2:13pm May 16, 2013

➸ Fibromyalgia Problems: questions:

fibromyalgiaproblems:

1. I keep getting really really frequent tics in my neck where the subluxed vertebrae is and at the top of the c-spine and that cant be good help?
(muscle relaxers don’t work i’m not sure if it’s a muscle thing, but i feel like it’s more neurological. idk. help.)

2. is there anything you can…

Yes there are things you can do for gastroparesis. Not many, but there are some.

You can alter your diet. Back when I could still eat some, I did a liquid diet, and was able to eat for a few months until the gastroparesis got worse again. I basically lived on Ensure for nutritional reasons and thin soups for psychological ones.

You can take medications for nausea and to get your stomach moving faster. To be on that liquid diet, I was on six different nausea meds at the maximum dose: Phenergan, Marinol, Reglan, Zofran, Benadryl, and Ativan.

Reglan makes your stomach move faster. Unfortunately it can have some severe motor side effects for a lot of people. So my maximum dose of Reglan is half what I could take if it didn’t cross the blood brain barrier.

There is a medication just like Reglan that doesn’t cross the blood brain barrier. It’s called domperidone. It’s hard to get in the USA because the FDA won’t approve it for stupid reasons. And I mean really stupid. Because they don’t want people using it to stimulate breast milk or something weird like that.

There is a surgical treatment where they implant a pacemaker that makes your stomach move faster again. It’s still in the testing stages, but because gastroparesis is a rare disorder with few treatments, they gave it a humanitarian exemption and people are allowed to get it.

There are a variety of feeding tubes.

If you get a feeding tube, you almost certainly don’t want one that goes to your stomach. So G tubes and NG tubes are pretty useless. Because your stomach is the problem. The only thing a plain G tube is good for is if you want to drain fluid out of your stomach, but it’s better to combine it with a J tube, as in a GJ tube, see below. That way you can get food in bypassing your stomach completely.

The tubes that go past your stomach are usually NJ tubes, J tubes, or GJ tubes.

NJ tubes go up your nose, down your throat, through your stomach, and into your jejunum. They’re most often used in temporary situations.

J tubes go through a hole in your abdomen into your jejunum.

GJ tubes go through a hole in your abdomen into your stomach. Then one part of the tube ends in your stomach, while the other part goes into your jejunum.

I have a GJ tube. The advantage of a GJ tube is you can do two separate things. You can get all your food and meds through the J tube. And you can drain all the fluid in your stomach out through the G tube to prevent it either causing nausea or reflux. You can also drain out the gas that causes bloating.

With a J tube or a GJ tube, it’s still possible to eat by mouth however much you want, and it’s completely reversible. So it’s not like a decision you make and then you can never eat again. You can eat as much as you can tolerate. Which for me means sips of ginger ale and nothing more.

Feeding tubes can seem like a drastic step, but if you really need one it’s usually a relief. Because suddenly you’re getting nutrition. And your body feels so much better. And you’re usually less nauseated (for awhile the feeding speed was nauseating me so I had to turn it down). And it can be a huge relief after the pain dies down.

It also of course depends on how well the rest of your digestive system works. But if you do get a feeding tube, do a ton of research into the different types, the formulas, and stuff. Because it’s a huge step and you really need to be sure you’re getting the right one. But despite complications I’m very happy with mine, like so much happier than when I was trying to eat and feeling miserable. I was able to cut my nausea meds in half, I only take three of them now and the rest I only take as needed.

There’s even more drastic steps. Like surgeries. Transplants. Cutting out parts of your stomach, or even all of it. But those usually happen when it’s extremely severe.

So the most common treatments are dietary changes, medications, pacemakers, and feeding tubes.

If you know the underlying condition, there’s also a chance of treating that. But that’s rare that you can affect it much that way. My mother and I both seem to have a neuromuscular disorder that affects autonomic processes as well. My mom had her GI system slow down but not as bad as mine. And when she went on a medication (pyridostigmine) that treated the neuromuscular condition, her guts speeded up again. I’m on pyridostigmine too, and it helps with my muscle weakness but it doesn’t help the gut issues at all. Probably because my gastroparesis is pretty severe compared to her gut problems.

So those are all the treatments I know about. I hope it helps. Sometimes you really have to push to get it treated, too. I ended up in the hospital with pneumonia, and I had to tell them “I haven’t eaten anything more than broth in weeks and I refuse to go home until you find a way to get me nutrition.” They got me on lots of nausea meds and a liquid diet and that worked for awhile. Then I was aspirating more and my gastroparesis got worse and even the liquid diet didn’t work, and I got a feeding tube. They knew I’d die without the tube but I still had to fight them for it because they didn’t value my life much to begin with, and they also have this weird idea that once you get a tube your life might as well be over. They don’t get that a tube is a means to keep your life going, not a sign you’re half dead.

Anyway I hope any of this is useful. A lot of people aren’t told what they can do for gastroparesis because even a lot of doctors don’t understand it. One of my doctors actually tried to tell me that nausea with gastroparesis is rare because most people with gastroparesis just feel full and stop eating! He obviously didn’t know anything about it, given that nausea is a huge part of it for virtually all of us. Even after I was diagnosed, I don’t have a GI doctor. Because nobody around here understands gastroparesis. I’d have to go to a hospital the next state over to find someone who specializes in it.

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