From August Until Now

As of right now, my medication list is extremely long.

I'm taking:

Linzess 290mg - once daily
Phenergan 25mg - three times daily
Zofran 8mg - three times daily
Vicodin 10/325 - four times daily (for my lower back - I keep straining it vomiting and may have shifted the spinal cord stimulator out of place)
Xanax 0.5mg - four times daily
Celexa 20mg - once daily
Implanon - birth control I need to call and get replaced
Restoril 15mg - twice at bedtime for sleep
Trazadpne 50mg - three times daily
Protonix 40mg - twice daily
B-12 Injections

I feel like this when it's time to take my medications:

I saw my doctor in Augusta about what to do since none of the doctors here are listening to me. He was going to recommend a great GI doctor to me but I guess he got side tracked. I'll have to call him and find out the person. None of the ones up here seem to care and they've managed to convince my husband that this is all in my head due to anxiety. My Augusta doctor wanted me to go to the ER but I refused. Instead, he gave me medications and my sister took me to her house and made my comfortable.

I've been managing to eat small amounts here and there. Yogurt and maybe a bite or two of bagel. Nothing substantial.

I started my period on the 23rd - and it made my GP TEN TIMES WORSE! I'm not the only one who suffers this way. I wonder what the connection is between GP and hormones? I want to bookmark this to come back to it and research it later.

The doctor at Emory yesterday wants me to get an ultrasound for my liver. She's worried about my high liver enzymes. She switched around my medication and wants to see if that helps. I wanted to scream at her that my medicine has been switched around before with no relief! Ugh! But I understand conservative measures first. It just SUCKS. I have to follow up with her in six weeks.

I woke up yesterday and vomited directly into a trashcan. I wonder why I couldn't do that in front of the doctor? *sigh*

Oh well.

But, I have a new phone now so I'm easier to get in touch with. My old phone stopped charging.

Hang in there and keep fighting. I'm working on an article coming up about stress relief and how to manage stress. I just wanted to check in.

The top picture is before I ate, the bottom picture is after I ate.

Laxatives - Friend or Foe for Gastroparesis

Laxatives and My Story

As always, do not try laxatives or anything without first consulting with your GI/Motility Doctor to make sure that this is the right course for you. According to Wikipedia, "Laxatives are foods, compounds or drugs taken to loosen the stool, most often taken to treat constipation. Certain stimulant, lubricant and saline laxatives are used to evacuate the colon for rectal and/or bowel examinations, and may be supplemented by enemas under certain circumstances. Sufficiently high doses of laxatives may cause diarrhea. Laxatives work to increase the movement of feces along the colon. Some laxatives combine more than one active ingredient. Laxatives may be oral or in suppository form."

I always see questions about laxatives when it comes to Gastroparesis. The most recent question that was asked by anonymous, "Does anyone use laxatives to manage their GP?"

From my personal experience, the Mayo Clinic doctor I saw told me to use Milk of Magnesia nightly. There are many different flavors of it, so I could pick and choose which one I wanted to take. In the end, I chose cherry. The image source can be found by clicking HERE.

After trying laxatives for about a month, it helped somewhat. My advice, if you are just starting out using laxatives to help constipation with Gastroparesis, try a low dosage first. Then, gradually increase the dosage until something happens. You don't want to start off with a huge dose and suffer for hours in the bathroom, which I'm ashamed to admit has happened to me before.

But, my body has the issue where nothing seems to really move down but everything comes back up. With the Milk of Magnesia, I was able to have a bowel movement maybe once a week and a half which is more than what I was doing before. However, my Mayo doctor wasn't impressed with that and had me up the dosage. I take it nightly but since I barely eat, nothing really comes out. My specific problem is that almost everything I eat or drink comes up, instead of going down.

So, I posed a question to the Gastroparesis Page on Facebook (www.facebook.com/greensnoteasy) and Gastroparesis groups on Facebook to ask about different people's experiences and results with Laxatives. I received an amazing amount of responses.

