My niece was with us this week. Dang, I love that girl!!
Back when I was diagnosed with Crohn’s Disease in 2001, I lay in a hospital bed for the majority of a summer and early fall. My sweet niece was about 1-1/2 years old and my precious sister and brother-in-law would drive 5 hours every weekend to see me in the hospital.
Talk about love ❤
They would always put a Gerber Daisy on the front of her little stroller and push her through my hospital door first and she would be babbling away “Aunt Jessie” (she is the only person who was allowed to call me that, I prefer Jessica).
I was so horrifically sick. Prior to that slam dunk into the hospital bed, I had been athletic, I had been a runner. I had been a very successful young adult, I was a hard worker, I was not used to having to stop anything. But Crohn’s Disease, it stopped me (temporarily).
While laying in the hospital, feelings of hopelessness and confusion would wash over me, I fought them, but it was a battle. I was allergic to almost every medication the doctors tried. At one point, I remember being back in the ER, with my GI doctor ordering Stat blood transfusions while I overheard him asking my parents if they were open to sending me out of state to a different IBD clinic because they could not get my case under control.
Then he said the sentence that kind of made me fall in love with him (in a family-love kind of way), he said “I pledge to take care of your daughter, and I will”. I think I threw up on the ER floor after that, quite possibly blood.
I think that the first real “hopeful” moment in regard to what my future might look like came that fall. My parents and I attended a convention in Atlanta led by the Crohn’s & Colitis Foundation. The former Miss America, Mary Ann Mobley was the featured speaker. She had crohn’s disease. As she stood in of us and told her story, I sobbed. I cried a cleansing cry.
For the first time since July 3, 2001 I felt hopeful that my life would continue. This woman was standing up there in front of an auditorium telling her story. She was just adorable and I could relate to everything she was saying in regard to the sheer pain of crohn’s disease. The fact that this gorgeous woman knew what it was like to crawl on the floor, screaming in agony, made me feel less alone.
From that point on, I said that if only someone who had a history of crohn’s, who had put their life back together, had come into my hospital room, maybe it would have helped me through those horrific months. I try so hard to give others hope, at the same time, I know that everyone responds to illness differently.
That being said, right now, I am listening to an ~awesome~ podcast regarding autoimmune disease and role of diet and lifestyle in healing/reversing the disease.
It is really fabulous and I encourage you to share it with anyone who either has an autoimmune disease or with their loved ones.
At the same time, let me qualify my statement with the reality that people will make lifestyle and dietary changes when they are ready. And that is so important to remember. Getting sick with an autoimmune disease is a horrible feeling. All of a sudden, your life flips upside down and you just want to go back to ‘normal’. You are suddenly forced to change so many things. For some people, the thought of changing diet or lifestyle is really the last straw so they might have to come to that decision later (or possibly never). For me, it has worked and I want to share this with you.
I think that the reason I was so ready to plunge into the diet change is because when I got crohn’s disease at 29, I was in the hospital for the majority of a summer and early fall and had to be fed through a central line IV that was inserted into my heart.
One of my best friends told me about the Specific Carbohydrate Diet (SCD) and she went on to tell me that many people with crohn’s who follow the diet are eventually able to eat and live normal lives again. I wanted to be able to eat again. I also wanted to live a normal life again, so if that meant trying the SCD, I was all about it.
Over the years, I heard about how people with crohn’s disease do well with the Paleo diet and I scoffed at that idea because in my mind, the “Paleo diet” meant bacon slathered on top of more bacon (and I can’t even eat bacon due to migraines). For the life of me, I could not understand why a “healthy diet” would be based on eating only meat.
…clearly I did not look into the diet or I would have understood that it involves a TON of veggies and fruits.
I fell onto the Paleo diet out of absolute desperation.
It happened last January during my leukemia relapse. I had grown resistant to Gleevec. The oncologists started me on the new chemotherapy, Sprycel, which is a fabulous drug. However, side effects can include colitis and intestinal hemorrhaging. For one, the drug is coated in lactose as a protein binder. So my oncologist had me taking it with Lactaid but that was not helping. It was like my case of crohn’s which had been “quiet” for such a long time had come back.
I spent a lot of time going back and forth between my oncologist and my GI doctor. I was not having a real crohn’s flare, but my intestines were being torn apart by the new chemo. It was dangerous, given my history of a profound onset of crohn’s in 2001.
We had to look closely at the bone marrow transplant option because we were not sure if I would be able to continue with the Sprycel.
In addition to being emotionally crushed, I was so sick.
I decided that I would go back on the intro diet of the SCD in an attempt to get the inflammation of my GI tract down. I was looking online for SCD recipes that did not include nuts or dairy and information about the AIP (Autoimmune Protocol of Paleo) kept popping up on my search.
I decided that I would give it a try.
It worked! The inflammation in my GI tract calmed and I was (am) able to take my Sprycel without any problems. I do continue to take a Lactaid pill with it.
But, so much more has come from the AIP.
Seriously. I went on it to be able to take chemo, to get my GI tract back to being OK (because I was doing OK before the chemo change). But I was not this healthy, vibrant or pain-free before going AIP.
Crohn’s disease is a disease of malnourishment. No matter how much I ate, I was always struggling to absorb nutrients, my skin did not glow and my body hurt. It is common with many autoimmune diseases to hurt or ache, to have joint pain.
Most of the “autoimmune symptoms” that I used to have are gone now and I have only been on the diet for 7 months.
I never expected it to make such a big difference in my life. I recommend that anyone with an autoimmune disease give it at least a 1 month trial.
There is an awesome “support group” on Instagram which you can find by using #AIP and I think that is very important because it gives you ideas of how to follow the diet with yummy recipes. It also gives you a huge network of people who don’t see themselves as victims of illness; they see themselves as strong people who go through the same fights that you go through.
It is very healing.
Below you will find a link to the podcast. It is an interview led by Eileen Laird of the Phoenix Helix. She shares her story which is so encouraging, in which she reversed Rheumatoid Arthritis through dietary and lifestyle changes.
During this podcast she interviews 5 people whose dietary and lifestyle changes have healed and mostly revered their autoimmune disease (some take low-dose maintenance medications). Today’s podcast interviews include the following diseases:
*Multiple Autoimmune Syndrome
Here is the link to the free podcast (click on the little gray box under “Listen to the show”)