Natural Treatments for Gastroparesis Part Two

96f448a0-0f9b-4735-9ef1-ac5aaab9c6f5-1170x878As Promised, here is the second part of the article “Natural Treatments for Gastroparesis” written for the Unchargeables. This portion focuses on naturopathic remedies to treat the many symptoms of gastroparesis, such as heart burn, nausea, gas, bloating, and diarrhea. Learn how to get comfort from these symptoms and speed up your digestive system naturally.

Read Natural Treatments for Gastroparesis Part Two by Capricious Lestrange now. Part 1 can be found here, or you can learn more about what Gastroparesis is, how it’s diagnosed and traditional treatments, here.

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What is Gastroparesis?

August is gastroparesis awareness month. Since I’ve never written a piece about gastroparesis, I wanted to use the momentum of awareness month to start talking about it on the Zebra Pit. Clinically, I have no doubt about having gastroparesis (GP), but I haven’t had a gastric emptying study done yet. I don’t really know what to expect in regards to getting care from a gastroenterologist for GP, so this article will help me to understand the process and frame my own expectations as well as yours if you too suspect you may have it. My research covers what GP is, how it’s diagnosed and a few of the medical interventions available for treatment.

What Is Gastroparesis?

Gastroparesis is rare, incurable condition that affects the normal movement of muscles in the stomach, characterized by delayed gastric emptying. In milder cases, GP can also be referred to by some physicians as dyspepsia. Some people with gastroparesis experience few symptoms, while others are plagued by severe symptoms. Some researchers have proposed a classification system for GP, ranging from mild, or grade 1, to severe, or grade 3. No one is certain what exactly causes gastroparesis, but it is believed to be caused by damage to the nerve that controls the stomach’s muscles, the vagus nerve. In some cases, damage to the vagus nerve has been confirmed (Mayo Clinic).

Symptoms of GastropareisCommon GI features of GP:

  • delayed gastric emptying
  • gastric atony
  • gastric dysmotility
  • gastric stasis
  • gastrointestinal autonomic neuropathy
  • gastroparesis diabeticorum
  • gastropathy
  • severe functional dyspepsia (NORD)

 

Gastroparesis can be caused by a variety of factors, such as neuropathy, post-surgical complications, medications that cause delayed gastric emptying such as opioids, viral gastroenteritis, nervous system disorders (e.g., Parkinson’s), collagen disorders (e.g., EDS/HSD), connective tissue diseases (e.g., RA, lupus), metabolic disorders (e.g., diabetes and hypothyroidism), anorexia nervosa and bulimia, chronic liver or renal failure, and chronic pancreatitis. Gastroparesis may also be induced by medications, or associated with total parenteral nutrition or related to bone marrow and other organ transplants. Additional causes include paraneoplastic syndrome, mitochondrial disorders, visceral neuropathies, (e.g., Guillain-Barre syndrome) and visceral myopathies (e.g., systemic scleroderma) (NORD).

Reports from one tertiary referral center found that out of their 146 patients with gastroparesis: 36% were idiopathic (unknown causes), 29% were diabetic, 13% were post-surgical, 7.5% had Parkinson’s disease and 4.8% had collagen diseases (NORD).

Diagnosis of Gastroparesis

A diagnosis of gastroparesis is made based upon a thorough clinical evaluation, a detailed patient history, and a variety of specialized tests. Tests may first be performed to rule out other causes of delayed gastric emptying such as obstruction of the gastrointestinal tract. Additional tests are then performed to confirm a diagnosis of gastroparesis.

An upper endoscopic procedure could lead to a serendipitous diagnosis of gastroparesis through the discovery of identifiable food within the stomach after the pre-procedure overnight fast. This is usually a chance discovery of the disorder, however and not the first or most likely way to discover GP.

The radionuclide (scintigraphy) solid-phase gastric emptying test (GET) is the gold standard for diagnosing gastroparesis. The GET, which is a non-invasive test, is widely available and accessible. The test involves eating food that contains a small amount of radioactive material. The progress of this material is then tracked on scans. Many other methods are now being employed to track gastric emptying times; for instance a gastric breath test (not in common use in North America) and a new encapsulated recording device, called SmartPill measures gastric pH, GI luminal pressures, and determines gastric and intestinal transit time.

