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Monday, February 25, 2013

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!

Tuesday, February 12, 2013

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.

Saturday, February 9, 2013

Gut Pain Management: Visceral pain and Gastroparesis

This was shared with me by my friend Freda. I thought it was important enough to put into my blog. The link to the article can be found HERE.

"Gut pain management: Visceral pain and gastroparesis

Excerpts from the presentation by: Robert Twillman, Ph.D. who spoke at the GPDA and ANMS organized consensus meeting on the Treatment of Gastroparesis, held in September 2004 at the Kahler Grand Hotel, Rochester, MN.

Robert Twillman PhD

Pain Management Program Director

University of Kansas Hospital

Clinical Associate Professor of Psychiatry and Behavioral Sciences

University of Kansas School of Medicine

Historically, pain has been a neglected symptom in patients with gastroparesis, even though (and perhaps because) it is often the most problematic to manage. In the most extreme cases, pain can dominate the picture, resulting in considerable suffering and utilization of health care resources. The problem is often compounded by the reluctance of many physicians to recognize the pain as “real”, in part due to the lack of overt evidence of significant inflammation or injury to the stomach. This may lead to dismissal of the pain as a manifestation of “narcotic-seeking behaviour” or to an attribution of purely psychological factors as the root cause of the pain. The end result is often a desperate patient bereft of a long-term relationship with a caring physician.

Much of this problem stems from a complete lack of knowledge about the causes of pain in gastroparesis. There are no experimental studies or clinical trials on this subject. Therefore the approach to treatment is both arbitrary, subject to the biases of the treating physician, and empirical, without any biological rationale to guide therapy.

The approach to pain in these patients begins with an empathetic understanding and recognition that the pain is real. Such an understanding and recognition will usually relieve anxiety in patients and their families, and will promote a trusting relationship between physician and patient.

Possible Causes and Nature of the Pain

Looking through the literature, the problem of chronic pain in gastroparesis is estimated to affect anywhere between 50 and 90 percent of patients. The cause of this pain is not well known. Neuropathic pain, pain generated by damaged or inflamed nerves, is thought to be the primary cause, and is one of the most challenging types of pain to manage. Neuropathic pain is common in idiopathic, as well as in diabetic gastroparetic patients. This type of visceral (abdominal) pain is often described as diffuse, dull, achy and crampy. (Writer's note: Other types of pain described by gastroparetic sufferers may be sharp and localized in areas over the abdomen. The nature of this pain may be more related to muscular spasms within the stomach or small intestine, or related to trapped gas.)

The sensory wiring of the gastrointestinal tract is very complex and bound up with the central nervous system, tying it to emotions and behaviors. This is why pain is a mind, body and spirit phenomenon requiring more than just medications to help control the problem.

We know that sensory nerves within the gut are sensitive to stretching and distention; as well, chronic pain can cause a hypersensitization within the central nervous system to the painful sensations. Also, any regional inflammation, say in the stomach or esophagus, becomes hyperactive, working overtime relaying messages to the brain communicating “pain”. Further compounding the problem, many patients with gastroparesis will describe an acute pain occurring soon after eating, layered on top of their chronic pain. (This acute, sharp pain may be related to spasms occurring in the upper portion of the stomach due to its failure to relax and “accommodate” the just-eaten food. As well, a sluggish emptying of the gall bladder seems to be tied up with poor emptying of the stomach, coupled with uncoordinated muscular action by the small intestine. This may all add to the pain experienced soon after eating).

Where to Begin?

Psychological interventions are helpful measures and should be considered as a part of the pain-management regimen for every patient presenting with gastroparesis-related pain. These interventions avoid the added risks posed by pharmacotherapy, and help promote a sense of control on the part of the individual. Simple techniques such as deep relaxation, cognitive restructuring, and distraction may be helpful, and can easily be taught by most health care providers. Other techniques such as acupuncture, hypnosis, biofeedback require a greater level of expertise on the part of the health care practitioner, but should be utilized whenever available.

The primary health care provider needs to be well versed in the pharmacology of analgesic drugs including narcotics. Even though a pain specialist may be involved in their care, patients with gastroparesis-related pain often rely on their primary physician to provide relief during flare-ups.

