crohn’s Disease, shedding light on the entire process and answering many questions submitted by our listeners.
In today’s Crohn’s Fitness Food podcast interview, Raina O’Dell shares her journey with Ulcerative Colitis, talks about the growth and transformation in her life from @rainavsfood to @its.just.raina, and how she’s been able to stay positive – always searching for the silver lining.
In today’s episode, Angie Venetos shares her Crohn’s Disease journey and how it’s impacted not just the way she views IBD, but life overall. From learning to adapt her workouts by listening to her body, to seeing how strong her support network is from the love of her family and friends, she’s rewriting the story of Crohn’s Disease in her life and is working to share a message of hope, compassion, and awareness.