Living With Crohn’s Disease | Ups and Downs

I have been living with Crohn’s Disease for 5 years. And I’ve done enormous research to try to figure it all out.

Living With Crohn's Disease Scientific Research

Here’s what I’ve figured out. As my Mayo Clinic Crohn’s Disease GI specialist is fond of saying… “the one thing we know about Crohn’s is that we don’t know much.”

And that’s the truth. I’m telling you about my journey of living with Crohn’s disease in hopes it will give you a little more information that can help those of you with an autoimmune disease along the way.

And in hopes of perhaps giving you a little inspiration.

Just a Little Disclaimer

Although I am not a doctor, my undergraduate degree is in molecular and cellular biology. And I’m a lawyer, so deep-dive research is second nature to me. I’ve done a very deep dive into the causes, progression, and treatment options for living with Crohn’s disease.

I don’t have all the answers, but I do believe my story can shed some light on those looking for more information. But this in no way should be considered medical advice. Please see your doctor if you have a medical condition.

Understanding Crohn’s Disease

Crohn’s disease is not well understood. It is considered an inflammatory bowel disease (IBD), which is an autoimmune disorder. It is different from ulcerative colitis (another IBD) and irritable bowel syndrome.

inflammatory bowel disease graphic

My story is focused on Crohn’s (since that’s what I actually have!) My road to an actual diagnosis was a long one, as I suspect is the case for many of you reading this.

Patient Stories Living With Crohn’s

Rather than go into the whole long saga that led to my diagnosis, I’ll sum it up with this: I had developed severe (knock me to the floor) abdominal pain, abnormal bowel movements, joint pain in my thumb, and an unexpected (and unwanted) weight loss.

I went to 4 specialists to find out what was wrong. I was basically told by all the physicians that it’s all in my head.

So “toughed it out” for another year and a half, then went to a different GI doc. (The GI I had seen 18 months earlier said he “could” order a colonoscopy, but he would “bet $1,000 that it’s normal, so why bother?” It would not have been normal. I’m thinking he owes me a thousand bucks?? What do you think?)

My new GI doc (18 months later) was a godsend. He actually listened to me! And he scheduled me for an emergency colonoscopy the next morning.

He came out of the procedure with his eyes wide open and told me “I have no idea how you’ve managed to live with this! Your entire digestive tract is completely ulcerated. The pain must be extraordinary.” (Um… yeah… That’s what I’ve been saying for 2 years!)

My case was “by far” the worst he had seen in 30 years. I finally got my diagnosis. Severe Crohn’s Disease.

Treatment for Crohn’s Disease

Now that I had my diagnosis, it was time to “fix” me. My doctor nailed it! He put me on very high-dose steroids (for 4 months), a powerful antibiotic (to fix the infected ulcers), a probiotic (to counteract the negative effects of the antibiotic), Humira (a biologic medicine and his preferred drug for severe Crohn’s), and a chemo drug designed to help my body not “reject” the Humira.

That’s a lot of drugs! But I’m one of the lucky ones. It actually worked. And within 6 months, I felt mostly normal. A follow-up colonoscopy after a year of treatment confirmed the good news – I was in remission. Yay!

Be Your Own Advocate

Fast forward another year. I was still “controlled” with my Humira and my chemotherapy drug. But I could tell the Humira was starting to lose its efficacy (this happens with basically all biologic medications). And the chemo drug, while important, made me feel like crap.

That’s when my real research began. Knowing my Humira would eventually fail (they all do) motivated me to find a new answer to living with Crohn’s disease.

DNA of living with crohn's disease

I also had another strong motivator for finding out a new solution – my hubby and I have a sailboat and we are going to sail around the world in the next couple of years. Expensive infusions and biologic medicines simply aren’t a good solution when you’re at anchor in the Fench Polynesian islands! lol!

Heather and Paul with Oasis Catamaran

Crohn’s Disease and Diet

I have been told repeatedly that Crohn’s is not caused by diet. And I still think that’s true. However, diet has a HUGE effect on Crohn’s. I will be coming out with a full article on exactly how the diet affects the gut imbalances that can lead to or aggravate Crohn’s Disease so I won’t go into all those details here.

But suffice it to say, I read lots and lots (and lots) of anecdotal stories of people who had severe Crohn’s, then they were well-controlled, then decided to go off their meds and attempt to keep Crohn’s at bay with diet (and exercise and other helpful lifestyle changes).

I knew this is what I wanted. I was very motivated and determined to make it work. So I told my physician my plan – go off all meds, eat an anti-inflammatory diet, and begin a meditation routine.