(For those who live in small towns and rural areas, finding help for more severe gastroparesis related-pain may be difficult. Try consulting with a cancer pain specialist or palliative care doctor in your town. They can guide you through logical choices for your pain care).

What are the Drug Choices?

A wide variety of drugs are available from the traditional analgesic (pain relief) medications to a number of other unrelated pharmacological groups employed for pain management.

Beginning pharmacological therapy for abdominal pain management should start with the non-steroidal anti-inflammatory (NSAID) medications. Many of these popular drugs are available over the counter while others require a prescription. Some examples are:

diclofenac (Voltaren®, Cataflam®)

diflunisal (Dolobid®)

ibuprofen (Motrin®, Advil®)

indomethacin (Indocin®)

ketoprofen (Orudis®, Oruvail®)

ketorolac (Toradol®)

naproxen (Naprosyn®, Alleve®)

piroxicam (Feldene®)

These medications can be helpful but have the potential to cause stomach ulcers and bleeding. To help counter this problem, the use of stomach acid-suppressing medications may be useful. The newer agents, the COX2 inhibitors, were favored since they don't irritate the stomach lining, yet recently some have been pulled from the market due to an increased risk of strokes and heart attacks.

Antispasmodics may have particular application in treating painful abdominal cramps or sharp, painful spasms occurring soon after eating, but their use is limited in gastroparesis. Antispasmodics have the effect of further slowing down the digestive tract. While not dismissing them outright, some formulations come in rapid and short-acting preparations. Levsin/SL®, for example, can be chewed or placed under the tongue and allowed to dissolve.

The tricyclic anti-depressants (TCA) drugs have become one of the mainstays for treating chronic abdominal pain. Though the FDA has never officially approved them for this application, they have been well researched to establish their effectiveness in pain management. TCAs work best for the burning/searing type of pain common to neuropathic pain syndromes. The TCA drug most studied and prescribed most commonly is amitriptyline (Elavil®). Dosages are started at a very low level, lower than used for treating depression, and then slowly increased. It may take several weeks before benefits of pain reduction are experienced. Low dosages are also important because TCAs can slow the emptying of the stomach and intestines. Other examples of TCAs:

Desipramine (Norpramin®)

Doxepin (Sinequan®)

Imipramine (Tofranil®)

Nortriptyline (Aventyl®, Pamelor®)

Unfortunately, TCAs can cause bothersome side-effects of gastrointestinal distress. Nortriptyline may be the least likely to cause these unwanted problems. Working closely with your doctor and carefully adjusting dosages is essential.

The selective serotonin reuptake inhibitors (SSRIs) have not been clearly proven to be effective tools against neuropathic pain.

Finally, a new category of antidepressant drugs the selective serotonin and norepinephrine reuptake inhibitors (SSNRIs) are showing promise in treating neuropathic pain. Venlafaxine (Effexor) and duloxetine (Cymbalta) are two agents being used. The FDA has recently approved Duloxetine for its use in treating diabetic neuropathic pain.

Anticonvulsant/anti-epileptic drugs have also demonstrated their effectiveness in clinical trials against burning/searing pain of neuropathies. A wide selection of these drugs is also available and can be used in combination with the TCAs to increase overall potency. Examples are:

carbamazepine (Tegratol®)

clonazepam (Klonopin®),

gabapentin (Neurontin®)

Gabapentin (Neurontin®) has become very popular, primarily due to its superior safety profile compared to the other anticonvulsant medications. Gabapentin has relatively few side effects and is well tolerated especially if the dosage is gradually advanced in increasing increments. It has few, if any, drug interactions. It is expensive, but it does not require routine monitoring of blood levels and liver functions tests as is required for Tegratol® surveillance.

Clonidine (Catapres®), an anti-hypertension drug, has also been shown to work for neuropathic pain. Its role, however, may be more limited in treating abdominal pain syndromes since its effectiveness has only been demonstrated through intrathecal administration, and less so transdermally or with orally administered preparations.

The last category of drugs to discuss is the narcotic drugs or “opioids”. The best known is Morphine. Surprisingly, narcotics have not shown to be that effective for neuropathic abdominal pain like that of gastroparesis.

There is an expansive variety of narcotic, and synthetic narcotic drugs available to the physician in treating his patients. Many of these drugs have an undesirable effect of slowing down the gastrointestinal tract thereby worsening the other symptoms of gastroparesis. It is possible to get around these problems of narcotic drug- induced, slowed-gut motility and still provide good pain relief.