Other diagnostic tests for GP can include electrogastrography (EGG). The EGG can serve as a screening tool and is complementary to the gastric emptying test. The EGG is capable of detecting specific gastric electrical rhythm abnormalities and indirectly gives an indication of the integrity of the stomach’s Interstitial cell of Cajal, which are involved in the generation and propagation of electrical rhythmic activity. This test is generally done using a non-invasive method with cutaneous (skin) leads though it can also be done during endoscopy (NORD).

Conventional Treatment of Gastroparesis

In some cases, gastroparesis can be temporary. In the case of medicine induced gastroparesis, GP due to viral gastroenteritis and in some other cases, after treatment of 1-2 years, motility may return to normal, but this is rare and gastroparesis is considered incurable. It is possible to improve outcomes with treatment. The following is the treatment plan laid out by NORD:

In the case of grade 1 gastroparesis, symptoms can come and go and can often be managed through dietary modification and avoidance of medications that could exacerbate the condition. Grade 2, or compensated gastroparesis, is characterized by moderately severe symptoms. Individuals with Grade 2 gastroparesis are treated with medications that stimulate gastric emptying and medications that reduce vomiting; such individuals require hospitalization only infrequently. Grade 3, or gastric failure, is characterized by individuals who do not respond to medications used to treat gastroparesis. These individuals cannot maintain proper nutrition or hydration. Required therapies may include intravenous fluids, medications and nutrition, or surgery. Individuals with Grade 3 gastroparesis often require hospitalization.

Non-pharmacological interventions include: liquid vitamin supplements (including optimal levels of vitamin D), discontinuation of smoking and alcohol use, learning techniques of deep relaxation, the use of acupuncture or acupoint stimulation, and reviewing all medications and supplements with a pharmacist to insure current regimen is not contributing to delayed gastric emptying. Other non-pharmacological therapies for GP include autonomic retraining; often related to autogenic feedback training developed by NASA for space motion sickness, autonomic retraining has shown promise in selected patients.

Dietary changes include eating five to six small meals each day and avoiding high-insoluble fiber and high-fat foods, both of which can slow down stomach emptying. Lactose intolerance is common in gastroparesis, so avoidance of dairy is helpful, but fermented milk (yogurt) is fine. Some individuals do better with liquid or pureed foods while avoiding difficult-to-digest solid foods. Liquid nutritional supplements are also an excellent source of additional calories and proteins to make up for nutritional deficiencies resulting from a poor appetite.

Medications that stimulate gastric emptying are called prokinetics and are the primary treatment for gastroparesis. First-line medical treatment begins with the dopamine blockers. Of the two drugs, metoclopromide (Reglan) and domperidone (Motilitum), domperidone has a much better safety profile. Metoclopromide has serious neurological side effects, including irreversible tardive dyskinesia. Domperidone is now available in the United States through the FDA’s Investigational New Drug protocol. Next are the motilin agonists, such as erythromycin. Unfortunately, motilin agonists have a number of potential drug interactions and lose effectiveness over time. Cholinergic agonists, either direct-acting or via 5HT receptors, such as bethanecol (Urecholine) and cisapride (Propulsid), have been limited by the side-effect profile (especially, in the case of cisapride, for possible drug interactions) or are not used widely.

The most common symptom of gastroparesis is nausea and it can be enormously challenging to control. Often, medications used to reduce nausea and vomiting “antiemetics” are used in combinations and in conjunction with prokinetics. Common antiemetics used are prochlorperazine (Compazine), promethazine (Phenergan), and ondansetron (Zofran).

Abdominal pain is best managed by a pain specialty clinic where a selection of analgesics with the least impact on slowing the GI tract can be made.

Keeping a good bowel routine and avoiding constipation helps in the management of upper digestive symptoms of gastroparesis (NORD).

