Insurance questions: Anorexia / Unable to eat due to chronic abdominal pain.

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Jane Fugee
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Date Joined Dec 2017
Total Posts : 4
   Posted 12/4/2017 11:56 AM (GMT -7)   
Hi!

I’m new to this forum, but am very glad that I’ve found it!

I’m basically an anorexic, even though I don’t have anything against food. I have been having severe abdominal post-prandial pain for over a year, and I’ve gradually given up trying to eat much solid food. I live on smoothies, Glucerna, electrolyte drinks, and the ocassional bowl of soup. I’ve lost 28 pounds, which is about 20% of my pre-illness body weight. I’ve tried a zillion diets, but all food seems largely the same to me— I have pain if I eat it. I try to compensate by eating as little as possible.

My RUQ pain is near-constant, and is at least partially positional: I feel better lying on my stomach. I have developed a lot of food phobias, and I have early satiety, so I never eat anything in much quantity. I’m functionally an anorexic, though people usually tell me that I “don’t look sick”. But I’m terrified of what will happen when I’m down to 120, 110 and 100, and I feel like I’m treading water, waiting for someone to see me as “acute” and step up the extremely slow testing process that I’ve been undergoing over the past year.
I’ve had tons of blood work, upper & lower endoscopies, gallbladder ultrasound, and a CT scan. Will have a HIDA scan on Friday. All have been normal. I need to see someone who can look at my pain from a vascular point of view....

I live in a really rural area of Colorado, and our health insurance options are very very limited. I’m stuck between a rocka and a hard place, as I need to step up the level of care I am getting. However, since my husband and I are self-employed, we have struggled a lot to maintain our income while dealing with my medical issues, so I recently forfeited my private insurance, and put us on Medicaid. This has been hugely important in keeping us afloat through some really difficult times. But Medicaid is not accepted by the kind of tertiary care centers that I need access to. I am desperately in need of some coordinated care. Even if I gave up my Medicaid and went back onto an ACA plan, there are no plans that would allow us to go to a place like Mayo. The University of Colorado medical system does not accept Medicaid outside of certain urban boundaries (according to my GI Doc). I think I may have something along the lines of Superior Mesentaric Artery Synrome (SMAS), but my GI doc seems to be running out of ideas. (The radiologist who read my CT claims I do not have SMA Syndrome. But are they really looking at other possibilities — and how would I know this information?

So I’m looking for work arounds that would (preferably) allow us to remain on Medicaid. Concierge Medicine? Medical Tourism? Maybe I need a patient advocate who could help me better understand my options. Any thoughts on how to manage my chronic condition from an insurance point of view would be most appreciated.
Chronic Abdominal Pain: Seeking an diagnosis.
Fugeeland.com

straydog
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Date Joined Feb 2003
Total Posts : 15332
   Posted 12/4/2017 2:03 PM (GMT -7)   
Sorry to read about what you are struggling with. At any point have you had any psychological care for the anorexia? In all honesty I do not of any way of doing a "work around" to get medical care/testing. Drs will take into consideration prior normal testing, length of time that the testing was done & then decide if any of these tests should be repeated. Now that you are on Medicaid you will be limited on what they will authorize. Concierge Medicine is a cash pay program & any testing would have to be paid upfront. Unless you have a stack of money laying around testing is can be expensive.

You may want to obtain a copy of the written reports of all testing that you have had done to date to see what is in the reports. Drs are often not open to patients telling them what they read on the internet, I don't know if its an ego thing or what.

I hope you can get some answers. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

rocckyd
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Date Joined May 2012
Total Posts : 1102
   Posted 12/4/2017 11:04 PM (GMT -7)   
Have you had any type of motility testing? One that I had was a gastric emptying study. I ate radioactive scrambled eggs(yum-not), and scans were done over 4hrs to see if motility was an issue. There is also a sitz marker test where you swallow little radioactive markers, and again, motility can be followed. These are just 2 examples. The tests that you've had done basically provide a snapshot or view of what is happening at that exact moment, but the gi tract is never still. If the tests have come back normal, it could be because you don't have a structural problem or blockage.

Of course, all the possible testing available will do you no good if insurance won't authorize it.