Many patients with mild-to-moderate pain symptoms can be managed without graduation to regular narcotic use. However, there remains the individual with severe pain who needs more effective pain control. Even though opioids may not be extremely effective in this condition (in keeping with the possible neuropathic nature of the pain), they are inevitably used for this category of patient, and may have some utility.

This creates at least two major issues: first, the possibility of narcotic dependence and second, the potential risk of slowing gastrointestinal motility and further contributing to worsening of symptoms.

Physical dependence resulting from the chronic use of narcotics to treat pain is an expected outcome, and patients should be cautioned not to discontinue their use without a tapering schedule. Addiction is a much rarer phenomenon, especially in patients without a history of substance abuse. Doctors and patients should understand the distinctions between physical dependence and addiction, and are referred to definitions published by the American Pain Society, American Society of Addiction Medicine, and American Academy of Pain Medicine.

With respect to the problem of constipation, the scientific literature suggests that methadone, fentanyl (Duragesic), and Buprenorphine (Temgesic, Subutex) may be narcotics that produce less constipation than other drugs.

Another drug (a derivative of codeine) called tramadol (Ultram®), may have some promise as a constipation-sparing analgesic for patients with moderate pain.

Additionally, there are a number of studies in the literature looking at treating constipation by using narcotic-blocking agents. These drugs help to block the side effects of narcotics such as constipation, while not diminishing the pain-reducing effects of the prescribed narcotic.

Examples of these narcotic-blocking drugs used along with narcotics are:

naloxone (Narcan®),

Methylnaltrexone (MNTX), and


Taken at very low doses, and taken orally, they can reverse the negative impact of the narcotic on the GI tract.

What is intrathecal?

What are intrathecal medication delivery systems?

The spinal cord is protected by a tissue covering.

The intrathecal area is the space between this tissue covering and the spinal cord.

Medications can be delivered into this space and bathe the spine with various drugs.

For more severe abdominal pain syndromes, implantable devices have been devised to permit regular drug delivery through a system composed of two implantable components: an infusion pump and an intrathecal catheter. The pump is placed abdominally into a pocket created underneath the skin, while the catheter tip is inserted into the intrathecal space of the spine, then tunneled under the skin and brought to the connection site on the pump. Medication can be delivered through the pump at constant or variable flow rates.

Medtronic manufactures intrathecal drug delivery systems.

Many different types of medications can be infused into the intrathecal space for pain management.

The science of pain control is looking even farther afield to agents like ketamine, a short-acting, general anaesthetic; it can be delivered intra-nasally via a nose spray. Ketamine provides a sense of euphoria and emotional detachment from the pain. Finally, even drugs, such as memantine (Namenda), used for treating Alzheimer's disease are being studied for use in neuropathic pain relief.

Celiac plexus nerve block

Another method used to control chronic abdominal pain is by means of chemically damaging a collection of nerves, called the “celiac plexus”. This is the main nerve branch which communicates pain from the abdomen. Generally, a trial block with a short acting and reversible agent is used before the physician proceeds with permanently destroying the celiac nerve bundle though injection. Complications can occur, so this method is reserved for after all other medical approaches have failed. Published reports show the majority of patients have a good response of pain reduction.


On the Horizon:

In Canada, the federal government has recently approved a new cannabis (marijuana)- based drug called Satives. Developed by GW Pharmaceuticals and Bayer, the drug is conveniently administered via a mouth spray. Canada is the first country in the world to approve the drug. Approved for use in treating neuropathic pain of MS, it will help fill the need for more neuropathic pain therapies.

Ocean “cone snails” have a neuro-toxic sting that is providing a new chemical family for enthusiastic research into more effective pain-control medications. Ziconotide, a synthetic form of the cone snail toxin has been recommended for approval by the FDA. Intrathecally administered ziconotide produces pain reduction and has an advantage over intrathecal morphine in that there is no development of tolerance after prolonged use.

Take-home Message:

Often multiple drug therapies may be necessary for controlling more severe pain. Combinations of medications such as the tricyclic antidepressants and anticonvulsants are effective; and occasionally, some individuals will also require narcotic therapy added to this regimen. If pain management fails with these steps, then treatments with implantable systems, such as a spinal cord simulator, or intrathecal pump should then be considered.

