gallbladder removal Archives

The Gallbladder: An Essential Organ Influenced by Hormones

Published on June 23, 2022

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I was told I did not need my gallbladder – that it was a nonessential organ. Hearing that from a surgeon convinced me to have it removed to rid me of abdominal discomfort and nausea. An ultrasound showed some gallstones, but no other reason for removing the organ was presented to me. I was 29 years old and not a savvy patient like I am today. I didn’t ask questions or seek alternative treatments or a second opinion. I was a working mom with no time to be sick. “Just take it out,” I said.

That “non-essential” organ proved to be very essential for my body. Immediately following the procedure and for the next 14 years, I suffered from severe pain in my right side, nausea, and a multitude of other disabling symptoms. I was eventually diagnosed with Sphincter of Oddi Dysfunction (SOD), a condition where estimates of 75-98% of sufferers are women. The majority become afflicted after their gallbladder has been removed. As such, many of us with SOD regret having had this operation.

What Does the Gallbladder Do?

The gallbladder is a small organ that stores the bile produced by the liver. After a fatty meal, the body releases a hormone known as CCK that signals the gallbladder to release bile. Then the bile flows down the bile duct into the small intestine to emulsify and digest fats. The liver, where the bile is produced, also uses bile and the gallbladder to remove toxins from the environment, food, and other wastes. The bile stored and delivered by the gallbladder is different from the bile created and secreted by the liver. Bile in the gallbladder is more concentrated due to its removal of some water and electrolytes.

Gallbladder Removal (aka Cholecystectomy)

Over half a million people in the United States have their gallbladders removed every year. Clearly, it is a booming business. The common reasons for cholecystectomy are:

Gallstones (cholelithiasis)
Infected or inflamed gallbladder (cholecystitis)
Non-functioning or under-functioning gallbladder
Blocked bile ducts (ex. sludge or scarring)
Cancer and congenital defects (less common)

As you can see in some cases it is in the best interest of the patient to undergo cholecystectomy. However, some develop secondary symptoms that are worse than their original gallbladder symptoms.

Postcholecystectomy Syndrome—Symptoms to Consider

New symptoms may arise following a cholecystectomy. This is known as a postcholecystectomy syndrome (PCS). It is estimated that 10-20% of cholecystectomy patients develop PCS. Without the function of the gallbladder in place, some of the problems patients experience range from annoying to life-threatening, ex. abdominal pain, bile diarrhea, bile reflux, gastritis, IBS, pancreatitis, liver disease, and what I have–SOD—where the pancreatic and biliary valves do not open and close properly. At the time of this writing, an excellent overview of the various PCS complications and more information about PCS can be found in the Medscape article, “Postcholecystectomy Syndrome.”

The Gallbladder and Hormone Connection

According to Johns Hopkins Medicine, the prevalence of gallstones is higher in women than men. Female sex hormones adversely influence bile secretion from the liver and gallbladder function. Estrogens increase biliary cholesterol saturation (the main ingredient for gallstones) and diminish bile salt secretion, while increased progesterone may lead to inhibition of the contraction of the gallbladder, reducing bile salt secretion and impairing gallbladder emptying. Due to fluctuating hormones women experience during pregnancy, it is not uncommon for women to develop gallstones during this time or shortly thereafter.

Alternatives to Cholecystectomy or “I Wish I Knew Then What I Know Now”

You can prevent gallbladder problems in many ways. Eat a diet low in saturated fats and sugars. Avoid crash diets. Try to eat whole foods rather than processed products with multiple ingredients (especially those with ingredients you can’t pronounce). Exercise. If you are on birth control or hormone replacement therapy, talk with your doctor about the effects they may have on your gallbladder. If they are unsure, your neighborhood pharmacist may be helpful or ask for a referral to someone who may be able to help answer your questions.

If you already have gallbladder issues, here are some alternatives to cholecystectomy to consider:

Endoscopic Retrograde Cholangiopancreatography (ERCP): a non-surgical procedure used to remove stones, sludge, treat SOD, place stents or apply balloon dilatation to widen the bile duct, and use special X-rays for diagnostic purposes.
Extracorporeal Shock Wave Lithotripsy (ESWL): uses high-frequency sound waves to shatter cholesterol gallstones into pieces small enough to pass through the bile ducts into the intestines.
Ursodiol: a medication that suppresses cholesterol production in the liver, reducing the amount of cholesterol in bile.
For women: seek out a functional MD or naturopath to get your hormones in check naturally.
Supplements and Herbs: I recommend only taking these under the care of a naturopath, herbalist, traditional Chinese medicine practitioner, or other alternative healthcare providers knowledgeable in the benefits and side effects of such medicinals.

