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Saturday, June 9, 2012

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.

Friday, June 8, 2012

Gastroparesis in a Nutshell













Upset Tummy is Upset. =(

How People View Me ...

More vomiting

Today was rough. I have been up for 24 hours straight now. I couldn't sleep last night because I kept vomiting and now I can't sleep tonight because of vomiting. I managed to have a semi productive day while working with my brothers to try and tackle Fraternity business.

While walking my friend out to her car, I vomited in the front yard and was assaulted by lady bugs. It's really unnerving to have a bug fly in your hair while you're vomiting and not being able to look and see what it is. Lady bugs are supposed to be good luck though, right?

I've been vomiting ever since. I haven't eaten anything today, other than dinner my brother brought over. So, there's not much to purge but I keep throwing up stomach acid. My stomach is swollen and painful. Also, I keep whacking my bad knee on the toilet when I'm sick.

I have a sharp, burning pain at the top of my stomach. It feels like the pins and needles nerve pain that I have in my knee plus burning. That's the best way I can describe it. I'm wondering if seeing a neurologist might be helpful? I have nerve damage in my knee and now my stomach. I'm scared that it might be a nerve related autoimmune disease or worse. I hope it's just coincidence.

I ate one small meal today. That was all I could eat. I would be happy if I could just turn a valve to cut my stomach off so that I could sleep. I haven't had a good night's rest in a while. I'm sitting upstairs watching TV so that I don't wake my husband up.

I just feel exhausted and miserable. There has to be something the doctor can do so that I can sleep. I really need rest but I can't lay on my sides like I normally do. My stomach pains intensify when I do that (I sleep in a fetal position). At least I have a bucket beside the bed in case I don't make it in time.

Please, let me make it in time. Please?

Thursday, June 7, 2012

Pain Management?

I found this site. I wonder if I should print it out and take it to my doctor: http://www.digestivedistress.com/pain-rx

From March until Today

I was diagnosed with gastroparesis at the end of March. I hope this blog will help me keep track of everything and help me to feel better. Now, for some background.

I was hospitalized from March 28, 2012 until April 5, 2012. The doctors preformed a gastric emptying test, after preforming several blood tests, a cat scan (with dye and a barium swallow), and an MRI. All of the other tests came back normal except for elevated lipase levels and an ovarian cyst. The doctors determined that I had liver stones, which would explain the lipase levels.

My symptoms came out of nowhere. I couldn't keep food down, not even water. I was so sick and dehydrated that they admitted me to the hospital right away. I had a pretty good hospital experience until the night before I was released. I should explain.

I am a very hard stick and I have no veins left. I am usually a pretty good sport as I'm not scared of needles in any way but keep in mind that I've had a right elbow surgery, a left and right knee surgery, my appendix out, and my gallbladder out. I've also had several nerve blocks for my knee. So, with all of these surgeries comes lots of scar tissue. I don't have a lot in the way of veins anymore. When the nurse came in to change my infiltrated IV, she had to use a sonogram machine to find another vein. Then, she hit a nerve while trying to find a vein for my IV. I screamed. I've never screamed so loudly. I sobbed for hours. That had to be the worst shooting pain I've ever experienced. Remember that I had been in the hospital for a week before this, so I was bruised and sore everywhere. This event just exacerbated that. As it turns out, I found out later, I didn't even need the IV anymore. She was poking me based on the charge nurse's instructions. The charge nurse was later reprimanded by my very angry doctor. My blood pressure went down from 154/112 to 120/82 with fluids and medication. I always have high blood pressure when I'm in a lot of pain.

I was hospitalized again, overnight, on May 25th to May 26th. I received more fluids, pain and anti nausea medicine. My blood pressure was 150/111, and was still high when I left.

Well, yesterday I had my first colonoscopy. The doctor wanted to make sure that everything was normal and that I didn't have any other issues hiding like Crohn's Disease. Everything turned out to be normal. However, the anesthesia caused me to sleep all day. My blood pressure was high again but back down to 120/80 after I received fluids and medication.

One of my biggest problems is not being able to keep anything down, not even water. I can't keep my medicine down or food. I feel like I'm being conditioned not to eat because every time I do, it burns in my stomach horribly and then it feels like I've been sucker punched in the stomach. The pain is so intense and then I start throwing up. I HATE throwing up. I try not to, but this is persistent. Also, it's usually stomach acid, which irritates and burns my throat. Even the smell of food triggers it. I'm not sure what to do about it. I've been on a gluten free diet for a few months and that does help, but not enough. I eat bland, easy to digest foods. Lately, I've been on a liquids only diet because it's the only thing I can stomach. When I do manage to digest and keep down food, it stays in my stomach up to five days.

The doctor I'm seeing now is making me see a motility specialist. I'm scared that I may need a severe treatment like the pacemaker or a gastric bypass and worst case - a feeding tube. None of the "solutions" to this problem are really solutions. They are so life changing that I want to make sure before I attempt any of them. However, I am getting quite desperate. I miss food. I love cooking, it relaxes me and I can't even do that anymore. I can't play my favorite zombie games either, because I'll get motion sick. I haven't been able to leave my house (bathroom) to even go on a short car ride to the pharmacy. I feel like I'm on house arrest, almost. The antinausea meds, I'm taking phenergan AND zofran, aren't really helping. I'm on Levsin now, too. The doctor didn't want me to take Reglan because of all of the side effects.