Jax replied, "I have a laxative regimen for severe slow transit constipation - Movicol liquid 40ml 4 x a day (easier than sachets) I take Paraffin Liquid 3 times a day - Glycerin Suppositories twice a day - Docusate 3 times a day - microlette micro enema (daily) - Bisacodyl (my colo-rectal Specialist swears by that) and various other stool softeners. However none of that moves by bowel so I need it removed. Even pre-op bowel cleaning meds/bowel wash outs don't work for me, I was admitted for a week to have them all to try and kick start the bowel with no success at all. The large amounts I take do cause me to have more nausea/vomiting at times. Some aren't too pleasant to taste and the volumes I take don't sit well. Sometimes I get the crampy feeling that I'm about to have diarrhea but it never happens as I'm so impacted (except overflow after a few months). Before it all got this bad, I simply used Senna (Senokot) 8 a day and they helped provide gentle relief."

Alison says, "Hi Emily. I have to use laxatives every day or else nothing occurs. I have found the best ones for me are bisocodyl (ducolax is the counter name). I have to take a minimum of 6 a day if I take less nothing happens & wen I need to take more then its a stay nearer to toilet facilities than usual. If I take just the 6 I go once any less than 6 I won't go at all. The only issues I get are cramping sometimes but that's usually if they haven't worked the day before. Tried picolax & a dissolvable sachet one before but they didn't do anything so ended up compacted. Not nice lol. It helps but adds extra stress of having to take extra meds but thanks GP is all I can say to that is lol."

Brittany responds, "I live on Miralax daily, take laxatives very often, and do enemas and suppositories also very often. This isn't related to my GP though. I've always had chronic constipation and if I don't take anything, I just don't go. I've been diagnosed with colonic inertia (slow transit colon), and there are talks of having my colon removed in my future."

Brandy says, "I used to before I started using 2 body by vi shakes as meals and just eating one solid meal/small snacks. I haven't had to in months now."

Jami replies, "I was diagnosed with colonic inertia around the same time I was diagnosed with GP. We realized I had been severely constipated my whole life after I developed a rectal prolapse (at age 21). Medtronic has another pacer that's the same as the gastric pacer except that its implanted in your back and helps to stimulate your colon. I got that. It didn't help with my colon (but helped my bladder issues tremendously, so we kept it in). I ended up having to have a colectomy (3 surgeries in one: colectomy, rectal prolapse repair, & pelvic hernia repair). That helped me so much. I never knew what it was like to have a BM everyday. Before the surgery I had a bm maybe once every 2-3 weeks (but I didn't know that wasn't normal bc I've never had a discussion with anyone about the frequency of BM's and because I've only gone once every 2-3 weeks for as long as I can remember). The biopsy of my colon showed that over half the cells weren't functioning at all, which basically means that my colon barely worked and that it might be paralyzed (possibly GP related)? I still have to take Mirolax occasionally but that surgery made my life much easier."


So are Laxatives a friend or a foe? Well, with Gastroparesis, they can be both. I usually view them as a foe because of all of the pain they cause - the cramping, waiting around, and pain. But, there are times that laxatives can be useful. So, I'll let you decide which camp you fall into - friend or foe.

Follow Up with my Regular GI Doctor

Here's what's interesting about doctors, they always have conflicting opinions. The GI doctor read the notes of the Mayo Doctor right in front of me and he mentioned to me that he disagreed and didn't think the NISSEN SURGERY would help me at all. He said that I've been on acid reflux medication for years. The only way this stomach surgery would work, in his words,

If you came to me saying that you had acid reflux and the medicine worked for you but you were tired of taking pills, then I'd do the surgery. But, as of now, you only have a 10 to 20% chance of it working. You need to come back to me before they do any kind of surgery on you because it's not going to work.

I trust him and trust his judgement. Instead, he wants me to follow up with Mayo, have some blood work done (because my lipase levels have been really high), and come back to him to talk about what to do next. He suggested a procedure called ESOPHAGEAL MANOMETRY. Basically, it's a procedure that involves a tube going into your nose and into your stomach for 24 hours. It tests the vomiting to determine if it is stomach acid or actual vomit.

