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.

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! =)

The Past Three Days Update & Natural Remedies for GP

Just a quick note from GASTROPARESIS FACEBOOK PAGE - Please post a message at the end of Dr. Oz's blog page to help encourage him to do an episode on Gastroparesis. The more people we can get to post comments requesting help for GP the more likely we are to get through to HIM.:



January 6, 2013

I had two cups of ham soup and tried to take most of the veggies out of it since they're hard for me to digest. I also had a small bowl of chocolate ice cream that I couldn't finish. I have been craving something sweet for a while, so that was my reward. I woke up feeling nauseated and weak. Also, I felt dizzy. I had to hold on to the walls for balance. I was also breaking out into a cold sweat, so the shower wasn't an option. I'd just get colder coming out of the shower. My stomach muscles and diaphragm are really sore, like I've been doing intense workouts, but it's really from vomiting. My neighbor told me that I look, "trim" which means that I've lost more weight. My face has thinned out a great deal but my stomach looks swollen and I look pregnant after I eat. I feel miserable. I also feel guilty about feeling whiny, especially after reading other people's GP stories.

I can't cook or clean because the smells drive me out of the kitchen, especially after someone fries something. My bedroom is right off of the kitchen, and my sense of smell has heightened. So, I feel useless around the house. The bad thing is that I am starving but I don't dare eat a lot or at all, most days. I've got my bucket beside the bed, just in case I wake up vomiting.


January 7, 2013

I applied to be in a trial pool for a Gastroparesis study in North Carolina. I guess I'll wait and see if I'm picked. I also received Quease Ease, Preggie Pops, Tummy Drops, and Nature Made Sleep Aid in the mail today. They were recommended to me by another GP friend to help cut down the nausea. Most of those are used for morning sickness and for chemo patients. I'm going to try them out for a week and then do a write up on what I think of each product.


Quease Ease (nausea relief)

Tummy Drops (bloating, nausea, cramps, and gluten free)

Three Lolies Preggie Pops (nausea, morning sickness, and will help a dry mouth)

Nature Made Sleep Aid (a natural way to help you sleep, because if you're like me, it's hard to sleep with stomach spasms and vomiting)

Tummy Drops - ate one at 8:00pm and it tasted like mint, which it should because it's made of spearmint. It doesn't taste bad, at all. I need to give it some more time before I can tell if it helps with bloating or not. It did help subside my nausea though.

Preggie Pops - ate one at 8:20pm. It tasted like sour raspberry and is supposed to help nausea. I was still a bit nauseated after eating it and it took at least 30 minutes to start helping. However, the nausea became more manageable but didn't disappear all of the way. I still have six days to go.

Nature Made Sleep Aid - took one at bedtime. It's supposed to calm your mind and help with anxiety so that you can sleep. I finally got to sleep, without waking up to vomit,after I took it.

PSIBANDS ACUPRESSURE WRIST BRACELETS - The stylish way to relieve your morning sickness, nausea, vomiting and general queasiness. PsiBands are based on the traditional Chinese medicine technique of acupressure to naturally relieve stomach upsets. I haven't actually tried these but they were highly recommended.



January 8, 2013

The Nature Made Sleeping Aid worked for me last night and finally knocked me out. The preggie pops taste wonderful and it is helping the nausea today along with the tummy drops. I haven't seen any change in my bloating or swollen stomach though, it still looks like I'm pregnant. I have not yet tried Quease Ease but I'm going to try it in the morning when my nausea is at its worst. I need to order more Preggie Pops since I only bought a sample package to see if they worked first. Right now, though, I have a severe headache. It's not a migraine or sinus headache. I think it's from dehydration. I'm rotating between juice and water. I had a little bit of caffeine, just in case it was caffeine headache. I don't know if it's a side effect from one of the medications I'm on (nothing's really changed there a part from all of the stuff I've just ordered for nausea) or dehydration. I fear it's the latter.

Today I ate a cup of soup, goat cheese with a few crackers (so I could take my medicine that requires you to eat), and I had a small taste of peanut brittle. I know, I know. I shouldn't have had that last part. But at the rate I've been going this week, it doesn't matter what I eat because it all comes back up.

I started a daily planner with the times that I eat, what I eat, when I take my medications, and when I get sick. That way, I can just hand it to the Mayo Doctor and it will help me find the triggers, hopefully.

Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.