It has been over 7 months since I was diagnosed with Gastroparesis, so I thought it’s probably about time that I started attempting to get my confused, fuzzy brain around it. For me this means getting all of my thoughts out onto paper (ahh fresh internet paper) in order to make some sense of something that is utterly confusing and something that I’d much rather ignore. Unfortunately Gastroparesis doesn’t like to be ignored though! (Cont)
I should probably warn you now, Gastroparesis isn’t sexy (but what illness is?). What I mean by not sexy is it involves vomiting, diarrhoea, bloating, pain, dehydration, mushed up food and a hell of a lot of tears! It’s all part and parcel of this shitty complication (no pun intended!) and sadly it comes with some pretty gross stuff. So to all of my readers… I’m sorry.
This blog is called from the top because it has taken over 6 years for my Gastroparesis to be diagnosed and, since I’ve started talking about it online, I’ve realised that lots of other people with diabetes have similar issues and haven’t been able to resolve them. So in a way I’m hoping that the blogs I write will help to raise some awareness about this condition. It still amazes me that this is a complication of diabetes yet Dr Google (other Drs are available) and myself are the only ones who spotted it. Sadly Dr Google can’t offer me diagnostics or treatment, hence why I’m writing this 6 years later than I should have. However, now the answers are officially on paper, stamped, signed and in my ever expanding hospital notes, I can finally start getting some help.
I'm not invincible
My past, as many of you know, included me being an incredibly stubborn teenager and adult and neglecting my diabetes management for a very long time. This resulted in consistently high glucose levels, ketones and admission after admission due to DKA (Diabetic Ketoacidosis). At the time I was unable to see the damage that I was doing, thinking that I was invincible (as you do when you’re younger) and setting myself up for a nasty fall in the form of a complication.
Here’s a bit about Gastroparesis that I stole from the internet:
“Gastroparesis is a disorder affecting people with both type 1 and type 2 diabetes in which the stomach takes too long to empty its contents (delayed gastric emptying). The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.”
Symptoms include; Heartburn, nausea, vomiting of undigested food, early feeling of fullness when eating, weight loss, abdominal bloating, erratic blood glucose (sugar) levels, lack of appetite, gastroesophageal reflux, spasms of the stomach wall. (American Diabetes Association).
I’ve highlighted my symptoms in blue but what isn’t often spoken about is D&V caused by constipation, then followed by constipation, followed by D&V, leading to dehydration, causing ketones etc etc. Sexy, right?! As well as the symptoms highlighted above I also had very bad stomach cramps, sleepless nights, time off work and Uni, had to cancel plans with friends and avoided leaving the house when things were very bad. As you can see, Gastroparesis isn’t just physical, it affects a person’s whole quality of life.
I went to my GP a number of times and told him about my symptoms, however he dismissed them and suggested that I was suffering from stress. “I don’t feel stressed” I told him, but as the years went by I grew tired of being told the same thing over and over again until eventually I stopped telling anyone. I coped quite well by using various strategies; over the counter medications to cure my nausea and bloating, thinking of excuses which people would believe in order to escape a night out… I was the master of disguising my symptoms until a few years ago when the nausea became uncontrollable. I was admitted to hospital two years ago, again in DKA; I was unable to eat or drink a thing and I vomited for 4 days non-stop. It was decided that I had food poisoning because I had eaten chicken the night before, however when I said that it has happened on and off for years, nothing was done. When I think back now I wonder if it was assumed by my HCPs that I had slipped back into my old ways and was omitting my insulin again. I was told that investigations were too expensive, but perhaps their thinking behind it was that there wasn’t really a gastric issue, more that I was omitting. However I wasn’t. Thinking back, this is one of those times when listening to the patient and their family is so important.
After that admission I started to speak to my HCPs again about my symptoms. I had been “back on track” with my self-management for 2 years prior to that admission and I was enthusiastic about my diabetes and confident in openly discussing my problems. It took a further 2 years of discussions, symptoms and more hospital admissions, but I've finally been given the test and treatment that I needed.
More about that in my next unsexy instalment!