Hey there, quick intro about me and my experience with Cystic Fibrosis Related Diabetes (CFRD), and some questions/help I could use (I'm not the best with diabetes terminology). For those that don't know, Cystic Fibrosis is a multi organ disease primarily affecting lungs and digestive system (pancreas). Essentially the pancreas starts to get damaged enough on a few of us and we end up with a diabetes that is treated most similar to Type 1 as we use injectable insulin (body no longer produces). In addition we are on constant medications for lung infections (antibiotics, steroids, mucus thinners), and digestive medications (enzymes, domperidone, omeprazole). Therefore being diagnosed and having to inject wasn't too much of an issue.
Anyways in the summer of 2009 (at the age of 20), I started getting super thirsty and my piss/body odour started to smell like maple syrup so I googled the symptoms, and lo and behold I was diagnosed with CFRD. I probably should've been diagnosed sooner, but it's tricky as the pancreas can still haphazardly produce insulin in the early stages. To combat I was given Lantus and Novorapid pens, and was put on carb counting. I was checking and logging meals, the whole shebang, until I felt comfortable enough with guestimating carbs, however I still check my blood sugar 4-6 times a day.
For the next 8 years I've been managing it "okay," I would say. On top of my other treatments, I rarely miss a dose of insulin, and I carb count to the best of my ability, but I still can't seem to get a solid stretch of consistency, and the diabetes clinics I've gone to seem to be little help. I get eye checks yearly, and a1c checked every 3 months(last I remember was 7.1). I am also fairly active, weightlifting 5 days a week. The main issue I deal with is high blood sugar spikes (aside from the spikes while taking prednisone) when eating meals. With CF our digestion is poor so we need to eat large quantities of food to maintain weight, however for me at least, it seems when I eat this large calorie dense foods, they result in uncontrollable blood sugars.
For example if I eat a pizza (no dairy, or cheese alternatives), I will use my carb count measure (1iu per 15g of carbs) right before consumption. This method will result in an immediate drop about 45 minutes-1 hour after eating, and I will correct with some glucose. However anywhere between 4-6 hours later (sometimes longer) I will see a huge spike in blood sugar. I figure it is my body digesting the meal slower and so the carbohydrates don't get broken down until much later resulting in the spike. This also happens to me with other larger meals, and so has resulted in quite the conundrum because I need to consume large calorie dense meals, but also need my blood sugar stable. It seems my body digests carbs from sources differently and so using the 1iu to 15g of carb is not an effective tool anymore.
In addition I seem to have issues with carbs in the morning and quite late at night, in terms of insulin resistance. (have to take extra in the morning, and at night they can sometimes spike in the middle of the night). I have tried keto, but unfortunately cutting carbs is not an option as it's a struggle to maintain weight cutting them out. Had some digestive issues with the all fat/protein diet... felt good, but lost about 5 pounds and it just wasn't sustainable (also since I don't consume dairy as well).
It has just got frustrating to the point that I need some advice/tips from other diabetics to help me get these sugars stable. I'm not really comfortable with wearing a pump, I'm already stuck doing breathing treatments for 4-6 hours a day so I don't like being hooked up to a machine the rest of my day. I would be eternally grateful if anyone can provide tips/tricks to help me getting my blood sugars more stable, as I'm getting frustrated with it.
Social Plugin