#global gut dysmotility

[blindgamermisadventures]

I finally have a diagnosis!

After three long and painful years I finally have a diagnosis as to why my GI tract and abdomen hurt so badly. Why I am unable to eat or drink. Why I have chronic constipation.

For years doctors have been saying it’s all in my head and to see a therapist. (Jokes on them I’ve been seeing one since childhood! Hasn’t changed anything.) They’d give me medication that didn’t help.

Tests kept coming back normal which made me feel more and more crazy.

My mental health fell a part as doctors and medical staff would gaslight me insisting there was nothing wrong with me. Making me constantly question my sanity. Breaking me down little by little.

I finally was refered to one of our state’s research hospitals. They have a clinic that focuses on motility disorders.

My results came back and they say I have Global Slow Transit. Also known as Global Gut Dysmotility.

This means my entire digestive tract is affected. It moves much much slower than it should. This causes food and liquid to get backed up. This is what causes the early satiety, pain, nausea, bloating, and constipation.

They are putting me on Motegrity and Mirtazzapine. I get to get off linzess which I am grateful for since they were a pain to put in a syringe (or more accurately, what I have heard. My caregiver does that). I hear the side affects can be a lot though so I will brace myself and hope for the best!

I am also having appointments with a neuropsychologist and neuro nutritionist. I never even knew the former existed so it will be interesting learning what they have to say.

I desperately needed to talk with a more advanced nutritionist so I am grateful this opportunity arose. I have one provided by my DME, but they were at the end of their knowledge.

I am not tolerating tube feeds well. I only am at 30ml per hour only consuming around 2 cartons of Kate Farms Peptide 1.5 formula per 24 hours. Let’s just say I am malnourished and under weight (again).

Whenever I would try to increase it (or sometimes even it being where it was) I would complain of my intestines feeling engorged and my pain and nausea being off the charts miserable.

(This is where they say the neuropsychologist can help)

So talking about how to best get nutrients and hydration would really help right now. Every doctor has scoffed when I have brought up TPN but I fire back with well if I can’t eat and drink orally, not tolerating tube feeds well, and am underweight and malnourished then….whats the alternative? I hope we can discuss such alternatives at our first appointment. Does anyone have any good alternatives or arguments for or against TPN? I would love advice.

In the end I would love to try a community now that I have a confirmed condition. Is anyone else affected by this condition? How similar and different is this to gastroparesis and intestinal dysmotility? I would love to have other tubie friends. I am lonely.