While these treatments are sometimes helpful for people with gastroparesis, at least for a period of time, most are not meant to be long term permanent solutions. There are many things one can do to improve symptoms using a naturopathic approach, which I will be addressing in a series I have written for the Unchargeables. The first article in the series, which discusses essential changes in medication and diet, can be found here; Natural Treatments for Gastraparesis. The second, forthcoming article, discusses the many natural substances you can use to treat the many unpleasant symptoms that are part of having GP.

Difficulties with Diagnosis

A doctor education presentation I found during my research stated that gastroparesis is over-diagnosed. I couldn’t help but roll my eyes at this ridiculous statement. I don’t believe it for a second. I’ve had a terrible time getting gastroenterologists to take my complaints seriously, and yet if they had, I would already have had tests for SIBO and gastroparesis over a decade ago. I have had neither, despite seeing no less than 5 GI’s in the last 20 years. Every single one has chosen to instead blame my problems on IBS, rather than run these simple tests.

And I’m not an unusual case with hard to decipher symptoms. I can no longer process most carbohydrates. I can no longer eat fatty meats. Before I modified my diet, medications and went on supplements that help, I dealt with constant stomach pain, nausea, GERD, frequent vomiting of undigested food, and often couldn’t eat more than a couple of bites before my stomach simply wouldn’t take anymore. I would be terribly bloated and miserable pretty much all the time. If not for the ways I’ve found to treat myself, I would definitely be beating down the doors of every GI in town until someone finally listened to me. As it is, I still suffer at least once a week, but usually more like 2-3 times a week with symptoms ranging from mild to severe.

I remember being frustrated by my last GI repeatedly asking me if I was diabetic. I had no idea why she kept asking and I was mildly offended that she couldn’t seem to remember or bother to refer to my chart. I have many diagnoses, but diabetes is not on the list. After she released me without having helped me (she actually made things worse then sent me on my way like I was graduating), I discovered gastroparesis through my own research. Now I’ve put it all together and I’m quite she was under the impression that she should only test me for GP if I was a diabetic, completely counting out the remaining 71% of GP patients, including myself.  In my experience, like all rare disease in this country, poor doctor education appears to be preventing proper diagnosis of gastroparesis. For this reason, when seeking diagnosis it is paramount to have your symptoms well documented and have a clear picture of what procedures and tests should be done beforehand. Unfortunately, I could only find one journal article to back up this belief and unsurprisingly, it was in relation to the underdiagnosis of gastroparesis in, wait for it, diabetes types 1 and 2.

I’m sure this is complicated by the lack of standards in what constitutes GP. While some doctors believe in stage 1 or mild gastroparesis as a diagnosis, others refuse to use the label until patients are severe, instead using the functional dyspepsia diagnosis (NORD). Issues like these only contribute to the confusion surrounding gastroparesis.

Some Final Thoughts and Next Steps

While a select set of patients do seem to recover from gastroparesis, there is no cure: However, there are many ways to manage this syndrome and make people with GP quite a bit more comfortable. When it’s necessary, one should rely on conventional methods of addressing the symptoms of GP, however there are many ways to address these symptoms using natural medicines, diet and other changes in habit and medications that often yield excellent results.

For more information, take a look at the series recently published by the Unchargeables, “Natural Treatments for Gastroparesis.”

If you’re a person with gastroparesis, what are some of the things that have brought you the most relief? Be sure to let us know in the comments!

Natural Treatments for Gastroparesis

e8c804c3-b0bd-4a46-a931-296159ecbea8The first article in the series I’ve written for Gastroparesis Awareness Month at the Unchargeables is now up! In “Natural Treatments for Gastroparesis” I provide practical solutions for the persistent symptoms that plague people with gastroparesis that are natural and easy to swallow, many of which I have had great success with myself. Join me to learn about all you can do to increase motility, reduce vomiting, nausea, bloating and pain in this series.

Read the article, “Natural Treatments for Gastroparesis, Part One,” now.

Side Leg Lifts and IT Band Stretches

SideLegLiftsSide leg lifts work the hips, glutes and thighs. They are appropriate for any level. If you have a collagen disorder like EDS or MCAD, be careful not to hyper-extend yourself when doing these exercises and stay in normal range of motion, while keeping your leg and foot in line with your body.