However, his opinion seems to be that my lower bowels are paralyzed or have lack of motility, not my stomach itself. I'm starting to think that too - but nothing seems to go down. Everything seems to come back up. However, my belly was really swollen when I saw him today. On the scale it looked like I had gained weight because my stomach is so bloated, it looks like I'm carrying around a watermelon. I haven't eaten hardly anything but I have been drinking a lot of water. He noticed the bloating too because I am usually lighter on the scale and my face has thinned out.

If you look at pictures of me from last year or the year before compared to now, my face has really thinned out. I've lost a pants size.

He called in stronger anti-nausea medicine for me. I hope that will bring me some relief. This past week has been horrible but I remain optimistic. Something good has to come from all of this. That's going to be my advice for the day:

Be your own advocate. Research things and don't always do whatever the doctor tells you. But, hang on to hope because it's there. Someone will figure this out - and when they do, we're going to throw one hell of a party! =)

Health Issues Update & Bare Your Belly Project

Sorry that it's been a while since an update. I've been really ill. For the past week, I've been sleeping on a weird schedule and I've just been fatigued. I have a lot to update you on!

It started a week ago with flu like symptoms. My body ached and I couldn't stop sneezing. Then, the fever started and I knew that my body was no longer fighting this illness off on my behalf. If you can picture a NyQuil commercial, that was me! I also had an experience that I've never had before and that I hope never to repeat.

Now, through all of these flu like symptoms, I also had my normal stomach issues. I was in the middle of vomiting and all of a sudden, I sneezed. Let me tell you, that is not something I want to repeat. Before I could react, green stomach acid shot out of my nose! The pain was horrible - it burned into my right sinus. I could feel the sinus swell up, and the congestion get worse. I didn't even know that sneezing while vomiting was possible!

The vomiting finally ceased and I was able to clean up some. I tried to clean my nose to help the congestion, but I had nothing to take for it nor could I find my NETI POT. I laid back down in bed because through all of this, I've had absolutely no energy. My husband told me it was time for the doctor and I just nodded. I didn't really want to go because I knew he would poke me with more needles, but I was too sick to argue anymore. Plus, my right sinus was just getting worse and so was my cough. My dry cough progressed into a barking cough. I sounded like a mutated seal.

My husband drove me to the doctor yesterday. Walking out to the car even took its toll on me and I had issues catching my breath. We drove to Urgent Care and remarkably, there was no line. So, I was seen quite quickly for that practice. The doctor came in and looked me over. He made me take deep breaths while he listened to my lungs. I couldn't take breaths without coughing everywhere. I tried not to cough. My blood pressure was back up and I was running a fever. I explained my stomach issues to the doctor, since this was a new doctor, and told him that swallowing all of this draining mucus was making the nausea and vomiting worse. He told me that I needed steroid and antibiotic shots, because I had pneumonia. He elected to give me the shots yesterday to give my stomach a break. He said I could take the pills as of this (Monday) morning.

He called in an antibiotic, steroids (which I HAVE to eat something with or they'll make my stomach worse), an inhaler (which I have to use four times a day for seven days regardless if I feel better or not), and a cough syrup to help me sleep at night. He said in a few days that I ought to be feeling much better.

I can tell you that I already feel better today. I'm able to move around a bit more. I'm still extremely tired and it's probably going to be another week before I'm back to my "normal" self, but I'm glad that I went to the doctor. I really thought my body was fighting it off. I guess next time, I won't procrastinate and just go to the doctor when I start to feel ill. Also, I did some research yesterday and found that the Pneumonia Vaccine has to be re-administered if it's been more than 5 to 10 years since the original vaccination due to declining antibody rates. So, that's why my vaccine didn't hold up. I'll get re-vaccinated when I feel better. I'll need to set up a reminder.