I'm mainly just stressed out because I don't know what the future will hold for me. I feel like I've had so many tests and they always come out normal even though I know what's going on with me is far from normal. I have lost about 15 pounds and counting. My stomach is swollen and I'm consistently and constantly in pain. The pain gets overlooked by my doctors because the pain medicine they could give me would slow down digestion more and the nausea is a problem that needs to be controlled first. I hope this medicine helps.

Wednesday, July 14, 2010

The Surgeon Said I had Osteoarthritis

"SURGERY

Severe cases of osteoarthritis might need surgery to replace or repair damaged joints. Surgical options include:

* Arthroscopic surgery to trim torn and damaged cartilage
* Changing the alignment of a bone to relieve stress on the bone or joint (osteotomy)
* Surgical fusion of bones, usually in the spine (arthrodesis)
* Total or partial replacement of the damaged joint with an artificial joint (knee arthroplasty, hip arthroplasty)"

Tuesday, July 13, 2010

Surgeon Visit Summary From Today

It's just SO FRUSTRATING! The Physical Therapist said that he could not physically straighten my knee...that there is something blocking the joint; a bone chip, torn cartilage, or scar tissue. He said I have the worst knee he's ever seen. For me to dislocate my right knee cap three times in a year is unusual...he thinks there's something else going on. Symptoms include:



  • extreme pain in knee, under knee cap, behind knee
  • unable to put weight on my knee
  • my knee makes a popping/clicking sound when I try to walk on it to get around the house, or when I try to stretch it a bit to get comfy in a chair
  • my knee made a huge "POPPING" noise when I injured it in May
  • cannot straighten my leg physically, almost as if my knee is stuck

  • vomiting/nausea
  • it feels like there is something moving under my knee cap when I shift around

  • vertigo
  • knee gives out if I do try to limp around
  • muscle spasms

  • swelling
  • cannot sit for long periods of time (like at the movies) and major problems with stairs

  • thrush



The orthopedic doctor did an MRI and didn't see anything major. The doctor said I dislocated my knee cap again and tore some cartilage. However, the I did fail the physical exam when I was tested for a meniscus tear. I did some research and found that meniscus tears can be missed by an MRI. The doctor then sent me to an orthopedic surgeon, because he said that MRI's don't always catch EVERYTHING. The surgeon then proceeded to call me, "kiddo" throughout the appointment and was very condescending and rude. He wouldn't listen to me at all and told me that if I wanted to get a second opinion, it would be useless because he was right. He didn't fix me, he said I didn't need surgery. He injected me with cortisone again...specifically not asking first nor telling me what he was going to do. He was extremely condescending and rude. He told me not to seek a second opinion because I would get another doctor cutting into my knee when I didn't need it. He just really pissed me off.


The cortisone made it worse. >.< class="text_exposed_show">knee surgery because that could possibly make it worse but THERE IS SOMETHING WRONG and it's not in my head. I am pretty sure I have a tear and my doctor is too - that's why he sent me to a surgeon. The guy didn't even order more tests...he just referred to a MRI taken in June.




Also, this is the third time I've dislocated my knee and this feels DRASTICALLY different from the other two times. I have kept it elevated, iced, and rested as much as possible. When this happened before, I could put weight on it and get around with a brace. It never hurt to the point where I wanted to vomit. The doctor did give me a cortisone injection two weeks ago...and it helped the pain some but now it's back with a vengeance. I am currently using a brace for a torn ACL (it has a hinge to keep from straightening my leg) and crutches to get around. The brace only helps when I try and crutch around. I keep my leg elevated at work too. Nothing seems to be helping. The pain medicine takes the edge off a little but I'm still in *a lot* of pain with the pain medicine. I'm not fishing for drugs - I WANT THE PROBLEM FIXED.



I just don't want to do physical therapy for four weeks if it's not going to improve my leg but make it worse. Tuesday made it SO much worse. My leg is so swollen, almost to the size of a watermelon. This is the second doctor I've been to and Emory is supposed to be great. I really want to take fall classes, so if I have to have surgery - I would rather just schedule it and do it as to not miss class.. I just don't know what to do anymore. I can't eat, I'm having trouble sleeping, and I can't get comfy at work. It's just so frustrating.



Enclosed is the link I found about tears:



http://www.yorkshirekneeclinic.co.uk/cartilage-tear.htm



Thursday, April 8, 2010

Update

http://www.youtube.com/watch?v=-loCcuu6mRQ&feature=related

I have had that song stuck in my head for the past few days. I decided to blog about my lung infection - which is something that I have been dealing with chronically for the past six months. No one knows what it is and antibiotics make it worse. Last week, I went in for a bronchoscopy, which is a procedure that I have never had done before. The doctor found "goop" in my lungs as well as irritation in my lungs and nose. He took samples of my lung tissue and of the goop. I find out the results tomorrow. I can't say that I'm not a little terrified. I keep wondering if it is something horrible that can't be cured. It feels like I have pneumonia. It's really hard to breathe, there is a lot of pressure on my chest, and I keep coughing. I hope for the best.