I also demonstrate a couple of different stretches for your IT bands, which run along the outer portion of the rear thigh and tend to get pretty tight on those of us with degenerative disc disease, collagen disorders and connective tissue diseases. Remember, stretching is only a good idea for areas of tightness with collagen disorders, as stretching extends the length of the tendons and ligaments, it does not loosen muscle. I’ve also found that blasting along the IT band helps some, but my thighs are still terribly fascia bound and it’s really hard to get deep enough with thighs as heavy as mine, so I haven’t really been working on them much. I’m hoping that I’ll have more success as I lose weight.

For full instruction on the side leg lift, see this video:

You can also perform the side leg lift standing, which makes it convenient and easy to do anywhere, so long as you have the core to support it. To perform the standing side leg raise, stand next to a chair or wall and hold on for support. Transfer your weight to your right leg then lift your left leg out to the side at a comfortable level. Return to the starting position in a slow, controlled manor. Complete the desired number of repetitions. Then repeat the exercise with your right leg. Switch legs and repeat until you have completed all your sets. Of course if you have POTS or NMH or are deconditioned and have difficulty staying on your feet for very long, it may be best to do them lying on your side.

Preparing for Concerts and Events with MCAS

When deciding to attend my first concert since 2010 I was excited, but wary. Music has always been a fundamental part of my life and mental well being. Being disconnected from music while dealing with too many neurological symptoms to tolerate it was a special sort of hell for me. Even once I was well enough to tolerate listening to some music at home, live music seemed like an assault on the senses and something I would never be able to enjoy again. I knew from a couple of attempts at seeing local bands at outdoor events that this activity wiped me out like no other, even when I just sat and listened. When I began researching mast cell activation syndrome (MCAS), I came to understand this might be due to the way my mast cells were reacting to vibration, but I decided to take my chances anyway. Today, I want to share with you how that experience went, how I prepared for it and what I might do differently next time to help you get the most out of your concert experience.

I’ve been doing better than I have been in a long time and an outing of several hours where I can both sit and stand is certainly manageable despite having multiple disabling chronic illnesses. With the help of medical procedures, diet, exercise, supplementation and the medications I take, my fatigue levels are much lower and many of the symptoms that used to be a constant in my life; migraines, dizziness, weakness, vomiting, chronic pain and brain fog are mostly well controlled and only occasional visitors now.

Despite all of this improvement, I’m having a hard time controlling my MCAD reactions and symptoms (which I assume is probably MCAS since it fits well with my EDS and POTS dx, but I don’t begin testing until August 29 for diagnosis). I’ve had these problems for years, but in much smaller scale. That is until this spring when I began reacting as if I were allergic to almost everything in the known universe.

I’ve been on a mast cell mediator called quercetin for about 3 months now. The longer I take it, the more my symptoms improve. I still cannot leave my house without wearing a mask and my diet is very restrictive, but my reactions aren’t quite as severe. I no longer have to take Benadryl regularly, instead reserving it as the rescue med it should be unless I know I’m going to be exposed ahead of time. It seems like each week there’s a bit of improvement in how I feel overall and the amount of time it takes me to recover from exposures. Going to a concert on July 31 didn’t seem like that big of a risk. Luckily I turned out to be right, but I did still have a reaction and I’m at a loss to say it was caused by anything other than the vibration I experienced.

Concert Preparation

To prepare for the concert, I took benadryl, along with extra zyrtec, flonase and ketotifen eye drops. We got lucky and pollen counts were nil due to regional rainstorms so I didn’t have to wear my mask on the drive from Northern Kentucky to Indianapolis. I put my mask on as soon as we arrived at the venue, as I knew I would be exposed to a variety of colognes, body products and cleaning agents. Without a doubt, I made sure I was well protected. Since I was a little worried about the sound levels and getting a migraine, I took ear plugs. I wore them through the opening act (and frankly would have appreciated better ones to drown them out), but the theatre kept the sound levels at acceptable levels and I was able to remove them for the main attraction.