The constipating effect, and the slowing of gastric emptying caused by narcotics can be counteracted with low doses of narcotic-blocking agents. This does not diminish the pain- reducing action of the prescribed narcotic.

Regaining Control

Pain and the symptoms of gastroparesis can take their toll on the mind, body and soul greatly diminishing quality of life. Finding effective therapies that help subdue symptoms makes everyday coping much easier. Connecting with an empathetic physician and psychologist/psychiatrist to work with you is your best option.

Just trying to keep everything in balance and manageable is a daily struggle. Here are some tips:

Connect with a supportive community.

Find spiritual strength through meditation or prayer.

You are not to blame for your pain.

Stress and emotions just modify your experience of pain, they do not cause the pain.

Seek professional help.

Good pain-management is your right. Find a doctor willing to work with you.

Have an advocate willing to go with you to your medical appointments.

Keep a journal.

Make connections with nature and/or pets."

Friday, February 8, 2013

Mayo Clinic - Day Five. Follow up Visit with the Doctor

I met with the doctor today at Mayo to go over all of my test results from this week of testing.

We started off talking about my lab work. My labs were normal, except for my enzymes. The number was 108 and normal is around 40. That kind of bothers me because my liver enzymes were also really high in the hospital, in the 440s to 500s. He is going to recheck my labs in three months to rule out chronic liver disease, which sounds a bit scary. My white blood cell count was up, at 12.8. I don't have any explanation for that except for the throat infection I vomited myself into last week.

My 48 hour BRAVO TEST was positive. The test came back showing three different occasions for heartburn. The regurgitation I had did not correspond with reflux events on the Bravo meter device.

I want to address the heartburn thing. I know what heartburn feels like and I swear that I did NOT feel the heartburn while doing the Bravo test. I have been vomiting up stomach acid, but I thought that was because there was nothing left on my stomach. Am I just so used to the acid reflux that I can't tell when it's occurring now?

My esophagus looked normal and there wasn't any damage. I'm not sure how that happened because it was so swollen and sore last week. I still have issues swallowing and I have the bravo capsule attached to my esophagus until it falls off.

I have to manage this like GERD. I've tried Protonix, Pepcid, Prevacid, Prilosec, and Dexilant in the past to control acid reflux. So, the doctor called in some ACIPHEX to help control my symptoms. He told me to try this for three months. He also told me to learn DIAPHRAGMATIC DEEP BREATHING. Dr. Bouras said that will help me to help control the vomiting. I have to come back to the Mayo Clinic to meet with behavioral specialists to learn how to this technique but it will have to be approved by my insurance before I can schedule the appointment. But, the deep breathing will help me hold the food down.

If the medication does NOT work, then he will have to do surgery. He recommended a NISSEN FUNDOPLICATION.

The doctor also cleared me to start back on BENTYL. This is great news because my stomach spasms hurt SO much! This will help them subside. He did caution me to be careful about these types of medication because they can make gastric emptying even slower.

If I'm still having issues three months from now on the new PPI and with the deep breathing, he also mentioned doing a Sleuth Study which is a reflux study that isn't just about acid, but any kind of reflux. I'm sorry that I don't have a link for you but I can't find anything on the Internet about it. He also mentioned the Nissen, as I mentioned before. That would make it impossible for me to vomit and could create issues for me swallowing.

I also have severe constipation. Nothing goes down and everything comes back up so he suggested Milk of Magnesium at night. I've been doing that but I guess I'll up the dosage. He said that in some cases, severe constipation can lead to upper GI motility issues. I'm to take 2 - 4 tablespoons of Magnesium at bedtime and avoid any medications that could cause constipation.

He may eventually do rectal testing on me. Man, that sounds like fun! Kidding. Anyway, he said that even though your colon could be normal (mine was via a colonoscopy) that you can still have rectal issues. There are tests to see if the muscles are functioning properly and he would also check for any possible blockages. He also mentioned doing another test called the PELVIC FLOOR TEST. I had never heard of such a thing. It's a group of muscles that control your bladder and bowel movements and this test makes sure that group of muscles work properly.