I'm trying to keep up with my other health issues so that I can determine what is causing issues with my stomach. It's hard to stay on top of so many medical issues, but the following are updates on what else, health wise, is going on with me.

I'm back on DEPOT LUPRON for my endometrosis. The GYN said that if this doesn't help after six months, they'll have to schedule a surgery and go in and clean everything out. I'm hoping the injection works because I really don't want another surgery. I need to schedule a GYN visit since I went last year in July. It's hard for me to schedule visits like this in advance because I don't know whether I'll have a good day or bad day stomach wise.

I followed up with my doctor today in regards to my Spinal Cord Electrical Stimulator (SCES) today. My usual doctor was out sick, which I didn't know, so I saw another doctor. When I walked in, they asked me for a urine sample for a drug screen. That caught me a bit off guard since I've never been accosted for urine as soon as I walked in before. I was unable to give them a urine sample because I've been dehydrated and sick this past week. I told the nurse that she was welcomed to draw blood if she needed to, that I had nothing to hide, but I couldn't do the test she wanted today. To my surprise, she said it didn't matter and just dropped the entire thing. I guess they're testing for prescription abuse? I have no idea. I told them about the medications my doctor put me on yesterday, just in case they thought I was abusing hydrocodone. The doctor I saw, who was filling in, told me not to take my cough medicine and pain medicine at the same time because they were basically the same medication. That was good to know.

Additionally, I explained to her that the SCES was still a bit painful to lay on and that repetitive bending over aggravated the muscles around my SCES. After she looked at my back, she offered to do TRIGGER POINT THERAPY for me to help loosen up my muscles as an "add in" to the surgery schedule today. I had never heard of this but I told her that if it helped, I was willing to try it.

So, the staff penciled me in and took me into the PRE-OP part of the clinic. They had me sit on a stool and sign some consent forms. The doctor brought over a long syringe filled with steroids (keep in mind I just had two injections yesterday as well, near the same spot). She felt around my SCES and immediately I felt the knot and told her so. She nodded in agreement and told me that this was normal and a part of the healing process. She counted down and stuck the needle in about four different knots. The first knot she found and injected steroids into, it was like my muscle exhaled. I didn't realize it had been that stiff and knotted up! Once the muscle relaxed, my back felt ten times better. This happened again for the other three knots that followed. The medicine she gave me really did make a difference. I'm a bit scared of steroid injections because I had sepsis from one a few years ago, but this really made my back relax and allowed the implant to sit a bit more comfortably.

She told me that she would repeat the procedure if I needed it again. I thanked her and she gave me a refill on my medications and sent me home.

I did manage to have one accident on the way home, though. I did get sick on the car floor board before I could reach my emesis bag. So, I was out there scrubbing the floor of my car today. The cleaner smell makes my nausea worse. I just need to take it in to be detailed and let someone else clean it. Horrible, I know, but I don't want to make a small mess even messier. I'll be sure to tip whoever cleans it really well.

On a side note, my friend and GASTROPARESIS Facebook Page Creator, LaShelle, started a wonderful project that I want to help support. It's called the Bare Your Belly Project. She writes,

"BARE YOUR BELLY: Fat, bloated, scarred, boney, thin, discolored, abused, beat up, tubed, and painful bellies are not something we should hide away under layers of fabric. People can’t look at our faces and see what Gastroparesis has done to us. How Gastroparesis has changed the way we live our lives, or even what it’s taken away from us. We can’t expect others to know how it feels, or understand our battles, or even revel in our daily victories if we never get off the bench to show them what it means to have Gastroparesis. Would you have believed it yourself if you had never had it or never taken the time to get to know someone who did? It’s time to let go of our reservations of “baring all”. We live with Gastroparesis on a daily basis; we fight for our lives every day by rolling out of bed and touching our toes to the floor for another day of struggling to feed our bodies to stay alive. Every weight gained or weight lost to some GPers is either a triumph or a defeat. If cancer survivors can bare their scarred and broken bodies, we can too. Each and every one of us is beautiful, our ability to wake up and face another day… is nothing short of miraculous strength. YOU HAVE A RIGHT to show off your strength! Bare your scars! Bare your belly for Gastroparesis!"