Since I still react to food so easily and can no longer process carbohydrates or fatty meats due to GP, we no longer attempt to eat out unless there’s absolutely no other choice and we never combine it with other activities if at all possible. The potential to ruin things with a bad meal is just too high. We ate an early dinner before leaving and I packed snacks from home, consisting only of things that I eat every day. Since I am a POTSie, I also packed Oral Rehydration Salts and dressed in layers, just in case I started having issues with blood pressure fluctuations and dizziness or difficulty regulating my temperature and made sure I was well hydrated.

MCASConcertPrepAs usual, I stocked my traveling pill case to ensure I had everything I needed; benadryl and asthma rescue meds, pain relievers and muscle relaxers, extra midodrine just in case the ORS isn’t enough, triptans for migraines and an antiemetic. I store all of these things, along with my ORS, mask, tissues, eye drops and nasal sprays in an over the shoulder purse or body bag that never leaves my person.

Even though it was a 2.5 hour drive and we knew the concert would go until 10 or 11, we opted not to stay overnight, because this simply presented too many complications for me at this point. I was worried about reacting to everything from the hotel linens to being able to get safe foods to eat. I stand by this decision, as I believe it helped me to keep my total exposure down to whatever got through my vogmask (which is very, very little) and the vibration I experienced from the loud music.

I’m sure 5 hours of driving contributed to my fatigue, but two 2.5 hour drives with a concert in between wasn’t overly taxing. We took a break going in each direction and made sure we stayed hydrated. It may seem strange, but I opted to drive on the way there. I feel better when I’m the driver in a car rather than the passenger. This doesn’t make sense when considering that mental exertion can be just as taxing to an EDS body as physical exertion, but I believe it works better for me because keeping my arms on the steering wheel actually helps me to maintain better posture than I would sitting in the driver’s seat playing on my cell phone or whatever. I always find myself uncomfortable, shifting to find a better position and putting my feet up on the dashboard, which sometimes hyper-extends my knees and hurts my ankles, even if it does assuage my POTSie symptoms. No matter how I try, I always come out of the passenger experience in more pain and fatigue than I do when driving.

We gave ourselves plenty of extra time to get there, both in case traffic was bad and so I didn’t feel stressed out about making it on time. As a trifecta zebra, stress will put me into a flare faster than almost anything. Feeling in control in the driver’s position with plenty of extra time really helps to dissipate those tensions.

Arriving at the Concert

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We got there about 45 minutes before the concert started and it was perfect. We were able to get good parking in a lot right across the street and we had plenty of time to gather our things and calm any butterflies. My husband and I both have anxiety about crowds these days, so we like to ease into these things. I took a dose of Benadryl just before going in and chugged down a little water to ensure I was well hydrated before snapping a couple of pics and heading inside.

I was distracted by the crowds and forgot to put on my mask until after we were already inside and I got a big whiff of cologne. I ran from the cloud and donned my mask. We got a drink and sat in our seats, getting acclimated to our surroundings and admired the beautiful old theatre. I put in my ear plugs and prepared for the opening act. We were both freezing and I was grateful for my shrug.

Everyone remained in their seats for the opening act, so I took the time to relax. Once Erasure came on stage, everyone stood up and I did, too. I was a little worried about spending too much time on my feet, but I felt pretty comfortable with it and wanted to see them perform. Erasure is a group I’d wanted to see since I was 15 years old and I fully intended to enjoy it. I removed one ear plug and was pleased to find that the music wasn’t overwhelming at all, so I stuck my ear plugs in my pocket. Soon my shrug came off, as I started moving to the music and sweating.

After a while, I was all out dancing. I felt great and I could hardly help myself. The energy was amazing and I really couldn’t have asked for a better concert to start with. I could tell all my exercising had really paid off. I felt strong and in control of my movements. Still, I was careful not to bounce on my feet or jump around for fear of jamming or dislocating something and ruining things.