As far as insurance issues, I have no idea what can be done. I do have quite a bit of knowledge when it comes to motility issues. Currently I'm doing ok, but I've had feeding tubes in the past and also IV nutrition-TPN. Obviously I'm not a Dr, but I might be able to answer questions as to what I've experienced as a patient.

I'm so sorry that you are going through this. Gi issues are no fun. We need everything to be in working order so our bodies can get the much needed fuel to go about our daily lives. It becomes both mentality and physically exhausting when everything goes haywire.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

pitmom
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Date Joined Jan 2015
Total Posts : 2186
   Posted 12/5/2017 6:04 AM (GMT -7)   
I don't know if N.O.R.D. National Organization for Rare Diseases, would be able to help you get the testing you need. My daughter has Cushing's Disease...in the U.S. that means a diagnosis of one in one million. We got a lot of information from NORD.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

(Seashell)
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Date Joined Dec 2012
Total Posts : 680
   Posted 12/5/2017 1:24 PM (GMT -7)   
I did spend some time reading through your journaling at your personal web site, Fugeeland.com.

From your journal writings it is evident that you have significant life stressors and unfulfilled aspirations that are impacting you from several directions.

You have had benefit of numerous diagnostic testings without a glaring finding. The CT, if read by a competent radiologist, would have given some inkling if superior mesenteric artery involvement. You could certainly take the disc of your CT scan and have it interpreted by another radiologist. A second opinion would be a reasonable option.

An angiogram of the vascular tree serving the omentum and small and large intestines would be a more specific study for SMA dysfunction. But given a negative CT scan it would be difficult for a physician to warrant an angiogram. Angiograms have significant risks of their own. An angiogram is not a benign study.

I have significant intestinal issues owing to a severe perforation and sequela about 6 years ago. I exist on thick liquids and purée foods and can tolerate only about 3-4 oz at a time. For now, you may need to keep to liquids and purées, adopting a strategy of grazing and mini-meals. I am petite. about 80 to 85 pounds. I do not think that you will find physicians concerned with your weight loss. I do not see an ushering of care.

Medical science has caused me more grief than healing. I have had more misdiagnoses than accurate findings. Be careful as you navigate the labrynth of medical care. You can be harmed.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Jane Fugee
New Member


Date Joined Dec 2017
Total Posts : 4
   Posted 12/5/2017 9:16 PM (GMT -7)   
Thanks everyone for your thoughts! I have had very significant stressors in my life over the last year, not the least of which has been a lot of financial strain due to our employee amputating 3 fingers just before our busy season, when we really needed her to help us filfill our contracts. I have been in intensive talk therapy, but I don’t think that is the underlying reason for my pain. Things have eased up over the last few months as we’ve had to make significant changes to accommodate both our employee and my illness, and a tremendous amount of travel related to healthcare.

I have not had any functional studies, and I wouldn’t be at all surprised if I have gastroparesis. I have a HIDA scan on friday, and we will see how functional my gallbladder is.

The good news is that I called a surgeon in Denver that has been highly recommended by others dealing with very similar situations. He is with University of Colorado Hospital, which apparently is a tertiary care, He will review all my records and talk with a team of other doctors in different disciplines and then they will let me know what they think is the most appropriate thing to do, and hopefully they can better evaluate whether I am acute or not. And hopefully fix me up with the “right” team that can actually deal with me in a time frame that is appropriate for my situation. And they will take my state medicare. So it seems like a huge relief and a first step toward actually finding a useful diagnosis that might allow me to be less of an invalid and more able to eat.
Chronic Abdominal Pain: Seeking an diagnosis.
Fugeeland.com

Mercy&Grace
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Date Joined Jun 2013
Total Posts : 1703
   Posted 12/6/2017 1:35 PM (GMT -7)   
Medicaid in not accepted by most providers. Teaching and public hospitals usually accept Medicaid.
You do need to be prepared to undergo psychological evaluation

If you aren't seeing a,psychologist. You need to seriously look into it. Although, Medicaid is nit going to pay for the time you need with a psychologist. Concierge Medicine is not what you need. Plus, it is very expensive. And it only applies to one doctor