She made a wonderful video that I would love you to check out and share with your friends! You can find the video, HERE. Please watch and share it with everyone you know. It will help people understand that even though Gastroparesis is an invisible illness, not all of it is invisible. Gastroparesis does leave its mark. <3 Thank you in advance!

New PCP Visit Yesterday

I went and saw my new PCP yesterday. I filled out the patient information packet, which made checking in much easier. That clinic is pretty busy and there were only two doctors working yesterday. I waited around in the waiting room for a bit and noticed this sign:

I had to giggle.

The nurse called me back and took my vitals. She then sat me in a room and asked me a bunch of questions about my medical history. I answered all of them as truthfully as I could.

Then, the doctor came in. He was very friendly but when I told him I couldn't sleep and that I would really like something to knock me out, he refused to give me anything. It made me feel like a pill head but I have extremely bad insomnia most nights. It's like I can't turn my mind off. Anyway, he called in more Bentyl and Zofran for me with refills, in hopes that would help the spasms and nausea. The Mayo doctor cleared me to be back on Bentyl. He made me sit in his office (his office has a lab) for another blood draw, even though I brought my medical records with me from Mayo where they just DID a blood draw. The lab tech poked me about four times so I'm bruised all up and down my arm from Mayo and from this doctor's office.

He said my blood test results showed my triglycerides were high but he said since I'm sick and I probably haven't been eating much, he would retest it later. The total time I spent at the doctor's office - 3 hours.


He also gave me a medication that I've never heard of before. It's brand new and it's used to idiopathic constipation, usually used for people with Irritable Bowel Syndrome. He prescribed it to me so that I could see if it helped. He thinks that's where most of my pain is coming from but I disagree. Yes, it may not be helping the situation but my pain is very intense and it's right where my liver is. Here is the medicine he prescribed and I"m curious if anyone has tried it with positive results:

I'll have to let you know how this new drug works out. My pill case is getting full again.

I went to my other doctor, the one who diagnosed me with ADD, and told him about my anxiety, panic attacks, and insomnia. He switched me from Zoloft to Celexa, for anxiety. He also gave me Trazadone to take at night to help me sleep. I could have kissed him! So, I actually got some rest last night but I've been so nauseated all day. It's hard to function when you're so tired and in pain all of the time.

I found this article and wanted to share it because I thought it was a great read.

Gastroparesis throws your entire life a curve ball. EVERYTHING changes: your diet, your sleeping patterns, your morning routine, your social life, your professional life, your level of physical activity, you name it. I have scoured my brain and can not think of one aspect of life that does not change once Gastroparesis begins to take over. As much as you try to continue being “normal”, it isn’t going to happen. You are kicked right out of the fast lane onto a beaten up wooded path that not many people know about or care to find. You have to learn how to navigate this path and hope that you can find your purpose life. The purpose that you are meant to pursue while living through the ups and downs of Gastroparesis. You are unrolling the path by yourself and have no idea where it is going.

Read more about the article HERE.

Update from this Weekend to Today

I woke up this morning with horrible stomach pains. I started crying. Then, the vomiting started, which I'm glad I had a bucket beside the bed. I just feel miserable but let me catch you up on my weekend.

This past weekend, I had a Leadership Retreat with my fraternity. It's a tradition to have one of these, in the woods off of the grid, to bond together. I was quite proud of myself for surviving the car trip without vomiting in front of my friends, although I loaded up on all on of my medication (which means I couldn't drive). I got to the cabin and picked a bunk close to the restroom. I made sure to bunk with my brothers who wouldn't mind vomiting. I brought a bag of baby food for eating.

