The power of community is an immeasurable tool when it comes to overcoming health issues.
In fact, it’s probably one of the most underestimated.
The truth is we all need someone to hold us accountable and see us through our bad days.
For Jordan, it was the online SCD community.
For me, it was Jordan who stood by me as I worked my way through the SCD diet.
For Alyssa, it was her mom’s support that kept her from giving up.
And it’s just what she needed….
From lying on the floor wondering how she’d get through another day to camping, traveling the world and following her dreams, the SCD diet changed her life.
If you’re needing some inspiration on your own journey, this story is for you.
My Severe Digestive Symptoms Began When I Was A Teenager
I first started experiencing symptoms of Crohn’s disease when I was a teenager and was officially given this diagnosis at age 22, although my mom and I had figured out what was going on before then.
Nearly every day, I was experiencing:
- Abdominal pain
- Frequent trips to the bathroom
During a flare, I had the following symptoms:
- Hematochezia (blood in stool)
- Fecal urgency
- Burning/sharp abdominal pain
- Extreme fatigue and exhaustion
Crohn’s Disease Controlled My Life
Once I was diagnosed, my gastroenterologist started me on prescription medication. Throughout my years battling Crohn’s, I was determined to stay away from heavy duty medications as I knew there were significant risks. Thankfully, I managed to do so for many years and used a combination of two medications that weren’t as heavy.
Most days, I would wake up and wonder whether I would have to call in sick to work, or whether I would have enough energy to accomplish the tasks I needed to do at work or around the house. I would often have to cancel plans because I didn’t have any energy. It was emotionally taxing and frustrating.
More Complications Due To Crohn’s Disease
Some other diagnoses decided to show up, too:
- Chronic anemia
- Vitamin D and B12 deficiency
When my hemoglobin would get too low, I remember going home after work and just laying down on the living room floor and immediately falling asleep for several hours; or waking up shivering uncontrollably under a pile of blankets in the middle of the summer.
Now, when I look back at pictures of myself during the times when I was really sick I get emotional and wonder how I managed to cope during all those years. I pushed myself beyond what I should have, but at the time I think I was so used to feeling “bad,” that it was my “normal.”
My Health Started To Decline Further
I started iron, calcium, vitamin D, digestive enzymes, and probiotic supplements and did my best to modify my diet (all of the doctors and the dietician I saw advised eating soft, easy-to-digest foods). But it didn’t seem to help….
The summer I turned 25, my health took a significant turn for the worse. I was having constant rectal bleeding, dull abdominal pain, my skin was sickly, pale and ghostly. Over the course of a year or two, I had lost around 20 pounds and I couldn’t seem to put any weight back on.
Doctor’s Told Me I Had No Choice But To Start Medications
I had hit a wall and my gastroenterologist told me I didn’t have any other options besides starting Humira. My insurance approved the Humira and I called my parents to tell them. I found out later that it spurred my mom into immediate action.
Mom, my biggest advocate and cheerleader, started combing the internet in every spare moment she had, looking for something that might help me and keep me from having to start taking such a strong biologic.
Discovering The Specific Carbohydrate Diet…
She came across information about the Specific Carbohydrate Diet and read everything she could find, taught herself the ins and outs of the diet, and wrote me an email asking me to consider allowing her to come stay with me in Ohio and teach me the diet, because she truly believed it would make a difference.
All she asked was if I decided to try the diet, to stick with it for 6 weeks. After thinking about it for a little bit I was like, “why not?”. I was touched that she was willing to make such a sacrifice and help me make this radical change. If she hadn’t offered to help, I don’t know if I would have been able to start the diet because it was such an overwhelming prospect.
Accepting My New Diet And Lifestyle
I remember asking mom if I could still eat chocolate, and bread, and steak. I was a HUGE chocolate lover, and bread, rice and mashed potatoes were my go-to foods when I was in a flare. After all, those are “easy-to-digest” foods, right? If only I had known what they were actually doing to my poor, inflamed gut.
