Adventures in Anemia

Let me take you back to 14-year-old me, just a few months after I was first diagnosed with Crohn’s Disease. No one can explain everything you may or may not experience after your diagnosis. It’s a learn as you go thing. Back when I was a baby crohnie I still kind of thought it was just a stomach thing.

To refresh your memory I was diagnosed the summer before I began high school. The first month at school was rough. I was exhausted and would go home and go right to bed. I assumed I was tired because I was waking up earlier to get to school. One weekend I went to Orlando with my family and of course, we went to the theme parks. I was walking around Islands of Adventure and I felt like I couldn’t breathe. After taking 5 steps I felt like I had just sprinted a mile. It didn’t make sense.

I went to my pediatric doctor that week and he did a blood test and sent me home. The next day I was in PE, probably not participating because I didn’t have the energy when an office aide came to get me. My mom was there to pick me up and take me to the hospital immediately. My blood tests came back and my hemoglobin was 5 (normal level is 12-15).

I had no idea what this meant. What the hell was hemoglobin and what does 5 mean? I was being admitted for an emergency blood transfusion. This information was a bit overwhelming and scary.

Once we got to the hospital I was taken to a room via wheelchair because I was too weak to walk. These symptoms came on gradually and because of that, I didn’t notice how bad things were. I adjusted to running on fumes somehow.

That night I received my first ever blood transfusion. My mom was asleep in a cot next to my bed and the nurse had to stay with me for the most of it to make sure I didn’t have a reaction. She sat next to my bed with a flashlight as she read.

The next day there was color in my cheeks and I while I was exhausted from the ordeal I could tell I felt better. I could stand up without being out of breath.

Since then I think I’ve had about a dozen blood transfusions (O+ if you’re curious). It’s not the best solution but sometimes things are so bad that it can’t be avoided. Several years ago I began to see a Hematologist who recommended getting IV iron infusions instead. Less risk involved and could be done in his office and I could avoid a hospital admission. Iron infusions work for me and have vastly improved my quality of life when the anemia gets out of control.

Why do people with IBD suffer from anemia? Well, we aren’t absorbing all the nutrients normal people do. Also when the tissue in our digestive tract is inflamed it bleeds. How much? Enough to require an emergency blood transfusion if you don’t stay on top of it.

How do I stay on top of it? Supplements, diet, and routine check-ups with my doctors. I don’t know how many blood tests I have a year, it’s easy to lose count. I also can tell (usually) when things are going south. About a year and a half ago, I went to Disney World with my mom for a mother-daughter weekend. We love checking out Epcot’s Food and Wine Festival. I was walking around and I felt like I couldn’t breathe, I had to keep sitting down. I was extremely short-of-breath and I immediately figured out that it must be my hemoglobin.

I was able to see my hematologist within a few days and his reaction to my blood test said it all. My hemoglobin was 6.5, which was amazing that I managed to make it to Disney. I didn’t get yelled at, more of a lecture of how I need to keep up with my routine visits even when I think I’m doing okay. I had a few iron infusions that week and within a few days it had kicked in and I was feeling a thousand times better.

So Crohn’s Disease isn’t just a stomach thing, there’s so much more to it than that.