While talking to one of my little brothers, I vomited in my mouth. But, I was able to swallow it down, because I was no where near my bucket or the restroom. My little looked at me, knowing what I was doing, and fist bumped me for not getting sick on the floor. She knows how bad I feel but my brothers feel bad that they can't help me. I was amused by the fist bump though. That's not the first time that I've swallowed vomit down. I did that in the car yesterday too. My throat is sore and burnt from all of the vomiting.

Anyway, I actually got sleep on the trip. I don't know if it was because I was in the woods away from electronic devices or what, but I actually got some sleep. Usually, I'm a light sleeper but I didn't hear anything. When I woke up, I felt bad, because apparently, I was snoring. That ran some of my brothers out of the room. I apologized but they were just so happy that I finally was able to sleep that they didn't care. I have really nice brothers.

I ate some lentils during the retreat because I thought they might stay down. I think I ended up vomiting four to six times during the retreat. I wanted to take a shower, because that always makes me feel somewhat better, but it was too cold for me to stand in the shower. The ride back wasn't too bad, I didn't get sick because I loaded up on phenergan and my other medications.

I talked to my doctor's nurse yesterday because I was tired of not being able to sleep. My stomach keeps me up by vomiting all night. The doctor called me in some Ambien to help me sleep and told me he was following up with the Mayo Clinic because they should have scheduled me by now. He's sending me to the Mayo Clinic in Jacksonville, FL.

Honestly, I just want some kind of relief without vomiting. I don't like carrying a bucket around or embarrassing myself in front of my friends, even though they understand. I can't even do anything simple like going to someone's house to hang out because I spend most of the time in the restroom. This is just no way to live. I'm eating baby food but that's hit or miss with my stomach too.

So, I'm waiting patiently to hear back about the Mayo Clinic. If I don't hear back today, I'm going to call both my doctor and the Mayo Clinic tomorrow. I need some sort of relief. Until then, I'm going to take my medication and hope that one day, food will be in pill form.


Something did make me laugh yesterday. Every time I hear about the Mayo Clinic, I think about the scene from Airplane:

Day 7 - Hurts like hell ...

The charge nurse came in and lectured me about walking around the hospital while the nurse was administering my medication. The thing is, I had been walking around the hospital before yesterday - before the complications of pancreatitis hit. Now, it hurts so badly, I'm having trouble getting up and going to the bathroom. My abdomen feels like someone squashed it or possibly I had a line drive hit into it. The pain is sharp and intense.

I was asleep when the doctor came in to talk to me but she's going to draw more blood for lab work to see about my lipase levels. She told the nurse that they're slowly trending downward. I hope so, I'm ready to go home. I'm so tired and I want to actually get some sleep. Having pain medicine every 6 hours isn't really doing me any good - it hurts so much. I don't know why doctors decrease pain medication right after you have surgery, it seems weird to me. You think they would want to make me comfy until I go home.

I'll update more when I talk to the doctor.

Update: The doctor is moving me from IV medication to oral medication and is giving me full liquid trays to see how well I tolerate them. She has decreased my IV fluid intake from 200.0mL/hr to 100.0.mL/hr.

My room was like a party today. All I wanted to do is sleep, since I've gone without sleep for a week in the hospital.

I was visited by:
1. A Physical Therapist
2. An Occupational Therapist
3. My Doctor
4. The Nurse
5. The Tech
6. The Teaching Nurse
7. A Patient Advocate
8. A Patient Volunteer
9. The Floor's Chaplin
10. The Charge Nurse
11. The Charge Nurse's Director


I just really wanted to be left alone. I wish they would increase my pain medication because my side hurts so much. I'm hoping they'll let me go home tomorrow since I was able to keep down the liquids today. I really want some real rest. =(

So, I guess I will keep you updated on what happens tomorrow.

Day 3 - Low Oxygen & Heart Murmur

The nurse just woke me up to give me medicine. Apparently, I had fallen asleep, sitting up, with my laptop in my lap at about 4am. My Oxygen intake dipped down to about 80. It's not supposed to be below 92. So, now I'm on oxygen today.