Be leery of Internet claims to cure your gallbladder issues. For example, I did not list gallbladder flushes as for some people, these can be very dangerous.

Gallbladder symptoms can be quite disabling and prompt anyone to run to an operating room table for relief. If your symptoms are tolerable, try alternative therapies and talk with your doctor about ERCP, ESWL, and Ursodiol as alternatives. However, if your well-being and life depend on having your gallbladder removed, take what your doctor says very seriously.

Image: Laboratoires Servier, CC BY-SA 3.0 <https://creativecommons.org/licenses/by-sa/3.0>, via Wikimedia Commons

This article was published previously on Hormones Matter in March of 2015.

Problems after Gallbladder Removal: Postcholecystectomy Syndrome

by Brooke Keefer

Published on May 18, 2021

126555 views

Obviously, you can survive without a gallbladder. Otherwise, gallbladder removal (cholecystectomy) would not be such a common surgery. In fact, over 600,000 people in the U.S. have their gallbladders removed yearly. However, surviving without an organ and living a healthy life without it are two very different things.

Following a cholecystectomy, you are more prone to developing certain health problems. For example, you are at greater risk of developing a fatty liver, diarrhea, constipation, biliary issues, indigestion and developing deficiencies of essential fatty acids and fat soluble nutrients. Bile, which is necessary for digesting fats and proteins and metabolizing fat soluble vitamins and minerals, is no longer stored and concentrated in the gallbladder. This can lead to unpleasant symptoms.

When your body is void of a gallbladder, bile freely flows from the liver to the bile duct, exiting through the sphincter of Oddi into the duodenum (the first part of the small intestine). The high-water content of bile is no longer removed and overly concentrated bile is not conjugated in the gallbladder.

Change in bile chemistry isn’t the only thing that occurs after cholecystectomy. Surgeries are never perfect and fool-proof. Therefore, human error can bring about injury to the ducts. Adhesions (scar tissue) can form following surgery and some people are more prone to developing them. A remnant cystic duct (the duct that once connected the gallbladder to the common bile duct) may cause problems. Also, dramatic changes may occur within the liver itself due to the absence of a gallbladder.

Any health issues or symptoms arising because of gallbladder removal is called postcholecystectomy syndrome. Postcholecystectomy syndrome describes the appearance of symptoms after cholecystectomy. It is widely estimated 10-15% of the population experience some form of postcholecystectomy syndrome, but Merck Manual estimates anywhere from 5-40% of cholecystectomy patients are afflicted. Isn’t it interesting that a seemingly disposable organ could wreak such havoc on our bodies once it is removed?

The most common causes of postcholecystectomy syndrome relate to the change in bile flow and concentration, complications from surgery (i.e. adhesions, cystic duct remnant, common duct injury), retained gallstones or microscopic gallstones (biliary sludge), effect on sphincter of Oddi function, and excessive bile that is malabsorbed in the intestines. Jensen, et al described in their research paper, Postcholecystectomy Syndrome, over 60 different etiologies of postcholecystectomy syndrome.

Diagnosing Postcholecystectomy Syndrome

If you are experiencing troubling symptoms following a cholecystectomy, talk to your gastroenterologist or primary care doctor. He/she will likely order blood work, specifically liver function tests. In addition, you may want to ask that your vitamin and pancreatic enzyme levels be tested, since bile is required to metabolize fat soluble vitamins like vitamins A, D, E and K; and some postcholecystectomy issues affect pancreatic enzyme output.

Depending on the results of your bloodwork, your doctor may order an imaging study (x-ray, ultrasound, MRI, or CT scan), a functional test (gastric emptying study or small bowel follow-through) or a procedural test (endoscopy, colonoscopy, barium enema). If these tests are inconclusive, your doctor may want to conduct a more in-depth procedural test like an endoscopic ultrasound or Endoscopic Retrograde Cholangiopancreatography (ERCP) to get a better look at the ducts, liver, and pancreas. In rare cases, your doctor may recommend exploratory surgery.

