Motility Specialist Follow Up

I had an appointment at 8:30am this morning with the Specialist but let me give you some background on the past two days. I was up all night, really, really nauseated. I took my pain medicine and my anti-nausea medication but it did nothing to get rid the knot in my stomach. To explain how my stomach feels - imagine you're nervous before a test and your stomach is in a huge knot. Then, add an intense burning, sharp pain like you've been sucker punched in the stomach with an ulcer. Then, imagine that you had food poisoning and you just felt like there was a giant greasy ball just hanging out in your stomach. If you combine all of those feelings, that's how I feel on a daily basis with the nausea. That's the best way I know how to describe it.

So, I was up all night getting sick. I thought maybe the vomiting would help but my stomach managed to spasm enough that I pulled a muscle.

I had an appointment scheduled for the Motility Specialist, which was lucky, and got to go in this morning to talk with her about my Smart Pill results. She said that the Smart Pill did show a delay in my gastric emptying, confirming what I already knew, I have gastroparesis. She told me I needed to follow up with my GI doctor now, so I'm wondering what was the point of seeing the Specialist if she's not going to treat me for this rare condition.

She did prescribe an antispasmodic, which should help with the pain after eating. That's leftover from the ERCP that my regular GI doctor did. However, both doctors cannot explain the vomiting. The best theory that I have gotten is from my regular GI doctor - the food that I eat sits in my stomach for days until I get food poisoning and vomit it up. So, essentially, I always have food poisoning. I have to make an appointment with the Nutritionist and come up with a diet plan.

Vomiting is also my pain response, so I hope that once I get this trial for my knee, the vomiting will be cut in half.

The Specialist then told me to see my psychiatrist because I'm already on an antidepressant and anxiety medication. The drug to help treat this is also classified as an antidepressant. You can read about Nortriptyline HERE.

I called his office and I'm waiting for him to give me a call and let me know if he will prescribe it. I just saw him two days ago, and he knows about my gastroparesis. I don't think he'll have a problem prescribing it but I would like to start it as soon as possible since it takes a while to work. This should help with the gastroparesis, some. I don't understand why the Specialist couldn't just prescribe it. It's not controlled. I get the drug interaction thing but she knows ALL of the medications I'm on. Oh well, I'll wait around and see what my other doctor says.

So, that's my news. Gastroparesis is confirmed, which I already knew it would be. I've had the ERCP and I'm going to try this medicine. I would really like to have my normal life back. I miss being a social butterfly and I miss leaving the house.

My friends and family have been a great support network. I cannot tell you how much it means to me for the encouraging words, funny pictures to cheer me up, coming over to hang out because you know I can't leave the house. It really does mean so much to me. And of course, for reading my blog. I wasn't expecting for it to be as popular as it is. I just wanted to say thank you to everyone for being there for me. It really does make me feel better knowing that I have such great friends and family, and of course, a wonderful husband. I honestly could not get through this without you guys.

It's also nice to feel validated that this isn't all in my head. I've gotten that from a few past "friends." I felt isolated for a while because people viewed me as negative and attention seeking, but I know my body better than anyone and I'm glad I stayed persistent. I try not to be negative but I have bad days just like everyone else.

If there is anyone out there who reads this blog and has medical issues, my advice is to find a doctor who will listen. I cannot tell you how many bad doctors I've gone through until I found someone who understood and helped. Keep trying. I know it can be discouraging but you have to be your own advocate.

My doctor was right about starting this blog, though. It has helped me to get everything out and to channel those negative feelings into something positive for someone who may have the same issues I do without a diagnosis. I think my friends understand me better now, too. You can tell someone you're sick all day long and they'll get annoyed at you for always being sick, but you have to help them to understand. This doctor is the best doctor I've had yet and I'm glad that I finally know what's going on.

It's hard living with a chronic illness and it can get you down ... but be strong and fight back. I am going to. I am determined to lead a normal life again, and I will; one day at a time.

My Visit with the Specialist

The Motility specialist visit was today. I told her all about my history of anxiety and how I vomit when I'm in pain. She told me that the gastric emptying test at the hospital might not have been accurate because they were giving me pain medication in the hospital which slows down digestion. So, she is going to give me something called a smart pill.

Here is the information on the smart pill

She says that it's good that my doctor put me on neurontin because that will help. If the smart pill confirms the gastroparesis, then she's going to try Nortriptyline. She says that a lot of her GP patients have had wonderful results with the medication. If I can't keep it down, I can sprinkle it on a teaspoon of applesauce and just swallow it.

Information on Nortriptyline


I hope the smart pill is covered by my insurance, but I'll have to check. If it's not, I'll have to do another gastric emptying test (which hurt tremendously last time) and a barium swallow to make sure that my colon is all right - no polyps,
Crohns, or worse.

The original thought that my regular GI doctor had was that the GP was a result of my gallbladder surgery but the specialist thinks it is the result of a virus. She told me to have hope, that the GP will go away if that's how it started.