I asked him if there was anything else I could take for the nausea because the Zofran is hit or miss and Phenergan, well, doesn't last that long. I think I'm building up a tolerance. he said that I could take SCOPOLAMINE patches, which you put behind your ear and wear for three days but they have the potential to make you sleepy. So, I'll ask my doctor about those when I get home. I am going to straight up ask for pain patches too until the spasms are under control.

So, I still have motility issues. I'm meeting with a new PCP this week as well so that I can actually get more refills on Phenergan (more than 2 refills at a time), ask about the patch, and talk to him about everything that's been going on. I know he can't help with GP or motility issues, but he can help me with the stress and coping with such things. I had been seeing another doctor as my PCP but he's been at the practice less and less, having his PA's cover it instead and some of them really aren't that bright. If I am paying for a visit and I haven't slept in three days because of vomiting - don't turn me away with a prescription for 12 phenergan tablets and a pat on the head. That was the last straw for me, I think. I'm in the process of getting ALL of my medical records together for the new doctor. He might be a bit overwhelmed. My file looks like 100 Stephen King novels packed into one.

TRDL; my liver enzymes are high and need to be tested in three months to rule out chronic liver disease. Severe acid reflux is causing me to keep vomiting everything up. The doctor gave me medicine and if it doesn't work, along with deep breathing, I will need to have a stomach operation wherein, basically, they wrap my stomach around itself as well as other testing.

Thursday, February 7, 2013

Mayo Clinic - Day Four. Bravo Test

Today was day two of my Bravo pH test. I have to keep a log of all of my pain, nausea, vomiting, food intake, etc. It is very similar to the Smart Pill test that I had earlier last year. When they went in for my endoscope yesterday, the doctor attached a small capsule to my esophagus. This capsule measures the acid and reflux that my body produces to determine whether or not I really do have acid reflux. When the capsule is finished after three days, it falls off.

This is the Bravo pH log that they gave me to keep track of everything:

This is the receiver that they gave me. I have to wear it for the next two days:

The test is a bit miserable because I can only drink water in between meals. I can't sip it, I have to actually drink it at once. I can only have pedalyte, soda, and other things like that to drink with my meals. I have to eat normally, like I would if I didn't have Gastroparesis which is a bit hard for me. I am scared I am going to vomit and vomit this capsule loose. If that happens, I have to call the doctor at Mayo and let him know.

I go back to consult with Dr. Bouras before I leave tomorrow. I'm a bit nervous as to what he'll have to say. I was kind of hoping they would hospitalize me to give me fluids because I'm still very dehydrated and sick. I guess I'll wait and see what he says and waiting is always the hardest part.

Wednesday, February 6, 2013

Mayo Clinic - Day Three. EKG & Endoscope

I reported for my 10:35am appointment this morning for my EKG. The appointment was in Davis Building 2 East.

I didn't have very long to wait. As soon as I sat down, the nurse appeared and called about four of us back. The nurse led me to a dressing room in the back and gave me a gown to change into to. She told me to leave my stuff in my dressing room and to take the key with me. Then, I went around the corner and laid on the table in the room while my EKG was done. The tech doing my EKG talked to me about the Falcons and how disappointed he was that the Ravens won the super bowl. We started talking about UGA games, since I have to deal with the drunk people after the games. He was telling me how horrible the UGA and Florida games were. The other tech behind the curtain working on someone else was also commenting on our conversation and chiming in on what he felt strongly about. They told me that I was their favorite patient for the day. That made me smile. I think they were amused that I love football.

So, the EKG was normal and I was released. My next appointment is at 1:30pm today for my endoscope and my Bravo test. I'm going to take a nap until then.

I started a new page last night based on humor. When I went to sleep last night, it only have fifteen likes. Now, it has over 100. The page is LAUGHTER THROUGH GP. I figured that Gastroparesis needed a little humor to cheer members up and it was a niche that hasn't been carved out yet. =)

At 1:30pm I reported to the patient registration desk in the Mayo building to register for my endoscope.

The receptionist sent me up to Mayo 5 North to check in for my procedure.

Before I did anything else, I stopped and looked at the views from the fifth floor. They were amazing, so I took some pictures of that as well.

I sat down and went over my medication list. I crossed a bunch out that the doctor took me off of and answered a questionaire about past surgeries and medical issues. I sat with papers in hand waiting for the nurse to call me back.