Jane Fugee
New Member


Date Joined Dec 2017
Total Posts : 4
   Posted 12/6/2017 4:02 PM (GMT -7)   
Thank you Mercy&Grace... I do tend to bristle a bit at the whole “you need psychological care” comment. I am in intensive therapy at great personal cost, which is a big part of the reason that we are on Medicaid—- because we’ve spent $20k on therapy this year. However my problem is not psychological... it is a functional physical problem. I use the term “Anorexic” because to my knowledge, there is no proper term for someone who doesn’t eat because they are physically unable to eat (due to nausea, early satiety, and extemporaneous abdominal pain.) I certainly have sitophobia ( fear of eating due to the unpleasant symptoms), though this definition also seems to suggest that one still has an appetite, which I am increasingly losing, as I’ve had to survive on less and less food. I would love to be able to eat, but I can’t. It isn’t because I fear gaining weight or want to look a certain way. It is because I cannot eat without severe pain.

I hate it that I am on this situation . I hate that I am on Medicaid and desperately seeking solutions, but we have a medical system that is extremely cruel to people struggling to remain in the middle class like me. Of course I am extremely stressed, and have no idea how to manage my illness. But it is always difficult to hear things like “you don’t seem that sick, or scrawny. Maybe you need psychotherapy.” I have been exploring every avenue I can find for the past 6+ months. Yet we don’t know if I have gastroparesis, pancreatitis, I’ve had no functional studies. I’ve been treated as non-acute despite numerous ER visits, and months of waiting and begging for a sense of urgency. I am terrified that there is something seriously wrong, because I don’t think it is “normal” for someone to be in excruciating Post -prandial pain no matter what I try. But I can see that not everyone agrees, and it is one of the additional forms of trauma that I experience along with my chronic pain. I’m sure that I’m not alone in this. It is very difficult.

Mercy&Grace
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Date Joined Jun 2013
Total Posts : 1703
   Posted 12/6/2017 4:45 PM (GMT -7)   
Chances are they will want to rule out the psychological aspect first.

A psychologist will show you how to deal with stress, anxiety, depression, etc . And the situations that causes those problems . Psychologists are far better than counselors or psychiatrists for many mental health problems.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 12/8/2017 8:33 AM (GMT -7)   
Thinking of you today as you have a HIDA scan and functionality study of your gall bladder.

I hope you gain information relative to your ongoing nausea and pain symptoms.

Good luck and Best wishes,
Karen

Jane Fugee
New Member


Date Joined Dec 2017
Total Posts : 4
   Posted 12/8/2017 12:22 PM (GMT -7)   
Thank you!
Chronic Abdominal Pain: Seeking an diagnosis.
Fugeeland.com

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2186
   Posted 12/8/2017 7:53 PM (GMT -7)   
From Taber's Cyclopedic Medical Dictionary

Anorexia: Loss of appetite. Seen in depression, malaise, commencement of fevers and illnesses, also in disorders of alimentary tract, esp. of stomach, and as a result of alcoholic excesses and drug addiction, esp. cocaine.

Anorexia nervosa: Loss of appetite for food not explainable by local disease. It is a complex condition that is poorly understood; thought to be a symptom of mental illness...

So to be anorexic is to be experiencing loss of appetite. To HAVE anorexia nervosa is a totally different thing.

Hope you find some comfort in this Jane, if not finding comfort in your body. Much love, Dana
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

straydog
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Date Joined Feb 2003
Total Posts : 15332
   Posted 12/8/2017 8:49 PM (GMT -7)   
Great post PM. I have read Jane's original post several times & wondered to myself later, has she been dx'd as anorexic, or is this how she explains how her symptoms are.
Susie
Moderator in Chronic Pain & Psoriasis Forums

pitmom
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Date Joined Jan 2015
Total Posts : 2186
   Posted 12/8/2017 9:04 PM (GMT -7)   
Susie, I've been tiny all of my life. I cannot tell you how many times people ask me how much I weigh and when I tell them 90 lbs...they reply with "You MUST be anorexic!". I usually respond with "No, my name is Dana, not Ana." It's tiring. Additionally, I have depression which leads to experiencing anorexia...loss of appetite.

Many people get the symptom (anorexia) confused with the illness (anorexia nervosa).
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus
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