I'm anxious about school and not sure what to do. I'm going to search around for an online class. She told me that I can't go to class puking, obviously. She's going to try her best to figure out what's wrong but also suggested that I see a neurologist since all of my problems seem to be nerve related. She also suggested that the neurologist check me for autoimmune diseases. I know that I've been tested for Lupus and that was negative. I may or may not have Celiac.

The specialist also suggested that the vomiting could be caused by abdominal migraines. I have never heard of such a thing.

Info about Abdominal Migraines here

I didn't even know that they existed! She has a lot of theories besides gastroparesis and she's going to check them all. She said that doesn't mean that I don't have gastroparesis but she wants to make sure.

I really liked her. My only complaint is that she talked too fast and wouldn't really listen to any of the questions I answered. She would tell me not to interrupt her. But, I guess she's busy and she can't spend all day answering my questions. Other than that, she was friendly and gave me a lot to think about.

The last resort, she suggested the electrical stimulator be placed in my stomach. But we're going to try the tests to confirm, the medicine to see if it works, and then go to the drastic surgery. I just don't want to to the gastric emptying test again or the test with the barium swallow. I'm not going to be able to keep the barium down.

Her nurse is going to check with the insurance and call me back about the smart pill. Keep your fingers crossed because that's the best test option I have. I hope it's covered. I could use some good news. I'll keep everyone posted.

I've lost close to 20 pounds since March because of the gastroparesis. I haven't been able to wear this shirt in two years. You can't really tell I've lost weight ... but I can. It's not the way I would have chosen to lose weight though. She said that I need to change my diet so I need to meet with a nutritionist - but I have to wait until after the tests. She said for me to eat less fiber and less fat. She said I could eat gluten that not eating gluten really didn't matter. I guess I should start eating it again and get another test done to see if I really do have Celiac Disease.

I just filled my pill caddy. The amount of pills I have to take is ridiculous.

Motility Specialist Appt Tomorrow

Well, I had a bit of a mix up today. One pain management doctor referred me to another. Now, I don't know who to call for refills. Finally, after phone calls to both offices, and after my new doctor telling me that he doesn't call in pain medicine, I finally got both of my prescriptions refilled.

Also, my insurance doesn't cover Lyrica, which is for nerve damage/pain. They will cover Neurontin, so my doctor called that in instead. I start it tonight and I hope that it helps. Maybe it will calm down my stomach enough to keep me from vomiting, pending that it stays down.

I see the Motility specialist in the morning. I'm a bit nervous and I'm not sure what to expect. I know that I need to ask her about the implant the pain management doctor recommends and how that would work with a pacemaker in my stomach if they decide to go that route. Maybe they'll do a gastric bypass ... I'm not sure. The GP is so severe that any relief would be possible.

The drug cocktail I'm on now, that I can keep down anyway, is making me incredibly sleepy. I've slept for the past two days. I'm not entirely sure if that's from shear exhaustion or the drugs.

I need to think up a list of questions for the motility specialist. I think she's going to give me a diet to follow - but I've already cut out all of the gluten. I've been almost on a liquid diet. But everything I eat, like clockwork two hours later comes right back up. Soup, drinks, etc, it doesn't matter. It ALL comes back up.

To be sure that it wasn't food spoiling in my stomach, I went two days without eating (well, I forgot to eat to be honest), so there was NOTHING in my stomach. I ate half of a can of tomato soup followed by some V8 kiwi strawberry juice. I did this around 11:30pm and two hours later, it all came back up.

I'm just tired of not being able to eat. I want to be normal again. I'd like to go and see the new Batman movie, but I can't. The smell of popcorn alone would make me ill. I want to hike and drive without throwing up. I just feel lost and hopeless sometimes. I hope this doctor can help me. I would be game for almost anything to be able to be normal. I want to finish school - I only have a year left to become a Geologist. I'm scared that I won't be able to take classes this fall unless it's an online class. Also, if I have the surgery, I don't want to start out the semester like that. I would like one semester where I can attend classes without ANY absences and coherent so that I can actually learn what I need to know. I'm just so scared.

I'm just so uncertain of what the future holds and that scares me. I really want to graduate. I've worked so hard to graduate. It's so hard to explain to my professors how sick I am. You can tell people you're sick, but they won't understand until they see it for themselves. I had friends come over to hang out with me and they didn't realize how bad it was until I went to the bathroom about 6 to 8 times while they were at my house.

I wonder if anyone else with GP has this issue. I just don't want a feeding tube. I'm scared of that option. I don't think it will come to that, but I have been losing a lot of weight. I've dropped a pants size and a bra size. This isn't the way I wanted to lose the weight. I gained a lot of weight after the knee problems. But, I didn't want to starve myself. I want to eat my favorite foods again. I know all of this sounds completely selfish because I know there are people who have this worse than me.

My mother told me today that my grandfather had something similar. He would vomit after eating too. I'm not sure if he had gastroparesis or not, and I can't ask him now, which makes me sad because I miss him so much. I am not even sure if it's hereditary.

I guess I'll have more to report tomorrow after I talk to the specialist. Please wish me luck!