Other than wondering if I could really give up certain foods, I wasn’t very nervous about giving SCD a shot. I knew my mom would be there right beside me, and I also knew if it didn’t help, I could stop the diet after the agreed upon 6 weeks and go back to how I used to eat. My fiancé also agreed to follow the diet with me and learn how to cook this new way (my mom is quite persuasive), and having his support was a big comfort and encouragement.
The SCD Diet Changed My Life
Within a week of eating SCD, I was having formed stools – something I hadn’t had in a long time. I remember yelling out from the bathroom to my mom that I had formed poop. We were both doing a victory dance over that!
We followed the Surviving to Thriving eBook throughout the first months of SCD. Having SCD-legal recipes was helpful for the intro diet, and I printed out the charts that showed what foods I could eat for each “stage” and hung them on the fridge. I am an organized, type A, list-loving person, and it took a lot of the guesswork out of what I should try to eat during those crucial first weeks.
(Peeling veggies and cooking produce until it was soft was a huge help for me. It took about 2 years before I could eat raw fruit, and as of last summer I still couldn’t digest raw veggies very well – I’m not a huge fan, anyway.)
My Life Four Years After Starting SCD
I am thankful to report that I have been following SCD for 4.5 years now, and I feel better than I have since first exhibiting symptoms of Crohn’s disease.
It’s taken several years, but I finally gained back over 20 pounds and am at a healthy weight for my body.
In comparison to my energy levels pre-SCD, I have what feels like an enormous amount of energy! I can run two miles and I lift weights on a regular basis.
I can hike and travel (my biggest dream in life is to travel the world) without fear of my health being too bad to enjoy myself.
Last year, I studied for and obtained an additional certification for my work in the health field.
I can enjoy camping now – something I used to hate because I would have to walk so far to get to the bathroom.
I no longer need to have the best bathrooms in town scoped out for emergency stops.
My osteopenia reversed in the first year of following SCD, and my anemia levels have been normal since around that time, too. My vitamin D and B12 levels have improved dramatically.
I Am Reminded That Good Health Is A Lifestyle…
I still deal with the floaters (boo!). And I still experience those moments of panic if I have diarrhea for some reason, or a twinge of weird abdominal pain. It’s like I forget that I have Crohn’s disease on most days, so when my body reminds me I am surprised.
But I think it’s also kind of a shock because I am immediately transported back to those super-sick years. Over time, though, I have slowly learned that just because I am having a random symptom doesn’t mean I am going to go into a flare or go back to that painful place.
My Tips For Overcoming Health Issues
- Get plugged into a support group. There are informative and helpful Facebook groups out there specifically for SCD. It was a comfort to know I had access to a group of people who had been following SCD for years. They were able to answer a lot of the questions I had as a newbie, and it was really encouraging to hear their success stories.
- Taking care of yourself is SO important. I have found yoga to be the thing that helps me the most. I’ve also tried guided relaxation, meditation, and other forms of exercise. Learning to give myself permission to say “no” has been a huge hurdle, but I am getting better at it every day. I have come to a place where I am able to give myself permission to rest when my body is telling me to rest. I have come to accept that it’s ok to read or watch TV or just lay on the couch and cuddle with my dog.
- Think outside the traditional “conventional medicine” box. I have a gastroenterologist and I also see a naturopathic physician, who used to have Crohn’s disease herself. Between the two approaches, I have been able to marry the best advice of both care providers and tailor a health plan that works best for me.
“I can hike and travel (my biggest dream in life is to travel the world) without fear of my health….”
Words like that are the reason we do what we do.
But I know it didn’t come easy for Alyssa.
In fact, overcoming health challenges is rarely an easy process and that’s why we need support from other people.
If you’re ready to start this journey, the first thing you’ll need is our Surviving to Thriving eBook – which will walk you through how to successfully execute the SCD diet.
And the second thing you can do is plug into this amazing support group, where you can talk with experienced SCDer’s and get the support you need to take your health back.
And know we’re here to help, too 🙂
In good health,
P.S – What is the biggest thing holding you back from becoming your healthiest self?