The year prior to my diagnosis, I had daily stomach issues and dark urine. I did not know it at the time, but I was experiencing hemolysis. I assumed it was a poor diet and stress but nothing more than that. I wound up with pain associated with my gallbladder and my blood work resulted in a cold agglutinin disease (CAD) diagnosis.
Eventually, the stomach issues subsided. But fast forward to the present day, and I am again experiencing stomach issues and, as a result, I started hemolyzing. I do experience some hemolysis every day but at levels that keep my hemoglobin (HGB) at 10 or above. However, there seems to be a correlation between my gut and CAD.
Two weeks ago, I was sick to the point where I became very weak. My arms and legs weighed a ton. I had pain in my stomach that was almost unbearable. Also, I had pain in my chest from gas and bloating and I was semi-regular. At first, I thought I had become dehydrated, which is a consequence of CAD, at least for me. This is from the constant hot flashes I experience when my body is trying to compensate for being cold. This is something I must deal with all the time, and I address it by numbering water bottles, and I drink them all day long. I found if I do not drink all 8, I do become dehydrated easily.
Read more about the diagnosis of CAD
I am not sure what I had but it was exactly what I had experienced that time before I was diagnosed. I knew I was hemolyzing since my urine was dark all day long and that normally does not happen. As the days went on, I could not manage the weakness anymore and called my hematologist and asked to come in for blood tests. As I thought, my weakness was due to a drop in my HGB, which was down to 9.5 from 10. It was a small drop, but I could feel it and it was awful.
I spent the week working but nothing else. I switched to a BRAT (bananas, rice, applesauce, toast) diet in the event it was a stomach bug and whatever caused what I am assuming was inflammation calmed down and I eventually started to feel stronger and today I feel normal again. I still have dark urine, but I feel well. I have had a subsequent lab visit and my HGB did bounce back a bit higher at 10.2.
I asked several other CAD patients while this was going on, and they too have stomach issues. Why? What is it about this disease that brings these other issues to the surface? Can it just be inflammation?
I found an article that discusses CAD and its causes that identified bacterial and parasitic infections. It is quite possible that we could have stomach issues due to inflammation and weakened immune systems. However, I did not know that parasites and bacteria could also be the cause.
My doctor suggested that I see a gastroenterologist just to rule out any issues. This recommendation is an important one because I have been listed as primary. As I stated previously, it was stomach issues that preceded my diagnosis, perhaps there is an issue, and we find the smoking gun.
One thing I do know for sure, at least from what I have experienced, is that when my stomach is off it lowers my HGB, and the proof of that is it went back up after it is resolved. And that brings me to what my hematologist has always said: “Do not get cold and do not get sick.” I always assumed he was referring to avoiding getting a cold, flu, or of course, COVID. It never dawned on me that any type of sickness, even small, could affect me in the same way that the cold can.