Crohn’s - Iron is Important

Some of you know me, some of you won’t. In this blog post I want to detail my health journey this past year. I recently found out I was severely anemic and it’s been a journey as to find out why & how I ended up with a visit to the emergency room getting a blood transfusion. 

Severely anemic - what does that mean? For me severely anemic meant that my body was not producing enough blood (specifically iron), it didn’t have the right nutrients to be creating healthy amounts. Sure I wasn’t eating a ton of meat or iron-rich food, but for most this does not end up life threatening. 

I’m not sure how long my body wasn’t producing enough iron, but I found myself in 2018 with lots of minor symptoms that I had no idea was a sign of something major. Those symptoms: low energy, lethargic, constantly cold, starting to look pale (I’m a Polish/Swedish blonde girl from North Dakota -what’s new?), the biggest one was my breathing - I started to have problems breathing properly with the smallest of activities - walking up hills, walking up stairs, anything that would get my heart rate up. I wasn’t able to go on hikes anymore or work out. 

I attributed all of these symptoms to me being out of shape, I’m a “healthy” 31 year-old woman, being lazy or out of breath pointed to only one thing in my mind - I’m out of shape. I had no reason to think my body wasn’t producing enough blood - that would never have crossed my mind. And it didn’t. Until November of 2018 where my breathing started to be so problematic that I would start to feel light headed standing up after sleeping, standing in the shower I would have to sit down, hills I would have to stop half way or start to feel dizzy. Finally getting desperate I started working out, I went to the YMCA and started to use the treadmill determined I would get my breathing & lung capacity back to “normal.” I went with Eric and eventually compared my heart rate to his: jogging for 1 minute my heart rate was at 170-190 his was at 90!? I told my partner something was wrong and we were then determined to look into this, but first we had a trip to Hawaii with his family at the end of November, I told myself I would get checked out after that. 

I was so low on energy on that trip, and I suddenly realized standing in a bikini how much weight I had lost, I was at about 105 lbs the smallest I’ve ever been. (I’m petite but THAT petite.)

This is me skinny and pale in Hawaii: 

This was me in Hawaii being exhausted from a walk/hike of about 3 miles. Eric’s parents finally saw the extent of my symptoms on this trip. Which I’m so very thankful for, because that night at dinner Rob (Eric’s step-father) asked me to pull down my eye lid and when I did he looked at me and said “You are anemic.” There was so little blood in my eyes, mostly just pale pink in my lower eye lid. This relieved me, I had a diagnosis! I looked up anemia, all my symptoms fit, right down to chewing ice (which I was weirdly craving all the time for the last 3-4 months and had no idea why.) Don’t ask me, anemic patients crave ice and have heightened smells, for me it was gasoline and sharpie markers. 

I went and scheduled a doctors appointment to check my blood levels when we returned to Seattle. The results were shocking, my hemoglobin levels were at 4.8 -I had no idea what that meant- my doctor came into the room and looked amazed that I was still standing and walking. Hospitals start to transfuse blood in a person when their hemoglobin is at 7. So she sent me directly to the ER to get a blood transfusion at about 5pm Dec, 12th. I spent the next 24 hours in the hospital, having two pints of blood transfused into my body, along with an iron IV to get my levels back up to 7, they then put me on three doses of iron daily after leaving to continue to boost my blood production. 

Cutting to the chase: I’ve gotten my blood levels up to 11 and trying to keep them steady – I have a copper IUD for all you females reading this and I believe when I had this operation it accelerated my blood loss, I usually have had mild periods, with the copper IUD it doubled my menstrual flow, and I have been battling this while trying to boost my blood production. I have to be very aware of my iron intake during this time. 

But where else was I losing blood, how did I get to such LOW levels? 

I was diagnosed with a stomach/stress ulcer in college, so my doctors looked into the obvious –investigating my gastrointestinal track to see if this may have been the cause of bleeding or lack of nutrient absorption. I had an endoscopy, colonoscopy, and an MRI – the diagnosis was Crohn’s  disease. There was inflammation where my large bowel meets my small bowel (the ileum) along with an ulcer.

Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, diarrhea, fatigue, weight loss, and malnutrition (anemia). Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. While there’s no known cure for Crohn’s disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission.

The exact cause of Crohn’s disease remains unknown. Previously, diet and stress were suspected, but now doctors know that these factors may aggravate but don’t cause Crohn’s disease. A number of factors, such as heredity and a malfunctioning immune system, likely play a role in its development.

  • Immune system. It’s possible that a virus or bacterium may trigger Crohn’s disease. When your immune system tries to fight off the invading microorganism, an abnormal immune response causes the immune system to attack the cells in the digestive tract, too.
  • Heredity. Crohn’s is more common in people who have family members with the disease, so genes may play a role in making people more susceptible. However, most people with Crohn’s disease don’t have a family history of the disease.

I find myself in the immune system category as there is no heredity history.

So the journey: I will meet with a gastro specialist on April 9th and talk about the next steps to heal my intestinal track. My sister is a dietician, my mother an ICU nurse, thank god I have their support, recommendations, and knowledge, my sister found this article about a Gastroenterologist at the Seattle Children’s Hospital that has been studying children with Crohn’s  and has been developing a diet that he believes has allowed his patients to thrive living with Crohn’s putting it in remission and without flare-ups.

This gives me hope that diet alone can be used to treat Crohn’s disease. 

My biggest worries right now are our plans to teach abroad in South Korea in October 2019, if I would be put on steroids or immunosuppressants my immune system would be lowered or compromised during this time. I’m hopeful I can take these before our trip and get to healthy stage before that time. 

I’m going to miss gluten, lots of dairy, sugar, beer, and anything else I have to cut out of my life, but to heal my stomach and live without issues I am ready to say goodbye to all of these foods that cause me pain. 

A big shout out to my family, friends, and Eric for their support and concern through this 5 month ordeal. 

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