*grump*

I've called my nurse four times asking for medication. I guess when the bag runs out, she'll have to be in here eventually .... or I can just vomit on her shoes.

I'm really tired but was able to sleep some last night. I'm just tired at the moment and bored.

...and my nurse just cussed out the front desk. =)

I have been calling the front desk since 7am (because well, I didn't have to number to call her directly, so I hit the nurse call button). The front desk never told her I called so she came into my room to check on me.

I told her that I needed my medicine while dry heaving into a bucket. She got angry, started yelling, wrote her direct number on the board so I can call her directly when I need something. She then proceeded to storm out after giving me my medicine and yelling at the front desk.

She have me two Dilaudid. She said since I was written for one to two, and since she remembers me from last time, she said she knew I had chronic pain and upped the dose so it would help longer. She's a great nurse and I had her the last time I was here. She remembered me and I remembered that she's the one I can't play zombie games around! =)

The nurse got my on call doctor to come and take a look at me because of my blood pressure. It's been REALLY high. The bottom number is the 110s. So, the doctor listened to my chest and found a heart murmur. They're going to start me on blood pressure medication and take me down for a test for my heart. They're going to sonogram it to make sure that there's nothing sinister about the murmur. So, I guess that's a good discovery! I didn't know about that one.

My hospital room view.

Can't Sleep & Surgery Update

I have been awake for two days straight vomiting. My stomach is cramped and my knee burns. I called the Specialist today since it's almost been a month with no word about the stupid Smart Pill Test. I think I may have my records transferred to another specialist. She also hasn't called in my anti-nausea medication and I've gone for two days without it or sleep. Every time I lay down to sleep, my stomach makes strange noises and then I end up vomiting violently. The cramps are almost unbearable. My throat is still burnt and swollen. I'm just so tired and worn out.

I did managed to escape the house for a little bit today to vote. It was nice to leave for about twenty minutes.

I called the knee doctor today too but they haven't received my psych evaluation yet. I had it done last Monday and I thought it would be in by now. The office said they would call the other doctor and call me back tomorrow to let me know what was going on. They also are measuring me for a back brace on Thursday. I hope that will this trial, some of the vomiting will stop. Part of my pain response is to vomit, so I hope if I can control the pain in my knee, that I can tell exactly what's wrong with my stomach.

Read about the surgery and trial HERE.

The more I read about it, the more terrified I become. But, if it will help my stomach and my knee to stop feeling like I set it on fire, then I'm all for it.

I need to call my OB/GYN and talk to him about the Lupron injection as well. So many phone calls!

I hope that I can sleep tonight. I also hope the doctor calls in my medicine soon. I'm tired of doctors and surgeries. I've tried to keep myself distracted with TV, reading, and games but it's not working. I've thought about teaching myself Spanish.

Anyway, this is going to be a short entry because I need to go take a shower and try to sleep before I become less coherent.

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.

The Knee Doctor & GP

I managed to wake up early for an appointment with my knee doctor. I explained to him that I have been having issues with my left knee, which the gastroparesis has made worse because I keep knocking it into the toilet. He is going to send me to a pain management specialist. He says I might need an epidural or something that he is not qualified to preform.

I've only vomited three times today, which I consider a great achievement. I also found out that Dinty More is gluten free, which makes me happy! I love beef stew. I ate a small amount of it because my stomach won't tolerate much more than that.

So, the doctor put me on Hydrocodone 7.5/500 and Zanaflex 4mg. I know that the Hydrocodone can cause slow gastric emptying as well but I'm in so much pain that I need something to control it so that I can sleep. The Zanaflex actually does wonders for my stomach and has gotten all of the cramps to relax a bit. I hope that I'll be able to sleep normally tonight.

In the morning, my GI doctor will go over my biopsy results from my colonoscopy. He said everything looked normal, so I'm not going to worry myself about it just yet. He is also making me an appointment with a motility specialist, we'll see how that goes. My husband thinks that I should give acupuncture a try. I've never done that before but I'm open to almost anything if it will make my stomach stop hurting.