There are also alternative tests a naturopath or functional medicine practitioner could offer, i.e. comprehensive stool analysis, or hormone and nutritional tests. Keep in mind that for some postcholecystectomy patients, the answers to your symptoms may not be revealed in typical bloodwork, scans, or procedures. Tests are not fool-proof for all patients. Many patients have disabling symptoms and their bloodwork and scans are normal. “Normal” test results can come as a relief. However, when you do not get an answer to your woes, it can be quite frustrating. This does not mean, though, you can’t treat your symptoms.

Treating Postcholecystectomy Syndrome

The most common postcholecystectomy issue is bile acid diarrhea. Because bile is being dumped and no longer processed, the intestines receive an excess of bile or bile that is difficult to reabsorb. This may cause moderate to severe diarrhea in some people, especially after eating.

Ask your gastroenterologist or primary care doctor about prescribing cholestyramine, a bile acid binder. It will bind the bile acids and, in most cases, reduce this form of diarrhea. Always pay attention to side effects like constipation, bloating, or flatulence to gauge how much cholestyramine is appropriate for your individual situation. If the cause of your diarrhea originates from bile, cholestyramine will likely help you. If the cause of your diarrhea is from irritable bowel syndrome (IBS) or another cause, this therapy will not be effective. For other forms of diarrhea, you may need an IBS-specific medication or natural therapy.

Another postcholecystectomy issue, mostly affecting women, is Sphincter of Oddi Dysfunction (SOD). SOD symptoms are upper right quadrant pain, nausea/vomiting, bowel, and other issues. For more information on this condition, read my article, Sphincter of Oddi Dysfunction, or go to the SOD Awareness and Eduction Network website. In addition, I published The Sphincter of Oddi Dysfunction Survival Guide this past summer.

Microscopic gallstones and biliary sludge can cause problems too, but is difficult to diagnose unless you have an ERCP. If you have constipation, upper right quadrant pain, and nausea, you may have biliary sludge. If you and your doctor suspect this, he may want to prescribe ursodeoxycholic acid, which reduces the cholesterol content in bile. Alternatively, an ERCP can clean out the duct.

Consult with a natural health practitioner if you’d rather go the holistic route. He/she can prescribe the essential fatty acids Omega 3 and 6 (bile is needed to convert these fatty acids), digestive enzymes, a bile replacement supplement, homeopathic remedies, and/or herbs (ex. dandelion, milk thistle, turmeric, peppermint, and bitters). In addition, chiropractic, acupuncture and Chinese medicine, and other natural therapies have helped people with postcholecystectomy syndrome.

General Diet and Lifestyle Remedies

After I had my gallbladder removed, I had to change my eating habits to avoid unpleasant symptoms. Overeating spelled disaster for my strained liver, pancreas, and ducts. It is best to try to eat several small meals a day or eat smaller portions at breakfast, lunch, and dinner. Going too long without eating is also bad as our bodies signal bile to be released at certain times of the day. Not eating can lead to bile acid diarrhea and intestinal discomfort.

Don’t eat fast. Instead, chew your food thoroughly and take your time. This will benefit your entire digestive tract and organs so they don’t have to work as hard. Your digestive system starts in your mouth where enzymes are released to start the digestion process. Taking the time to allow these enzymes to mix with your food is essential for proper and thorough digestion.

Eat a low-fat diet. This does not mean you should avoid all fats. Instead, be mindful of the amount of fat grams you ingest, especially saturated fats. The Mayo Clinic recommends keeping fat intake under 3 grams per meal and snack. Greasy, fried food may no longer be your friend. It is wise to hold off on re-introducing fatty foods high in saturated fats. If you don’t, you may experience pain, gas, or diarrhea. Some of the worst offenders, besides fried foods, are cheese, fatty luncheon meats or sausages, hot dogs, fatty pieces of steak, dark meat portions of poultry, butter, and all oils except medium-chain triglycerides (MCT) oils. MCT oils, i.e. coconut and palm kernel oil, do not require bile for digestion.

The juice of certain vegetables can do wonders for the liver and biliary system. Beets, apples, and ginger all support bile formation. Beets are probably the best vegetable for your liver as they contain important liver healing substances, including betaine, betalains, fiber, iron, betacyanin, folate, and betanin.

Betaine is the substance that encourages the liver cells to get rid of toxins. Additionally, betaine acts to defend the liver and bile ducts, which are important if the liver is to function properly. Additionally, beets have been linked to the healing of the liver, a decrease in homocysteine, an improvement in stomach acid production, prevention of the formation of free-radicals in LDL, and the prevention of lung, liver, skin, spleen, and colon cancer.

Apples contain malic acid which helps to open the bile ducts that run through your liver and reportedly soften and release the stones. Apples are also high in pectin. Ginger is reported to increase gut motility and bile production. You can add ginger to food dishes or eat it raw. I prefer to juice ginger and drink a small amount of the extract. The extract can also be added to juiced fruits and vegetables. Be careful, though, as it is spicy and pungent. You only need a small amount.

Other foods reported to protect the liver and increase bile production are bitter foods such as dandelion and mustard greens, radishes, artichokes, fruits high in vitamin c, and cruciferous vegetables such as broccoli, cauliflower, and cabbage.

Stay tuned for my next book, Living Well Without a Gallbladder: A Guide to Postcholecystectomy Syndrome, which will be published Summer 2017.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on January 30, 2017.

Living Well Without a Gallbladder: A Resource for Treatments

by Brooke Keefer

Published on October 24, 2017

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In July, I published my second book, “Living Well Without a Gallbladder: A Guide to Postcholecystectomy Syndrome,” to help patients suffering from symptoms following gallbladder removal (cholecystectomy). As a regular contributor to Hormones Matter, I have written two articles about the gallbladder, The Gallbladder: An Essential Organ Influenced by Hormones, where I discussed the importance of the gallbladder, the gallbladder/hormone link, and ways to avoid a cholecystectomy; and Problems after Gallbladder Removal: Postcholecystectomy Syndrome, where I described conditions and issues that arise following cholecystectomy, and information on obtaining a diagnosis.

In this article, I will complete the gallbladder trilogy with treatment resources for people suffering from symptoms following gallbladder removal due to postcholecystectomy syndrome.

Dietary Basics Postcholecystectomy

Regardless of your postcholecystectomy symptoms or diagnosis, it is very important to follow certain dietary rules now that your body no longer has a gallbladder. The foods your body will have the most difficulty digesting are fats, even healthy fats, due to the change in bile consistency and flow, since bile is necessary for digesting fats. Therefore, a low-fat diet is always recommend postcholecystectomy.

You may have difficulty digesting proteins and high cholesterol foods like dairy and eggs as well. However, I don’t recommend limiting your protein intake. Instead, space proteins out and eat them several times a day and not with a fatty meal. Frequent, small meals will be easier on your digestive system after cholecystectomy. In other words, do not overeat!

Postcholecystectomy patients will have a more difficult time digesting long-chain triglycerides (LCTs) as opposed to medium-chain triglycerides (MCTs). The fats in our food are composed almost entirely of LCTs. When we consume fats composed of LCTs they travel through the stomach and into the intestinal wall. It is in the intestines where most of fat digestion occurs. Pancreatic enzymes and bile are necessary for the digestion of LCT fats.

MCT fats are processed differently. After eating a fat containing MCTs, such as coconut oil, it travels through the stomach and into the small intestine. However, since MCTs digest quickly, by the time they leave the stomach and enter the intestinal tract, they are already broken down into individual fatty acids and do not need pancreatic enzymes or bile for digestion.

Therefore, as your bile output and consistency may be compromised as a person without a gallbladder, stick to MCT fats like coconut oil and palm kernel oil. Butter, whole milk, and cheese all contain MCT fat but they also may contain a high amount of LCT fat. Limit these. Otherwise “healthy fats” may not be so healthy. Foods touted as healthy fats like avocado, olive oil, nuts, and fatty fish may not be so healthy for a postcholecystectomy patient.

Keep in mind that although MCT oils are great alternatives for cooking and acquiring fat for energy, it is well-known that MCTs are not a good source of essential fatty acids. Therefore, if your diet is high in MCTs, you will want to supplement essential fatty acids like Omega 3 and 6. Supplementing with an Omega 3 supplement like fish oil will likely benefit all cholecystectomy patients.

If you are experiencing unexplained symptoms and suspect certain foods may be the culprit, I suggest starting a food and symptom diary. Food diaries are easy tools to identify trigger and safe foods. The most common problematic foods for postcholecystectomy sufferers are: fried foods, spicy foods, fatty and oily foods, coffee and anything with caffeine, chocolate, red meat and pork, alcohol, some fruits especially acidic fruits, and difficult-to-digest raw vegetables.

Along with a low-fat diet, gastroenterologists and dieticians often recommend trying a FODMAP diet. It is usually reserved for irritable bowel syndrome, but some with other postcholecystectomy conditions find it helpful. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. These foods contain difficult-to-digest sugars and fibers that can cause bowel problems like excess gas, painful bloating, and constipation or diarrhea.

Liver-Healing Vegetables and Fruits

The juice of certain vegetables can do wonders for the liver and biliary system. Beets, apples, and ginger all support bile formation. Beets are probably the best vegetable for your liver as they are a high-antioxidant vegetable that contain important substances like betaine, betalains, fiber, iron, betacyanin, folate, and betanin.

Pectin, which is a fiber found in beets, can also help clean the toxins that have been removed from the liver, allowing them to be flushed out of the system instead of reabsorbed by the body. Betaine is the substance that encourages the liver cells to get rid of toxins. Additionally, betaine acts to defend the liver and bile ducts, which are important if the liver is to function properly. This substance is also said to decrease the risk of coronary and cerebral artery disease.

Apples contain malic acid which helps to open the bile ducts that run through your liver and reportedly soften and release gallstones. Apples are also high in pectin.

Ginger is reported to increase gut motility and bile production. You can add ginger to food dishes or eat it raw. I prefer to juice ginger and drink a small amount of the extract. The extract can also be added to juiced fruits and vegetables. Be careful, though, as ginger is spicy and pungent. You only need a small amount.

Lemon is purported to benefit the liver as well. The high citrate content in lemon increases the liver’s ability to remove toxins. In addition, lemon contains a bioflavonoid called hesperidin, which protects the liver from damage, assists with digestion in the stomach (enhancing the effect of stomach acid), and inhibits fat synthesis.

Other foods reported to protect the liver and increase bile production are bitter foods such as dandelion and mustard greens, radishes, artichokes, fruits high in vitamin c, and cruciferous vegetables such as broccoli, cauliflower, and cabbage.

Natural Treatments Post Gallbladder Removal

Natural treatments will depend on your postcholecystectomy symptoms and condition. What may work for one condition may hinder another. It is also important to keep in mind that with almost every “remedy” you must give it some time to see if it will help you. I recommend seeking a consultation with a natural health practitioner who can “prescribe” the right natural remedies for you and monitor your progress or side effects.

The most common natural remedies for postcholecystectomy syndrome are:

Bile Acids—to supplement lost bile acids and help bile flow.
Digestive Enzymes that contain protease, lipase, amylase, and lactase.
Herbs—be careful with herbs as they can increase bile flow and can spell disaster if you have a blockage from a stone or biliary sludge. In addition, drug-induced liver injury has been linked to herbs. Therefore, seek a consult with a natural health practitioner to ask about these most common herbs used by postcholecystectomy patients: dandelion root, Oregon grape root bark, gentian root, and wormwood leaves, artichoke leaf extract, milk thistle, gentian root extract, and valerian.
Turmeric—purported to protect the liver and reduce cholesterol levels, inflammation, fibrosis and bile duct obstruction.
Choline—aides in the absorption of fat and cholesterol and helps your liver create lipoproteins.
Betaine—helps your body breakdown and absorb fats.
Lecithin—keeps cholesterol from solidifying in your body and helps support your digestion of fats.
Soluble Fiber—may benefit patients experiencing bile diarrhea or bile reflux.
Magnesium—possesses natural antispasmodic qualities for intestinal and biliary/pancreatic sphincter spasms.
Fat Soluble Vitamins—since bile helps your body absorb fat-soluble vitamins such as vitamins A, D, E and K, you may need to supplement some or all of these to reach optimal levels.
Probiotics—some studies have shown probiotics benefited fatty liver disease and biliary cholangitis infections. Raising the level of “good gut bacteria” can be helpful to overall digestion.
Betaine HCL with pepsin—raises stomach acid levels, which is needed to properly digest food and absorb vitamins and minerals. It is especially helpful for those with bile reflux, which can alkalinize the stomach environment.
Chinese Medicine—can be helpful in balancing the digestive system and improving qi—the circulating life force whose existence and properties are the basis of Chinese philosophy and medicine.
Castor Oil Packs, Ayurveda, Essential Oils, Yoga, Breathing Exercises, Meditation, Biofeedback, Reiki, Visceral Massage, Bioidentical Hormones —are all said to benefit a variety of digestive conditions. Information can be found online and through YouTube videos.

Medications

Medications are typically used to treat specific symptoms, rather than as a preventative measure. It is important to not only thoroughly discuss your symptoms with your doctor, but to also educate yourself on prescription medications.

The most common medication for postcholecystectomy syndrome is a bile acid sequestrant (ex. Cholestyramine, Colesevelam, Colestipol) which binds to bile and reduces cholesterol. It is mostly used for bile acid diarrhea. Another commonly prescribed medication is ursodeoxycholic acid (ex. Ursodiol, Actigall). This medication may be used to dissolve microscopic gallstones and “thin” the bile.

Other medications are:

Prescription pancreatic enzymes (Creon, Zenpep)
Anticholinergics/antispasmodics (hyoscyamine, chlordiazepoxide (clidinium), dicyclomine, scopolamine, glycopyrrolate, amitriptyline, nortriptyline, atropine and combinations of these generics with phenobarbital and belladonna)
Muscle relaxants (cyclobenzaprine, carisoprodol, baclofen and buscopan)
Calcium channel blockers (nitroglycerin, nifedipine, diltiazem, amlodipine and felodipine)
Anticonvulsants (gabapentin and forms of gabapentin)
Antidepressants (any, but most commonly prescribed for digestive disorders are serotonin uptake inhibitors)
Low dose naltrexone—an immune modulator that has been effective in treating autoimmune disorders
Medical marijuana—seek professional medical advice on the best formula ratio of THC/CBD (the active medicinal ingredients in marijuana) for your condition.
Hormone therapy/birth control—hormones play a vital role in digestion and medications containing estradiol and/or progesterone have been helpful to some postcholecystectomy patients, particularly women.
Medications to specifically treat nausea, irritable bowel syndrome and gut motility may also be helpful.

In some cases, the only helpful resolution to postcholecystectomy symptoms is surgery. Your gastroenterologist or a Hepato-Pancreato-Biliary surgeon can help guide you in whether surgery could be helpful or is necessary.

Disclaimer: All material in this article is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, readers should consult appropriate health professionals on any matter relating to their health and well-being.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image: www.scientificanimations.com, CC BY-SA 4.0, via Wikimedia Commons.

An Unlikely Advocate for Pain Medication Access: A Chronic Pancreatitis Patient Speaks Out

by Brooke Keefer

Published on January 6, 2016

5604 views

I never thought I would be an advocate for pain medication access. I have been clean from alcohol and non-opiate drug abuse for 17 years. I am an active member of a 12 step fellowship. I sponsor women and have a sponsor. I regularly attend meetings. For most of my recovery I was anti-pain medication. I still believe opioid pain medication should be avoided in most situations. I also advocated against pain medication—so that it would not get into the hands of teens.

From Sphincter of Oddi Dysfunction To Chronic Pancreatitis

I dealt with sphincter of oddi dysfunction pain for over 13 years, never taking opioid pain medication for this condition. I also have painful neuropathy for which non-narcotic medication did not help. I chose to treat with alternative therapies, which sometimes helped. This year I was diagnosed with chronic pancreatitis. Chronic pancreatitis is well documented in the medical literature as being “excruciating”, “severe”, and even “miserable”. Some medical articles have documented chronic pancreatitis pain as worse than pancreatic cancer pain. In some states I qualify for palliative care, one step down from hospice care. There are no evidence-based treatments for chronic pancreatitis pain other than opioid pain medication and total pancreatectomy (pancreas removal).

The horrible unrelenting pain flares drove my family and me to seek pain management. After all, I wanted to die. I am not just saying I wanted to die. I mean I really wanted to die. The pain was on par with labor pain. Imagine trying to function every day in labor—but have no break in between contractions? I learned to function with the daily pain but when the flares came on I thought I would die and if I didn’t I surely needed to figure out how to end my life and suffering. My primary care doctor and a gastroenterologist I later fired tried me on the usual first line treatments for pain. NSAIDs gave me microscopic colitis. Tylenol was useless. Non-cholinergics like amitriptyline caused severe itching in places I’d rather not mention. Nerve medications like gabapentin and Lyrica and anything affecting GABA caused flu-like symptoms and exacerbated my pancreatic symptoms (pancreatitis is a side effect). I tried hypnotherapy, acupuncture, reiki, yoga, meditation, magnesium, and any natural remedy I came across.

Chronic Pancreatitis — The radiating pain of chronic pancreatitis.

Eventually pain of this level wears on the body and mind no matter how hard you are working at treating it. Finally, after heavy consult with my Higher Power, sponsor, mom, husband, and a close recovery friend, it was decided I needed to actively seek stronger more effective pain relief. My primary care and pretty much all primary care doctors in my area have a policy of not prescribing opioid pain medication. Specialists, unless you have cancer, don’t either. No pain management doctor in our area who takes insurance will prescribe pain meds anymore—they only offer injections, procedures, and non-narcotic medications. At one point I relented out of desperation to have a celiac plexus nerve block. The pain doctor kept insisting it was the only thing that worked for pancreatic pain. My primary care totally bought into it too, mostly I felt because he didn’t have to write a prescription. These doctors had no clue how tapped in I was with research. Nowhere was it documented to be a proven treatment for chronic pancreatitis. Regardless, because I was desperate for pain relief and told this was my only hope, I paid a hefty copay, spent half the day in the hospital, was sedated and had a needle stuck through my abdomen. It did nothing. No relief.

A Near Stroke from Severe Pancreatitis Pain

At one point my body just could not handle the pain anymore. I had gone so long suffering that it said, “enough.” One evening a few months ago the pain intensified to a degree my blood pressure doubled (I have one of those little machines) and my right side went numb. I was about to have a stroke! From pain! Luckily I was saved with emergency pain medication. At this point my gastroenterologist was infuriated my primary or any pain doctor would not try to manage this. He ended up prescribing a low but effective dose of an opioid for the flares so I wouldn’t stroke out and die. Unfortunately, the hospital he worked at told him I needed to find pain management. I finally found a doctor quite a drive away who I have to pay out of pocket because apparently insurance companies think they are the DEA now and don’t want to approve insurance for pain doctors who prescribe opioids. For now, I have a safety net. I do not enjoy pain medication and only take when I absolutely need to. My recovering addict friends don’t get it and quite frankly they don’t have to. Try walking in my shoes, having chronic pain and illness for four years straight. Trust me, the only pill you’ll desire is one that makes you feel normal, not one with side effects.

Guidelines on Pain Management Ignore Chronic Pain

When the opportunity arose to comment on the draft Center for Disease Control’s “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my grant reviewer skills to objectively identify the strengths and weaknesses of the document with the hope it would help pain patients. Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids times 100. It is a warning for all doctors to not treat pain! Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of chronic pain patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process.

Yes, there are harms and risks with opioids, but a document meant to help primary care doctors in prescribing should be just that. It is biased in that it quotes very little about the realities of opioid treatment—that it is sometimes the only treatment modality left for some people. Even the DEA and 21 Health Organizations wrote, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve”.

The guideline talks about other medications and treatments yet fails miserably at discussing the lengthy side effects and risks of these treatments. They are conveniently omitted. The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting nor does it flesh out overdoses or drug use that involved polydrug use of illicit drugs or alcohol. Instead of a literature review detailing harms and risks doctors need supportive information. I would hope that a doctor knows the risks of any medication they are prescribing.

What Pain Management Guidelines Should Address

The guideline should explain that primary care doctors may be the only opioid prescriber in a patient’s area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. Also, doctors need to learn how to educate patients on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications. Just because you are on pain medication does not mean you are a drug user or an active addict.

Patients need to be taught basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication.

The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic as the media is reporting. Overdoses and drug abuse are rare in the chronic pain patient population. There is no evidence chronic pain patients become heroin addicts. In fact, the only heroin addicts I’ve met who used to be chronic pain patients were those who were cut off from their doctors with no treatment plan. Proper pain management actually prevents illicit drug abuse. Hopefully the chronic pain patient’s story will be heard. So far, the government and media have turned a blind eye to them.

Photo by danilo.alvesd on Unsplash.