The nurse called me back and had me put on a gown. The attached me to a blood pressure cuff (my BP was high, no changes there), and got my IV in my right hand on the first try. She asked me a lot of questions and then I met the doctor. He was nice. Then, I met the anesthesiologist who was nice as well. They didn't waste any time and they wheeled me back in my bed for the endoscope. They had me lay on my side and bite down on a green plastic ring. The anesthesiologist pushed the drugs to make me sleep. I remember looking at the screen and then waking up in recovery. I cracked jokes with the nurse after I woke up.

The nurse told me that I would feel like there's something stuck in my throat because of the BRAVO TEST. The capsule attached to my esophagus will fall away by Friday. I came back to the hotel, ate a bit, and then went to sleep. I'm about to go back to sleep now because I still feel exhausted.

Tuesday, February 5, 2013

Mayo Clinic - Day Two. Gastric Emptying Test

Today was the long dreaded, gastric emptying test. We arrived at Mayo at 7:15am to check in the registration desk in the Mayo Building. We were supposed to meet with a financial adviser but the person who checked me sent both my husband and myself up to the second floor, back to radiology.

After we got back up to Mayo 2 South, I checked in at the front desk for my 8:00am appointment. They told me to have a seat and that someone would be with me shortly. I sat down with my husband and put my head on his shoulder. I promptly fell asleep. Then, a tech comes out and calls four names, mine being one of the four. He told us to follow him to nuclear medicine. As we went down the long hallway, I passed sub-waiting room B that I had to wait in yesterday. I made it to the end of the hall and took a left until I got to nuclear medicine. He ushered all four of us in and sat us each separately down in different "rooms." I say rooms but they were covered by curtains. One of the techs came up to me and presented me with the radioactive eggs over toast.

They gave us whole milk to wash it all down with. I called one of the techs over because halfway through the eggs, I became full. I asked how much of the meal we had to eat in order for the test to work. She said for me to ignore the toast and eat the eggs, that they were the most important part. So, I tried to eat as much as I could, and I did finish the eggs but left a third of the toast unfinished. I washed it down with the milk because the food kept getting caught in my throat, much like the barium tablet did yesterday.

After I ate the meal, I stood in front of the gastric scanner and took my first picture. The tech had me stand there for two minutes while the picture was being recorded. He handed me a piece of paper that said I had to repeat the scanning at 9:10am, 10:10am, and 12:10pm. The piece of paper had me circle whether or not I had a bowel movement in between scannings. Of course, I didn't have any bowel movements.

I went back to the front desk and checked in for the 9:10am scan. The receptionist sent me back to nuclear medicine and I made my way back there. I stood in front of the scanner and the food was still sitting in my stomach an hour after I had eaten the eggs. I stood there for two minutes while the tech captured another picture.

I waited until 10:00am and checked in with the front desk. On the way back to nuclear medicine, I vomited in the bathroom. I only threw up some of the eggs and toast. Then, I began to get nervous. I remember the doctor telling me in the hospital that if I threw up, the would have to start the test all over again. I made it back to nuclear medicine and told the tech what happened. He positioned me in front of the gastric scanner and started my two minute picture capture. He analyzed the results in the computer in the other room and talked to a colleague. He said that I had only thrown up 10% of the meal and that we still had enough to finish the test. He said that he was going to inform the doctor about the vomiting.

On a side note, they wouldn't let me take any kind of nausea medicine or pain medicine for this test because the doctor didn't want my medicine to skew the results of the test.

The next image was going to be at 12:10pm. I found a chair and got out my kindle and headphones. I managed to curl up in that tiny chair, in a ball, and get some sleep. Which is good, because the gastric spasms started about 20 minutes after I ate the radioactive meal and it was either try and sleep or cry because of the pain. I slept until my next picture was due.

At 12:00pm, I checked in with the front desk and went back to nuclear medicine. I had my final gastric scan done and I could still see all of the food in my stomach. It didn't move hardly at all. I gave them the sheet that said I didn't have a bowel movement between the different image captures.

Now, I'm exhausted. I think I may try and nap for a bit. My stomach is swollen and the spasms are still happening. I'll be happy when the rest of this toast finally comes up so that I don't have to deal with the pain anymore.