I'm still on the search for a new General Practitioner. I need a doctor close to my house. The hard part is going to be trying to track down all of my medical records for her office. I don't even want to think about that right now.

I Forgot to Eat

I managed to forget to eat today. Since I was up all last night vomiting, I took a long nap today. When I woke up, I realized I missed my dosage of medication. Now, it feels like my stomach has been sucker punched (bad cramps) with an overlay of burning.

I'm trying to eat a baked potato in hopes that it will stay down. I need something on my stomach to vomit because vomiting stomach acid hurts. Also, I'm a bit worried about my teeth. What effect will all of this vomiting have on my teeth?

I wish I could control this pain. The pain goes overlooked by my doctor because the vomiting takes priority. I'm also scared that it's nerve pain and if it is, there's nothing I can really do about it. Nerve pain is hard to treat.

Medications, Diet, and Treatment

I have been on several medications for gastroparesis, but none of them really help. I cannot sleep because I stay up vomiting all night. I vomit at least 8 times a day, so keeping medication down is a real challenge.

So, the medications that I'm on right now are as follows:

Zofran 8mg - three times daily under the tongue. Zofran is used to treat nausea and vomiting caused by chemotherapy. It is also used to prevent or treat nausea and vomiting after surgery.

My problem with this medication is that even though it dissolves under the tongue, it's very hit or miss. It doesn't always work to control the nausea. It also has a VERY strong mint taste and when you're nauseated, that doesn't really help.

Phenergan 25mg - four times daily. Phenergan is an antihistamine. It is used to treat allergic reactions and to treat or prevent nausea and vomiting from illness or motion sickness. It is also used to make you sleep before surgery, and to help treat pain or nausea after surgery.

My problem with this medication is that it's hard to keep down. However, it works the best out of all of the antinausea medications. If you get it through an IV, make sure your nurse pushes it slowly. If not, it will burn like hell and blow your vein. Trust me on that one.

Bentyl 20 mg - once per day. Bentyl is used to treat bowel problems including irritable bowel syndrome.

Again, it's hard to keep down tablets. This was given to me to control the spasms in my stomach. It does help, but not enough.

Dexilant 60mg - once per day. Dexilant prevents the production of acid in the stomach. It is used to treat gastroesophageal reflux disease (GERD) and inflammation of the esophagus.

The problem with this medication is that it interacts and effects the absorption of the Levsin. So, I haven't been taking it. Also, it's hard to keep down, even though it's a small capsule.

Levsin 0.125 - four times daily under the tongue. Levsin is used to treat stomach and bladder problems. This medicine is also used for rhinitis, to reduce some problems caused by Parkinson's disease, and for the treatment of poisoning with drugs that are usually used to treat myasthenia gravis.

I have been on this medication for only a few days, so I can't really offer an opinion.

As for diet, I follow this plan:

I cannot have fruits or vegetables, high fat, high fiber, or gluten. That limits my diet greatly. When I eat, it burns in my stomach. Imagine having heartburn inside of your stomach ... and then multiply that by 20. My stomach is pretty much conditioning me NOT to eat. If I do manage to keep food down, it's usually bland. I try to drink Ensure so that I can have vitamins, but that doesn't really stay down either.

The Mayo Clinic says:

Eat smaller meals more frequently.
Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables.
Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet.
Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars.
If liquids are easier for you to ingest, try soups and pureed foods.
Drink water throughout each meal.
Try gentle exercise after you eat, such as going for a walk.

Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine.

Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method.

And believe me, I DO NOT want a feeding tube! An infected feeding tube does not sound like fun.

The Mayo Clinic says that treatments are:

Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.

Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.

BUT, there is no cure. Each of the treatments have serious side effects. I haven't tried either one yet, but I've read about them. The Botox injections are temporary and I've read that the pain comes back a hundred times worse after it wears off. The pacemaker in your stomach, well, that could cause a whole lot of problems, not to mention that you can never get an MRI again.

I'll keep you updated on what works for me but everyone is different.