Today, on Caleb’s Blog, we’re excited to introduce a new blogger joining our team. Her name is Jenna Hopp. She has been struggling with Crohn’s disease for two years and searching for something, anything to help with her symptoms. She decided to start the Specific Carbohydrate Diet and will be documenting her journey and sharing it with us on Caleb’s blog. Today, she asks, will SCD work for me?
I’ve reached the point in my life where I am sick and tired of being sick and tired. It’s been two years now since I was diagnosed with Crohn’s Disease and I have been symptomatic for over three. In that time, countless plans have been canceled; I’ve been advised to find a new career and vocational dream, and I have moved five times, each for mostly medical reasons. A lot of the upheaval in my life is related to all the pain I go through on a daily basis. Most of the day is spent exhausted, internally wallowing in my own personal hellfire of pain.
How to Treat Crohn’s Disease – It’s not like I’m not trying to take care of myself
Although not pleased with the dietary adjustments my Crohn’s has beckoned, for the past year I have been doing a decent job living within nutritionist recommended guidelines. I’ve cut out raw vegetables, beans, rich dairy, and have a low fiber diet. I even spent a year not eating tomato-based products, strawberries, or raspberries because at one point I was told red foods had more acid in them and this would aggravate my GERD. This meant no pizza, which was quite the feat for this native New Yorker. Yet despite all these adjustments, my Crohn’s still seems to rule my life.
To treat my Crohn’s, I get Remicade infusions every eight weeks. This is my second biologic treatment path since I’ve been diagnosed. Initially,
I was on Humira, but stopped taking it due to a miscommunication regarding its availability. I briefly moved to Thailand in the summer of 2017 thinking I could support myself and have the relaxing beach life I thought I needed to heal my gut. I had called the Humira company to ask if Humira was available in Thailand prior to moving and they said that it was, however, when I got to Thailand, no Thai doctors had ever heard of the medicine.
I immediately started Remicade infusions there and they miraculously worked for me, keeping me mostly asymptomatic. Since starting the infusions, they hav
e managed my gastric symptoms for the most part, despite the frequent upper respiratory infections that I get. It is hard to tell if those are from being on an immunosuppressant or a side effect of working at a preschool. I love working with the little ones, but my body does not love being a human tissue. This was one of the reasons that my GI had not been willing to address switching treatments until recently.
At my last infusion, I came into the infusion center having a variety of gastric symptoms that I recently reported to my GI, which had been getting worse. The most bothersome for me was the pain. I had been in crippling pain the past few weeks that rivaled the pain I had pre-Crohn’s diagnosis. The PA who I see for my infusions was alerted because in the year I’ve known her I’ve never complained of pain like this, so she ran a series of tests. It was shown that there was no Remicade in my system and over a thousand Remicade anti-bodies, when there should be the opposite (some Remicade and no antibodies). Additionally, my inflammation markers were extremely high. Anything more than 0.5 calprotectin is considered inflammation. Last year, when I moved to Maryland, this marker was shown to be at 24. This recent test showed it to be at 315. It was clear that the Remicade wasn’t working anymore and something had to change.
The idea of change really scared me. Mostly, I was petrified I would need to become an ostomy lady before the age of 30. I didn’t feel like I would be able to figure out what to do next on my own, so I decided to reach out to others for help. I got very open with my friends about where I was and opened myself up to their feedback. I broke down and finally joined a Crohn’s support group.
I created a page on mycrohnsandcolitisteam.com and got very vocal about the agony I was in. I spoke to every doctor who would hear my worry. I even broke out of my silence on Facebook and made a birthday fundraiser for the Crohn’s and Colitis Foundation where I spoke of my struggles with the disease. The outpouring of support I received was inspirational. I didn’t realize how many people I knew struggling with this disease or other forms of autoimmune diseases, IBD, or chronic pain. Other people’s journeys have inspired me and helped me to realize that I’m not alone.
One Idea Kept Coming Up – The Specific Carbohydrate Diet
Though each person’s story is unique to them, one idea kept coming up that I no longer felt I could ignore- The Specific Carbohydrate Diet (SCD).
At my request, my sister ordered the book “Breaking the Vicious Cycle” for me off of Amazon. Once I started reading it I was quickly captivated and could not put the book down. I don’t think I have ever read a book so quickly. The way that Elaine explained sugars and how they work in a normal body and then a body with IBD just made so much sense to me based on my personal experiences. Since being diagnosed with Crohn’s, I have seen the extreme effects just half a piece of cake can have on me, putting me in bed for at least the rest of the day because of pain and physical sickness. This whole time I have been saying it was probably the heavy cream in the frosting that had gotten me sick- I never once considered it could be the sugar!
At this point, I wanted to do the diet, but was really apprehensive. I have had a mental block around cooking for the past fifteen years. Cooking was my mother’s passion. After she died, the kitchen was the last place I wanted to be, so I have mostly been living off of frozen, canned, or boxed foods since then. This may be a cause behind my Crohn’s, especially given the fact that no one else in my family has the disease. I wanted the change SCD promised, but wasn’t fully willing to put in the effort to make all my meals.
As all this had been going on, I had been undergoing a battery of testing to understand what was going on with my Crohn’s. I did a CT scan, MRI, colonoscopy, and was about to do a capsule endoscopy. Nothing showed the results doctors were looking for. The procedure around the capsule endoscopy here in Maryland was different than the way I had done it in the past. I didn’t think too much about the limited diet to keep during the exam until the day of it. I was ravenously hungry all day. By the time I returned the equipment from the exam at the end of the day and could eat freely, I was ready to eat anything and everything in my sight. I had to stop at my sister’s home at this point, and my eating at her house looked like that of a rebellious four-year-old.
I ate all the cookies and carbs I could get my hands on. It felt like a great idea at the time, but later that night I suffered some serious consequences. I was dizzy, sick, delusional, and was in so much pain that I couldn’t even eat the pizza I had been saving for this occasion. Since reading, “Breaking the Vicious Cycle” a week prior, I had been limiting my carb and sugar intake.
Limiting My Intake of Carbs & Sugar Wasn’t Enough
My experiences this day made it really clear to me that limiting my intake was not enough. I needed the fanatical adherence to the diet that the book spoke of. I needed to make some serious changes. At this point, I felt really ready to live differently.
Although I am scared to get in the kitchen and start cooking, I am even more scared of what will happen if I don’t. I understand why I have to be more careful than the typical person about what I put into my body. As someone with Crohn’s Disease, my body is more sensitive to certain ingredients and environmental toxins than others. If I don’t start taking care of my body now, I am limiting not only my time on this earth, but the quality of it as well. I don’t want to spend my days in bed because of my pain, and I don’t want to feel like I’m not truly living and that I have to compromise my dreams. I refuse to let my pain hold me back and define me anymore.
For that reason, I am giving SCD my all and am going to document my journey with it in this blog. It is my hope that my journey can make SCD seem less intimidating. If only one person feels less alone because of what I’ve written then it is all worth it.