When all is not well..

I finally had my appointment with my new gastroenterologist today. He was super nice and seemed to know his business. Handsome too!! Big plus.

It is a little funny realizing that I am at the age where nearly all the people I encounter who are in professional positions are almost always younger than I am. I checked my guy on LinkedIn and found that he was in school for 10 years and has already been practicing for 4 years.. and STILL I’m older than him.  Blarg.

A little background on why I required this appointment today..

For a good part of my life I have had problems with my stomach and my bowels. When I was young and into my teens I would eat barrels of food everyday and not gain any weight. I had lots of energy and felt healthy, so this wasn’t an issue to me at the time, however, pretty much everyone else around me was very concerned.

Around the age of 25, I was suddenly struck with horrific, unending symptoms similar to food poisoning. I completely lost my appetite and whenever I did eat, I would be vomiting soon after. It got to the point where it would take me an hour to eat a muffin. Then there was the diarrhea. Any food that made it past my stomach would almost immediately be evacuated.

I was throwing up in public bathrooms and, because of the amount of weight that I had lost, it was obvious what the other girls were thinking when I emerged from the stall.

Basically, it was hell.

I am 5’9″ and after nearly 7 months of this I weighed in at 112lbs. My boyfriend at the time was in a touring band and so I was left on my own to try and figure out what was wrong with me. My doctor was treating me for irritable bowel syndrome, to no avail. After that amount of time, I have no idea why he didn’t fucking do me the favour of investigating what else may be wrong with me?

If only I knew then what I know now about the medical system and self advocacy, the situation wouldn’t have gone for as long as it did.

My problems had persisted for so long without any sign of improvement that there were honestly times when I wondered if I was dying.

I remember one situation where I was out on a bar patio with friends and some young girl asked me if I was a model. Her boyfriend, who I knew and was aware of my situation, said that she was only asking because I was so thin. I told her that “I’m not a model. I just have chronic diarrhea & vomiting”. I didn’t mean to be rude. It was just that, by that point, I was so totally exhausted by whatever was wasting me away that I didn’t have the energy to be polite and understanding.

Around the time of my one year anniversary of my illness, I went to see another doctor for other issues relating to mental health. I was experiencing extreme anxiety. A problem that has plagued me since I was about 13. I believe I was prescribed either a benzodiazepine or an antidepressant.

I don’t completely know why, but almost immediately my new prescription seemed to be having a positive effect on both my anxiety and my GI problems. It is my estimation that the physical symptoms that I was experiencing were manifestations of the intense anxiety that I was feeling. A very good example of how the mind can affect the body.

Since that time, I have been diagnosed with several mental health issues and have been treated with various psychotropic drugs and, up until about 2 years ago, my GI issues have laid dormant.

When they did reemerge, I never mentioned them to my doctor because I am already in his office twice a month for mental health reasons. To discuss other problems, I would have to make additional appointments.

My current symptoms included frequent vomiting, GERD, regurgitation, stomach pain, constipation, diarrhea. All the fun stuff.

About 8 months ago, these problems finally became annoying enough that I made the appointment with my doctor to figure out what was going on. He was suspicious of several things and so he began booking me in for tests and to start seeing a specialist.

I had a gastric emptying test and a barium swallow. Both were administered for the same purpose and that was to establish the speed in which my stomach emptied of solids and fluids.

The barium swallow through is exactly how it sounds. You drink a white chalky substance (barium) that is visible on a radiograph. They take pictures of your torso every 15 mins until the fluid has left your stomach. I cannot recall my results on this test.

The gastric emptying test is a little crazier. I was instructed to put on latex gloves and a bib and to sit at a small table. On the table there was a paper plate with a egg sandwich on dry white bread next to a 1/3 full dixie cup of tepid water. I was instructed to not let any crumbs fall on the floor. The nurses weren’t able to enter the room while I was eating unless they were wearing protective gear. Sitting on the floor in front of me.. and I’m not shitting you here.. was the military looking case with “radioactive” symbols on it, which had transported my sandwich from another hospital. It did not taste good.

Once you’ve eaten the sandwich, you sit for something like 15 – 20 mins before you are called back for your first set of x-rays. Much like the barium swallow, they repeat pictures at 15 – 20 min intervals until your stomach empties. I was told that the test would take about an hour.

4 hours later…

Finally, I was told that my test was taking too long and that they would take my progress up until that point to extrapolate the results.

Apparently a normal person empties about 50 – 60% of their stomach after one hour.  I was able to empty 10% after 4 hours.

This is a very clear diagnosis of gastroparesis, which is a rare motility disease effecting your stomach muscles and the vagus nerve. There is no cure and people do die from the disease. Treatment includes drugs and potentially even a medical implant.

I have yet to take the drugs that have been prescribed to me because they are essentially muscle stimulants and come with potential side effects affecting the heart, like palpitations and arrhythmia.

After so many years of dealing with anxiety, the possibility of heart issues really bothers me. When I used to suffer from panic attacks, I would frequently experience palpitations, to the extent that I have had to wear a halter heart monitor on two separate occasions.

I had an ECG today and have been instructed to take the meds. If my doctor finds an issue with my heart then he will be in touch and I can go off the medication. I will have a second ECG in a month to see if there has been any change to the control test.

I have already been seeing my GP and a nutritionist for my gastroparesis and so my appointment with the specialist today was to discuss my bowels and my esophagus.

As far as my bowels, he had me up on the table and gave my belly a feel. He used a bunch of medical terms that were basically code for “you’re constipated”. Problem is that I am constipated while also experience a motility issue with my stomach. It implies that the issue goes throughout my GI tract.

Finally, we discussed my esophagus. We were to address my constant vomiting and regurgitation. One of the reasons that I vomit and regurgitate is because there is always undigested food in my stomach. There is suspicion that my esophagus is abnormal because when I do vomit, I don’t heave as is normal. I am able to simply tip my body over, wait, and then my stomach contents just sort of pour out. There is concern that the valve at the top of my stomach has somehow lost its elasticity and is therefore not keeping food down properly.

To fix this, the only answer would be a surgical procedure that apparently comes with some risk. I am unaware of all the details at this point because I have only briefly discussed it with my GP. I will be undergoing an endoscopy in January to get a clearer picture of what’s going on down there and then I will get the low down from my specialist.

It’s a lot to take in. Especially once you start doing too much reading online and learn about mortality rates and feeding tubes and other bullshit like that. For now, I am okay and I am not planning to worry about all this stuff until it becomes unavoidable. As long as I keep up the lifestyle changes I have been forced to make, then hopefully that won’t be for a long time.

What lifestyle choices, you ask?

WELL, as a vegan, it has been difficult, to say the least. My diet has to be no fat, no fibre.. or the absolute least amount possible. I am not able to eat leafy greens, legumes, broccoli, most seeds & nuts, tofu, oils, most cereals, most berries, fruit with the peel.. don’t even get me started.

My diet now consists on trash items, like wonder bread, rice crispies, starches, and so on.

I actually eat pretty well. It’s taken a lot of time and adjustment, but I am beginning to learn what products at the grocery store are gastroparesis-friendly. Daiya, for instance, has quite a few products that I am able to eat. I enjoy pierogies. Soups. And.. well.. rice crispies I guess.

Anyway.. today I am not dying and I’d call that a win.

If you have any questions about gastroparesis, I have done quite a lot of research and I have the ear of many professionals, so please feel free to contact me!!

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