Forgetting Crohn’s (almost…)

Some days, I almost forget that I have Crohn’s Disease. Honestly, I don’t think there’s been a single day since my diagnosis 13 years ago–or even since my first symptoms 17 years ago–that I haven’t thought about Crohn’s or digestive issues. But for the most part, my day-to-day life with Crohn’s is well managed…and although I do think about Crohn’s on a daily basis, there are moments during the day when I really do forget that I am battling a chronic illness, and always will be. Which is why this most recent appointment with my gastroenterologist was a bit of a shock back into reality for me. 

Aside from my colonoscopy in July that involved me saying hello to my doctor for about three minutes before they pushed drugs and I fell asleep…this recent appointment in October was my first meeting with my new doctor (my last one moved away). Right from the start I knew I was going to love her, but as our meeting unfolded, I started to see just how passionate she is about IBD care and understanding these diseases, and how dedicated she is to keeping up with the latest treatments and guidelines. 

Some might think (the devil on my shoulder certainly tries to convince me of this) that because I’m not on medications, I haven’t had any surgeries for Crohn’s, and I haven’t even had an abscess or obstruction, that I’m coasting through life with IBD and always will. While my major flare ups have been few and far between, there have been plenty of missed social activities, anxiety, and pain over the years. So far I’ve been lucky overall, but this is where the wake-up call from my doctor comes into the picture.

She reminded me that just because I’m doing well and may not be experiencing severe symptoms, that doesn’t mean the disease isn’t active or causing other harm. She also explained/reminded me that just because I’m not on immune-suppressing or immune-modulating drugs at the moment, I have a broken immune system–that alone makes it harder for my body to fight off infections. She emphasized how important it is for someone like me, with Crohn’s, to get my annual flu shot and stay up to date on vaccinations for things like pneumonia. And, medicated or not, just the fact that I have IBD also puts me at a greater risk for melanoma and a risk for colon cancer that increases each year I have the disease. 

Since there is no cure for Crohn’s, one of the main goals of therapy is to make sure the inflammation is kept under control. It’s the inflammation that causes so many of the long-term problems and is the pathway for colon cancer in IBD patients. While my experience is purely anecdotal, I do believe this is why fasting and removing processed foods from my diet has been so beneficial and why I’ve been able to stay off medications for about three years now (this time…remember, I’ve gone off and back on before, there are no guarantees). 

I was honest with her and told her about my decision to go off the combination of Humira and Imuran that I was on previously and I even told her that I liked to Google everything and experiment with my diet. I’m happy to report that she didn’t judge me even the slightest bit. She did recommend a few reputable websites–such as the American College of Gastroenterology and the Crohn’s and Colitis Foundation–and encouraged me to get information from those sources.

She also gently expressed concern that I don’t become malnourished or deficient in micronutrients due to inflammation, when I told her my diet was primarily meat since vegetables had been difficult for me to digest. She then let me know that I could see the nutritionist in the hospital at any time–no appointment necessary, I could just walk in. While I have mixed feelings about most standard dietary advice and nutritional training, I may still visit eventually because I like information and would be curious to hear what they say–I believe it’s important to always keep an open mind. Bottom line though, my doctor is a partner with me in this journey and that, I believe, is the most valuable asset that someone with IBD can have.

So what happens now? Well, the good news is, my lab results came back and I have the lowest inflammation markers that I’ve ever had (virtually zero). And, in a surprising twist (at least to me), my iron saturation levels shot back up well into the normal range. I hadn’t expected that since my last test had been so low. The bad news is, my eGFR still puts me at stage 3 kidney disease and two days after meeting with my gastroenterologist, I had another bout of gross hematuria (visible blood in the urine). While the kidney issues are not directly related to Crohn’s, it does reiterate the fact that my immune system is broken (my kidney disease is most likely a form of autoimmune IgA nephropathy; no biopsy has been done though, since it won’t change the treatment plan, which is basically watch and wait). 

I went ahead and got my flu shot a few days after seeing my gastroenterologist and called my primary care doctor earlier this week to get caught up on all my other vaccines (which ended up just being a pneumonia vaccination). My gastroenterologist will continue to order calprotectin stool tests every six months to monitor inflammation levels in my colon and I’ll be seeing dermatology next month to make sure there are no signs of melanoma. Who knows, maybe I’ll even stop by and see the nutritionist while I’m there, too.

At the Veterans Affairs Clinic (Gold team for the win!) getting my vaccinations.

As for my diet, I’m going to stick with my modified alternate daily fasting schedule because it really does seem to be strengthening my gut. It’s been the only variable that I’ve changed in the last couple of months and I’m now able to tolerate a wider range of foods, including sauerkraut, spaghetti squash, mushrooms, and even marinara sauce! Now that my gut is doing well, my primary focus has shifted onto my kidneys (I think I was in a bit of denial about them for a while). I’ve been experimenting with protein cycling during my fasting periods over the last couple of weeks and the most interesting and exciting thing I’ve noticed (other than eating different foods), is that I actually feel like I have more energy and motivation now than I have had in months.

I guess it’s true that the only constant in life is change. My journey toward good health has been, and will continue to be, a long and winding one. Some things work for a while and then they don’t. New challenges arise and another fork in the road appears. Be proactive in your care. Don’t settle. Find a provider who will listen and work with you, always seek to grow and learn, and don’t be afraid to re-evaluate where you’re at. And, no matter what you do, always keep going. 

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2 Replies to “Forgetting Crohn’s (almost…)”

  1. Thank you so much Stephanie! I love reading and hearing all of the stories of so many strong individuals who are taking control of their health. Also who are not giving up on life and accomplishing so much. It truly continues to inspire me.

    To you: thank you for being such an support and encouragement to me.

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