Tomorrow, I have an EKG and a scope. Wish me luck!

Monday, February 4, 2013

Mayo Clinic - Day One. Bloodwork & Barium Swallow

I woke up bright and early this morning around 5am - and by woke up, I mean, just stayed awake. I got up and made it to Mayo for my 6:30am blood draw.

The doctor wanted to check my CORTISOL LEVELS as well as do a complete blood panel - CBC, liver enzymes, etc.

When I walked in, I checked in at the desk in the front after reporting to Davis Building 1 East. I gave them my name and birthday. Then, I sat in a waiting room with five doors. Each door had a lab tech come to it and call people back. It was very efficient. This is what I saw in the waiting room.

The lab tech called my name. She was a small, Asian lady who was extremely nice. She sat me down in the blood drawing chair that we're all familiar with. She looked at my arms and applied the tourniquet. She thumped my veins a few times, clucking and telling me that I didn't have anything to really work with. I've been REALLY dehydrated but yesterday, I sucked down about half a case of Dasani with Pedalyte powder to hydrate myself. It wasn't enough. She went into the first vein and got a bit of blood out for the tube for the CBC, but almost let the tube clot because she didn't shake it slowly back and forth the way I was taught to do in high school. Mrs. Gray would be proud to know that I still remember how to do that. And, she kept digging the needle in and out of the vein, which resulted in that vein blowing. That was in my upper right arm.

Next, she tried my left hand. She pulled the needle back too suddenly while trying to change vials and blew that vein too. Then, she tried my upper left arm. That was probably the worst vein blow I've ever felt. It still hurts. She managed to blow that one pretty good without even really getting a good blood return in the butterfly needle that she used. The Mayo Clinic doesn't put bandaids on the site. Instead, the put gauze over it and then wrap it with gauze. After the tech blew another vein, she called a colleague over.

The other tech scanned my arms and I finally just presented my wrist to her. She told me that she didn't like to use the wrists because they were usually painful places. At this point, I knew my wrist would work and told her that I was used to it because that was the go to place for my doctor. She listened to me, got a butterfly and got blood on the first try. Instead of messing up the site by switching vials, she didn't want to lose the vein so she took blood into two syringes. She then took the syringes and put them into each different tube for the blood panel. After that, I was free to make my way upstairs to Radiology.

This is my left arm:

This is the blown vein in my right arm but it doesn't hurt nearly as badly as my left arm:

I then left the lab to go to the Mayo building and find Mayo 2 South for Radiology.

I checked in at the desk, noticing that they had a policy that you can't check in more than 30 minutes ahead of your appointment.

The waiting area was closed off.

After I checked it, I was told to go through the double doors and down the hallway until I got to the substation waiting area. I was at another, smaller check in area. The nurse gave me a bag and a dressing gown. The dressing gowns are new, so she had to give me a demonstration on how to wear them. They have three arm holes. You put the tag in the back and put your arm through the two holes, and then you wrap the gown around you, putting your arm through the final hole. There were no ties or anything like that. I had a seat in another waiting room, waiting room B. Unfortunately, it was packed so I wasn't able to take a picture. I didn't want to violate anyone's privacy.

After sitting there for about ten minutes, a tech called my name along with three others. He walked us down the hall and swung a left. He led us to an even smaller waiting room and told us that the techs would come and call us soon. I sat in the cramped waiting room. An older man was kind enough to move over on the bench so that I would have a place to sit. They called about three people before it was my turn.

The tech took me back to this cold room and told me to have a seat and that the doctor would be with me shortly. My appointment was at 7:45am and I noticed it was 8:18am while I was waiting for the doctor. I will say that Mayo is very efficient and the staff I have encountered so far has been extremely nice.

The x-ray tech was pouring barium into a cup and also placed a cup of water next to that. When I saw the barium I was a bit scared. The x-rays I've had in the past, I was always told to drink two big things of barium before I took pictures. However, this test was different. I had an emesis bag, just in case. It's better to be safe than sorry and I tend to vomit up barium.

The doctor came and and then the test was started. I took in this enclosed space, with the x-ray machine in front of me and the screen to the right of me. I could see my skeleton and organs in the screen. It was extremely neat! The doctor gave me the cup of barium and told me to take three big gulps. As I did, he took screen shots at the screen to my right so that I could see what was happening. I got to watch myself swallow the barium, which distracted me from how uneasy my stomach was becoming.