We sat when we needed a break and rejoined the reveling when we were ready. I felt great and I think I actually spent more time on my feet than my husband did. I sang and shouted through my mask and laughed when people stared at me and my mask like I must be crazy. I didn’t care what anyone thought. It was my night and no one and nothing was going to ruin it. I cried for the joy of it all.

After the Concert

On the way home, I still felt great, though the fatigue was starting to catch up to me. I let my husband drive home so I could nurse my growing pain and eat something. We talked about the concert, listened to music and sang too loud all the way home. Neither of us suffered any hearing loss and we both felt pretty good.

I had a terrible time sleeping when we got home around 1 am and it was well past 4 in the morning before I could sleep. I woke after only 5 hours. I was sore and fatigued and starting to feel a bit like I’d been pummeled by all that beautiful music. By the afternoon my head was pounding with an all over mast cell headache. My back was bothering me a bit and my head itched terribly, but I didn’t pay it much attention until later that night when I went to scratch my back and felt three giant cysts growing there. I looked in the mirror and realized my entire back was covered in cysts and hives.  I took a double dose of Benadryl and my husband covered my back in hydrocortisone cream, which calmed things down fast.

853.jpegFor two days, I experienced a variety of symptoms, from nausea and diarrhea to a stuffy nose and eyes that wouldn’t quite focus right. My symptoms seemed to run the gamut and include every system of the body. My dysautonomia flared and I grew dizzy, anxious and bone-weary. I wasn’t sleeping well. My brain fog even increased, making it harder to concentrate or remember things, while my nerves lit up here and there, causing sharp shooting pains at random.

If you’d like to learn more about how mast cells react to vibration, this study on vibrational urticaria gives a great details and discusses the genetic origins for vibrational urticaria that isn’t a part of MCADs. This Wikihow does a nice job of breaking down ways to help treat a vibrational urticaria reaction, which for some, is a genetic disorder that’s not associated with MCAS. It proposes much of what I’ve written here, along with taking warm showers instead of hot, avoiding the use of soap, and using cold compresses in addition to oral meds and creams to calm hives and pumps that occur as a result.

Putting It into Perspective

Luckily, this little firework display of symptoms didn’t last long, nor did I have to continue taking the Benadryl for long. After 72 hours, I mostly felt like myself again. Had I attempted a concert back in April before I began to get things moving in the right direction concerning my mast cell issues, I have no doubt the payback would have been much worse. Perhaps in a year, assuming I have things under even better control, it’s possible that the payback will be even less. Even if that’s not true, so long as my baseline is somewhere in the neighborhood of where it is now, I would do it again with barely a hesitation.

My advice to anyone with the trifecta who wants to enjoy loud events is to consider not only what kind of payback you might anticipate, but also what the experience itself will do for you. As zebras and spoonies are so often denied so many experiences because of our vast limitations, sometimes we just have to say fuck it and pay the consequences so we can soak up the joy until it all comes crashing down. Of course, there are smart ways to do it and then there are those ways which will put us down for weeks. Had I not prepared well, had I decided to eat out, to leave my mask behind or get that hotel room, I’d probably be writing a very different article. DO the things you love most, but find ways to do them that work better for you. Pick the periods when you’re doing particularly well. Prepare. Keep your exposures to an absolute minimum. Take notes for the next attempt. They may still turn out to be hard on you, but you could take the recovery time from weeks to just days.

I can compare this experience to going to a Bengals game just a couple of years back. I attended that game in a wheelchair trying to cut down on payback. It took me weeks to recover and I held on for dear life just to get through it; not the most enjoyable of experiences. I had prepared, but I wasn’t treating my MCAS (if anything I was in denial about having it), I ate at the stadium, and I had no idea that vibration was affecting me this way. If I had a skin reaction after that game I don’t remember, but I certainly wouldn’t have connected it with the vibration of stomping, screaming fans and the loud speakers placed throughout the facility blaring music and announcements.

Finally, If you haven’t been diagnosed with MCAS, but this all sounds familiar to you, get tested. Don’t wait until you’re in a state of constant reaction like I did. There are many things that can substantially improve MCADs and the earlier the intervention, the better the outcomes.