When I was diagnosed with crohn’s disease 14 years ago, everything stopped.
Ironically I was 29 years old, so it was figuratively and literally the end of an era for me. My 20’s had been magical. They were filled with laughter, friends, first love, and the early years of a successful career.
I am so glad that I got to have that decade.
I celebrated my 30th birthday quietly, at my parent’s house. I was living with them while trying to get into remission from a profound onset of crohn’s disease because I was too sick to take care of myself. I remember the night of my 30th birthday. The sky was clear and I could see the stars and I felt…I felt lonely and displaced.
Everyone with crohn’s or colitis has a story. There are people who don’t have horrible cases but a lot of us have some significant heartbreak in our history, even if we look totally “ok” on the outside.
Before I got sick, I left North Carolina (the state which holds my heart) for 2 reasons:
1. I had the opportunity to work as a speech therapist on a unique brain injury unit in Atlanta; as a professional I was excited to have the opportunity because working with patients with brain injury was my professional passion.
2. My family lives in Atlanta, so I thought it would be nice to live near them.
In retrospect, I think that God must have known that my world was going to fall apart and that I would need to be near my family.
1-1/2 years after I moved from the Carolinas to Atlanta, I collapsed at work and was rushed to the hospital where a nurse later found me rocking back and forth in excruciating pain with a fever of 104.7 (F).
The next morning, my GI doctor told me that I had either crohn’s disease or ulcerative colitis; he said that he was not sure yet but that I had some form of IBD (Inflammatory Bowel Disease).
I did not understand that with his diagnosis, my life had changed on a dime.
I remember lying in that hospital bed in horrific pain with my family at my side. When he said the words crohns or colitis, I thought “that means I can’t eat corn” because at some point in my life I had known a person who could not eat corn due to one of those conditions. That is how removed I was from the moment. I did not put it together: the reason I was laying in the hospital, in excruciating pain, bleeding form my intestines was because of this new diagnosis.
I was hospitalized for the majority of that summer and into the early fall. I had to be fed through a central line in my heart because I could not eat or drink anything by mouth.
My friends were getting married and having babies and I laid in bed, in a big hospital in Atlanta. I stared out the windows at the magnolia trees which were in bloom.
Social media was not really “a thing” back then; actually cell phones were just starting to be something that everyone had. Thus, there were no blogs for me to read. I did not have Facebook, Instagram or Pinterest to distract me.
My days and nights were filled with: an insane amount of pain, lamaze breathing lessons by the nurses to coach me to get through the pain, naps, books, a TV in the corner of the hospital room that played 12 stations. I journaled. I slept with a Bible in my bed and missed my dog. I tried hard to laugh and not cry.
I was very scared and nothing made sense.
In addition to crohns, I also had C-Difficile. The C-Diff was resistant to several rounds of antibiotics. It finally responded to a third round. After it cleared I was left with what the doctors called a “profound onset” of crohn’s disease.
I did what any person would do if he/she was placed in a hospital room with no real social outlet for a prolonged period of time in horrific pain, bleeding from the gut, requiring blood transfusions and being fed through a line in their heart: I examined my life and wondered if I had done something wrong to cause everything to fall apart.
When I was younger, I had an unhealthy relationship with food and often chose “skinny” eating over “healthy” eating. I asked God to forgive me for not taking care of my body, I worked through the process of forgiving myself.
I envisioned days of health returning and I clung to faith that one day I would be able to eat again, that I would live without that horrible pain.
I worked through the feelings that any 29 year old woman goes through when her body goes from being desirable to not working correctly. I felt like damaged goods and like nobody would ever be able to see me as beautiful or desirable again. I don’t have the numbers in front of me, but I think that at one point my weight was down in the 80’s. I remember rumors flying about eating disorders and I remember feeling so sad and hurt by that judgment because I really wanted to be out of pain, I wanted my intestines to stop bleeding and I wanted to be able to eat again.
It is hard to be judged. I had to learn to let go of what everyone was saying or thinking about me.
I was allergic to most of the medications used to treat crohns which meant that I went through allergic reactions and they were scary. They also left me feeling hopeless and concerned that maybe nothing would work.
I remember one particular moment in an ER when I was so incredibly sick. I was in the hospital bed, throwing up and simultaneously passing blood from my intestines. My GI doctor ordered blood transfusions. I then watched him ask my parents if they were willing to let me to fly out of state to one of the country’s top IBD clinics because the Atlanta doctors could not seem to get my case under control. When he asked that question, the look of grief and hopelessness that washed over my parent’s faces penetrated the ER. After they agreed, he said, “I pledge to take care of your daughter and I will”. I was looking at my parents and my doctor from my bed; they still looked sad and serious, but a bit of the grief was relieved with his pledge and at that moment he became a hero to me for helping them.
After that, I was admitted (again) and given blood transfusions but I did not have to fly out of the state. Something changed that time and my body started to calm. I started to get well and it has been a very long road to wellness.
I have always said that if someone who was living well with crohn’s disease had visited me in the hospital, I would have felt so encouraged. There would have been a real person, who was living a full life, for me to look to for tangible hope.
While I can’t be the person to walk into your hospital room, I can tell you that I have spent hours on the floor crawling and screaming in pain unimaginable; I have rushed to the bathroom every 15 minutes only to pass copious amounts of blood from my gut (it is gross and painful). I have had diarrhea so badly that I learned about using Boudreaux’s Butt Paste (by the way, it is totally appropriate to laugh at the name of that, I do, however it works).
When I was 30 and just starting to heal, I went to the grocery store in a nice area of Atlanta and totally lost control of my bowels, in my favorite pair of jeans. #LowPoint (possibly #LOWESTPoint)
I have also
Fallen in love with a man who thinks I am beautiful even though he has seen me at my worst ❤
Had a fairy-tale wedding at a winery ❤
Spent nights laughing until the sun came up ❤
I rarely have trouble with crohn’s anymore ❤
Everyone with IBD is different but this is what has worked for me
- I work at maintaining a great relationship with my GI doctor.
- If I feel a flare coming on, I call the doctor. I learned this the hard way when I was younger; I used to refuse to call the doctor because I did not want to admit that I was about to flare nor did I want to have to go to the hospital. Since I refused to acknowledge what was happening, I often waited too long, and I became an emergency admission to the hospital. Now I know that if symptoms start and I call the doctor, they can usually call something in. If I take what they call in and rest, the flare can usually be averted.
- I take my medications as prescribed. Years ago, I was on high doses of multiple medications but now I am on a very low dose of 1 maintenance medication.
- I follow a healing diet. Gut Health is fundamental in healing any illness but especially an illness that involves the GI tract. For years I followed the Specific Carbohydrate Diet (SCD). Now I follow the Autoimmune Protocol of the Paleo Diet (AIP).
- I am involved in support groups so that I don’t feel alone in my walk toward wellness.
- I have completely changed my lifestyle over the years to decrease stress. At times, that has meant walking away from relationships and even positions at work that were not healthy for me. Those decisions have not always been easy for me. However, when you find that you are constantly in flare mode or being hospitalized repeatedly, you must evaluate your circumstances and identify sources of stress which can be removed. As much as possible, choose environments that encourage you to feel less stressed, even if that means making choices that other people might not understand.
- I have learned to deal with stress in ways that help prevent flares. When I feel overwhelmed, instead of allowing myself to focus on feelings of worry, anxiety, or something I can’t do anything about, I focus on something “fluffy”. When the weight of the world is crashing down on me, I will watch a feel good movie or read a feel good book to help alleviate the stress so that I don’t end up flaring. You must find a way that you can “check-out” of toxic stress.
- I take daily walks. See my previous post on exercise and autoimmune disease.
- I practice yoga. See my previous post on exercise and autoimmune disease.
- I journal: this is a great exercise for getting your emotions outside of yourself (especially those feelings like stress and anxiety which are triggers for flares).
- I get good, quality sleep. Sleep is another fundamental key to healing.
- I don’t compare myself to other people.
- I practice gratitude: throughout the day, I give thanks for even the smallest blessings.
I also eat amazing foods now, without pain. Here are some pics of what I have been eating lately
In my experience, the first few years were the hardest because I went from being totally normal to being dreadfully sick. Doctors had to find medications to get my case under control and I had to learn what it meant to live with an autoimmune disease.
It does get better, life does return to “normal” again, and you stop living in constant pain/crisis mode. My best advice: reach out for encouragement and today’s social media world has made that so easy, especially with Instagram and the use of the #.
Just use #Crohns and you will find a community ready to support you ❤