He then told me to turn facing left, facing the wall. I drank a few more gulps of barium as he took pictures. The doctor told me to stand with my back against the wall of the machine. Then, the x-ray machine I was halfway inside, standing in, started to rotate and I was on my back. I was told to lay on my stomach (which is hard for me to do because it makes me even more ill) and was told to cross my left leg over my right, making a triangle. I had my right arm down by my side and my left arm up by my head holding the cup of barium with a straw. I had to drink it while the doctor took pictures that way, and he instructed me to turn on my left and right sides, also while taking pictures.

Then, I was instructed to lay on my back again and the machine started to straighten back up and I was standing again. The tech gave me a cup of water and a barium pill. The doctor instructed me to swallow the pill but it got stuck halfway down, like everything has been lately because my esophagus is burnt and swollen.

He said, "interesting."

He instructed me to drink more water and finally it went down as he was taking pictures. Then, he informed me that my test was done.

Honestly, that's the best barium test I've ever taken because I didn't have to down two huge things of barium. I barely had a cupful. And, that's all I really need. It's fighting to come back up, even now.

That was the end of day one at Mayo. Tomorrow, I get to look forward to the gastric emptying test at 8am. Four hours of pictures after I eat radioactive eggs. That's the test that I'm scared of because if I get sick, I have to repeat it all over again.

I will try and take more pictures and let you know what I think of tomorrow.

As for today, I am very pleased with the treatment I received today. My only complaint is that I have one blown vein in my upper left arm that really hurts. She blew it good. It's going to bruise something horrible. I just hope for my scope that they'll be able to find an IV site. I'm going to be chugging Pedalyte from here until Wednesday. I hope it hydrates me enough for that.

Other than the blown veins, everyone here has been extremely nice and helpful. My wait times weren't long at all. I am very happy that I didn't have to swallow more barium than needed and the doctors here are truly the best at what they do. However, they don't just treat me like a diagnosis, they treat me like a person. I really do appreciate that.

The lab tech this morning told her colleague that I was a fantastic patient because I didn't flinch once while they were poking me. =)

Sunday, February 3, 2013

Sunday Night - Before all of the Testing at Mayo Begins

G-PACT wrote something today that I thought was worth putting into my blog:

"We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are.

You don’t owe it to your friends to be the “strong” one. Just because you have always been the good listener and the shoulder to cry on, doesn’t mean you have to maintain that role now when you need a good listener and a shoulder to cry on.

Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain.

They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

To ask for help is strength.

To admit you don’t know is strength.

To tell the truth about what’s happening is strength.

To be imperfect and to trust that imperfect people will love you despite those imperfections (albeit imperfectly) is strength.

To let the people you love see how you really feel – without trying to hide or stage manage their perception of you – is strength."

--The lie of strength, Captain Awkward

The link can be found HERE.

I want to ask all of my friends to please be patient with me in the next few weeks. I'm going through an entire week of testing at Mayo this week and I'm really nervous. I feel so awful that I wouldn't be surprised if I cried a lot more than usual. All of these procedures may leave me broken and exhausted by Friday. I can't eat after 6pm and I can't have anymore water after midnight, tonight.

Tomorrow, I report bright and early at Mayo at 6:30am for them to draw my blood to check my CORTISOL LEVELS.

At 6:40am, they are drawing more blood to do a complete panel. Thyroid, CBC, and other tests.

At 7:45am, I report for my barium swallow x-ray. Please keep your fingers crossed for me. I almost always throw up the barium. If I can't keep it down, I'm not sure they can do the test.

Tuesday, I get to go through another gastric emptying test. I'm not looking forward to that either. If I vomit up any of the eggs and toast, I will have to do the test all over again. They're going to take x-rays every 30 minutes for 4 hours. Last time I had this done, it hurt so badly.

Oh! And I'm going to take a picture of each Mayo building and review my procedures as well. I want to help ease anxiety of those who may be heading here later.

I love the hotel room. It's absolutely beautiful. It's a lot cheaper than the hotel we stayed at previously. We're staying in The Hampton Inn off of the mainland, closer to the Jacksonville beaches. Here are some pictures: