This is the second year we held an online survey for SOD patients. Participants were recruited via our website, Facebook page, support group, and other SOD groups online.
Anyone who spends a day on our Facebook support group, or any other SOD group, could predict some of the outcomes. Still other responses were quite revealing and potentially debunk common theories/statistics. The total number of survey respondents was 197. Not all respondents answered every question. To view the results of the 2013 annual survey click here. Demographics
96% were women and 4% men. Last year it was 98% women.
The majority age group in which SOD symptoms began was 30-39 years old at 36% of total respondents. Next were ages 20-29 at 27%, followed by ages 40-49 at 19%, 50+ years old at 10%, and under 20 years old at 8%. This is interesting as most research articles and medical websites say SOD is most common in middle aged women. Our survey contradicts this. One possible explanation for this discrepancy is it often takes several years to obtain an SOD diagnosis.
Average age was 42. This is probably where the “middle aged woman” theory comes into play as many are (hopefully) diagnosed by the time they hit middle age, though symptoms existed long before the diagnosis.
SOD Types: 8% had SOD Type I. 26% had SOD Type II. 26% had SOD Type III. 13.5% of respondents were not diagnosed with SOD yet but they or their doctors strongly believed they had SOD. Rounding it out, a surprising 26% did not know which SOD Type they were.
SOD Effect on Life
Other specified: Pancreatitis, Unintended Weight Gain, Diarrhea, Missing Work, Being Told “but you don’t look sick”, Trying to Explain SOD to People, Diet, Mounting Bills, Treated as a Drug Seeker, Being Misdiagnosed, Depression/Anxiety Over Being Sick, Fear of Next Attack, Diarrhea.
*if disabled estimate number of days you would have worked.
The personal, financial, and societal impact of SOD is tragic. SOD patients miss out on life, lack financial security, and spend much of their lives in a mostly unsupportive medical system. The cost of SOD to insurance companies and governments is astronomical. Here is a rough cost analysis:
According to Kaiser State Health Facts, the average cost for one inpatient day in the hospital is $2,090. Applying the numbers above, it cost $3,148,200 in inpatient days for 192 SOD patients.
The Washington Post analyzed emergency room costs and determined the average cost per visit was $1,233, which translated to $1,660,851 for the 192 SOD patients' total ER visits.
Add to the emergency room costs a CT scan, which is commonly performed every time an SOD patient enters an ER. The discrepancies in the cost of CT scans can range from $2,325 to $6,400 depending on which hospital you go to (source: New Choice Health). Take the average of that and a whopping $5,876,287 was potentially spent on these patients for CT scans.
Do not forget to include the 2,759 office visits that can range from $200-$400 per visit--an approximate $827,700 total for our participants.
The total for all reported services listed above is $11,51,038. That equals $59,963 per patient each year.
This is just the tip of the iceberg. We cannot even to begin to actualize the cost for missed days of work, unemployment, and disability. Many SOD patients go into severe debt from the mounting copays.
By now we would expect an interest from the insurance companies and government to help advocate and coordinate care for SOD patients; and invest in SOD research. Though some insurance companies offer "care coordination", according to SOD patients, it is rarely helpful or effective. And, the research the U.S. government has invested in SOD is minuscule. These outcomes reinforce what we as patients know--that SOD is a public health crisis in dire need of attention at the local, national, and international levels. Moreover, the above results are not unique, mirroring the results of last year's survey. Therefore, we do not need an actuary to predict the answers and financial/social impact for 2015.
Tests and Treatments
Other not included in list reported by respondents: Morphine Provocation, Abdominal Ultrasound, Gastric Emptying Study, Extensive Blood Tests, BRAVO ph test, Debray Scan, Self diagnosis—no one believes it.
These statistics document the many hoops SOD patients must jump through to reach an SOD diagnosis. These tests add up to a financial and societal burden in the form of copays, insurance costs, and hours/days of missed work. The risks involved with some of these tests is great. Many SOD patients endure numerous CT scans which increase a person's risk for cancer. ERCP with manometry carries the risk of acute pancreatitis and in a few people, septic cholangitis. Any of the other tests are not without some risk. In many cases symptomology, along with a few exclusion tests, can determine malfunctioning sphincters. Regardless, such a diagnosis is still an educated guess (but so were fibromyalgia, lupus and Epstein Barre syndrome).
All "other" treatments and specific medications will be added to The SODAE Network Treatments series found in the Resources/Links section. Most of the treatments listed above carry risks. Medications are likely the safest option for treatment. Doctors should trial medications to determine whether any will offer their SOD patients a quality of life. Non-traditional medications may also be helpful. For example, a few patients benefited from low dose naltrexone, which is being studied and touted for it's anti-inflammatory and immune modulating actions. Unfortunately, SOD sufferers face difficulty obtaining any medication--non-narcotic or narcotic. Many sufferers struggle with their general practitioner's or gastroenterologist's unwillingness to trial non-narcotic medications that have proved helpful to other patients. We are not sure the reason for this.
Though SOD is a very painful condition (often a 10 out of 10 on the pain scale),the majority of patients are refused a trial of narcotic pain medications by their general practitioners and gastroenterologists most often due to regulatory fears (opiophobia) and the risk of addiction. We read countless stories of patients being treated as and labeled drug seekers by emergency room and hospital staff. Since SOD patients cannot manage their pain at home, the emergency room becomes their revolving door for pain relief. It is important to note that not all pain medications work and some make SOD pain worse. Morphine has been used to "test" SOD as it typically increases sphincter spasms. That being said, there are some non-narcotic and narcotic pain medications that are helpful. A few sufferers achieved a quality of life through pain pumps and transdermal pain patches that, in most cases, do not produce intestinal side effects. Patients should opt for a second or third opinion if they feel they aren't receiving an adequate trial of techniques to resolve or improve symptoms.
If a trial of medications has been exhausted, more invasive procedures should be considered, again, to offer SOD patients a quality of life. Thinking outside of the box is paramount. Recently, a few patients have reported success with spinal cord stimulators and nerve blocks for chronic pain. For mild to moderate cases, alternative and complementary treatments should be considered. Sometimes a trip to a naturopath, functional MD, nutritionist, acupuncturist, reiki master, or yoga or mediation class can prove quite helpful.