Anti-inflammatory diet for living with Crohn's disease

Not surprisingly, he looked at me like I was crazy! He is a medical doctor, after all. His job is to adhere to the current medical standards. In my case, he had to tell me to stay on my meds (or try a different one). Living with Crohn’s Disease is a lifelong endeavor.

I have a great relationship with him, but in the end, he decided I was better off in the hands of the Mayo Clinic Crohn’s specialist to help guide me through all of these changes.

I met with the Mayo specialist. Told him my story and my plan. He also looked at me like I was crazy! (I expected that…! haha!)

But after much discussion, he agreed to let me do it my way and he would follow me closely.

Diet Can Help With Inflammatory Bowel Disease

Fast forward 8 months. I was off all medications for 8 months. I was very strict with my anti-inflammatory diet. I exercised 5-7 days a week. And I meditated every day. This is how I was living with Crohn’s Disease. And I felt great! (Get my free Top 10 Anti-Inflammatory Foods To Eat and Avoid here.)

He ran me through a battery of tests, including another colonoscopy. Guess what? Everything was normal! He was shocked, to say the least. And he admitted that he didn’t think it could be done, but he also couldn’t deny that it was actually working for me.

His advice was to stick with what I was doing since it was working so well.

Healthy Gut vertical

That was truly one of the happiest days of my life. All of my intense hard work, dedication to my anti-inflammatory diet, and other mind-body efforts actually worked.

Until it didn’t.

Crohn’s Disease Diet – Does It Work?

Like most autoimmune diseases, inflammation is a huge problem for people with Crohn’s IBD. It is critical to keep chronic inflammation under control.

There are many medicines that can help with this. And they all have side effects. So I chose to try to control my IBD with a strict anti-inflammatory Crohn’s Disease Diet, regular and consistent exercise, and meditation. (My anti-inflammatory salad and anti-inflammatory soup have been staples in my diet for a long time.)

I had been off all medications for a year (I can’t tell you how much I appreciate that year!!) and was well-controlled. My colonoscopy was normal. And my labs were all in great shape.

And then I felt that first twinge of gut pain. Two months after my “totally normal” colonoscopy, my brain registered just a hint that “something’s not right.”

I can’t say that I totally ignored it. But I can say that I didn’t do anything about it. I guess I thought my already successful routine of diet, exercise, and mindfulness would kick it. It didn’t.

When Things Don’t Go As Planned

The pain got worse, despite my best efforts. I was devastated. But still convinced I could “fix it.”

I met with my Mayo Clinic specialist. He ran labs and all my inflammation markers were elevated. He recommended immediately going back on all meds. I was reluctant. So he agreed to check again in a couple more months.

I was in extraordinary pain by the time I was due for my labs recheck two months later. I sent my doctor a simple email telling him “I need help.” It was very hard for me to admit that.

The lab results were horrific. All inflammation markers were off the charts. Way off the charts! He scheduled a colonoscopy the following week. The results??

Horrible. My colon was 75% ulcerated. On the “Simple Endoscopic Score” chart for Crohn’s Disease (the sale is 0-15), my score was an 18! My Crohn’s decided to show me who’s boss (and it ain’t me!)

Moving Forward After a Setback

First things first. My gut needs to heal. So it’s back on meds for now. I’ve had very mixed feelings about that. But it’s what needs to happen.

Here’s the thing, though… I was pretty shocked and disappointed at first. I definitely had my “why me” moments. But that setback has led to so many good and positive things.

I’ve dug even deeper into the causes and triggers of Inflammatory Bowel disease. I’ve learned so much. And this new knowledge has opened up my world and my mind to many wonderful and exciting things.

I’ve learned about genetics and our environment. And about epigenetics and how food can turn on or turn off our genes.

epigenetics and gut biome

I’ve taken a deep dive into the gut dysbiosis that can trigger auto-immune diseases. And I’ve learned that there’s so much we can do to help ourselves.

I’ve also learned that nobody is perfect. Eating a great, anti-inflammatory, good-for-you diet won’t necessarily cure all ailments and diseases. But it most definitely will position you for the best possible outcome.

So that’s where I am. And I’m excited to be here. My medicines are working well and I am very quickly on the road to recovery. The speed at which I have recovered has shocked even my most experienced and skeptical doctors.

I credit my diet and way of life for that. I am grateful for everything I have and everything I have learned.

Life is about the journey. I hope you join me on this wonderful, beautiful journey. We’ll help each other along the way. Let’s position ourselves for the best possible outcome!

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