Crohn's Disease Forum » General IBD Discussion » Need some serious help and advice. New here.


01-21-2019, 11:41 PM   #1
LifeIsAMystery
 
Join Date: Jan 2019
Need some serious help and advice. New here.

Hi everyone, I stumbled across this forum during a google search. I could seriously use some advice... but first, let me give you a quick history on me:

I'm a 29 year old male. I've suffered stomach cramps (lower left), diarrhea, alternating food allergies (actually tested positive, then they go away after avoiding for years), struggled with weight loss basically since I was 11 years old. When I was 11-15 I had severe, SEVERE cramping before diarrhea to the point I was almost paralyzed in pain. I was diagnosed with IBS at the Mayo Clinic when I was 13. The one test I never did was a colonoscopy, however. When I was younger I got about one glass into the gallon prep and was so sick to my stomach I couldn't finish.

Every doctor since then has told me I just have IBS. Tried anti-depressants, anxiety meds, changing my diet, etc. My diet is extremely limited now. All I eat every day for years now is lean Chicken and plain white rice.

I recently started seeing a new GI, he did a new test no one ever performed: Fecal Calprotectin. The range is 50-120 for "normal" - I tested at 128.8. He says this indicates inflammation and I need a colonoscopy because he suspects Crohns or UC. My problem now, is that my insurance is refusing to cover anything "diagnostic", and the procedure is nearly $7,000 out of pocket. The Dr. office says that's just how much it costs if my insurance doesn't cover it.

I've asked about alternative tests that might be cheaper, and explained the pricing, my doctor just says "We need to get the test done" - to which I tell him, I know, but I can't afford it.

Does anyone have any ideas on affordable colonoscopies, other possibly cheaper tests to diagnose, or what my FC test number might indicate? He refuses to treat me without a colonoscopy.

I have cramping and pain about 1-2 times per week followed by loose stool or diarrhea. My non-painful stools are still loose. I have also gone through periods of constipation, it swings back and forth sometimes.
01-22-2019, 11:08 AM   #2
Scipio
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$7000 is a premium price. Can you shop around for a better price? The prices of colonoscopies can vary widely from one venue to the next.

Here are some comparison prices for here in San Diego:

https://www.newchoicehealth.com/plac...py/colonoscopy

Perhaps you can similarly shop around and compare prices in your area.
01-22-2019, 11:20 AM   #3
LifeIsAMystery
 
Join Date: Jan 2019
Thanks for the response. Unfortunately I cannot shop around. My insurance limits me to one medical group. I spoke with my GI's assistant yesterday and she explained to me they don't set the pricing, but that the medical group does, so even if I see another doctor in the medical group the pricing will be the exact same.

My only hope is calling a financial counselor, but she said they usually help people who have poor income. My income is decent, it's unlikely I will receive help. Sometimes it feels like you're being penalized for not being poor or rich, if you're somewhere in the middle you get screwed.

I'm going to discuss with the financial counselor anyway, but I'm not sure what my options are if they can't help.
01-23-2019, 11:32 AM   #4
SN8888
 
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I've always heard that IBS (and other things like taking ibuprofen) can lead to slight increases in FC. Your is very slightly elevated and doesn't necessarily mean that you have IBD. There are many here who have reported values of 500 to 1000 and higher.

But....You should follow your Dr's advice over anything you read here and don't ignore severe symptoms and test results, etc.
01-23-2019, 03:44 PM   #5
Lisa
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Ok, I'm a little confused here.....

My problem now, is that my insurance is refusing to cover anything "diagnostic", and the procedure is nearly $7,000 out of pocket. The Dr. office says that's just how much it costs if my insurance doesn't cover it.
Are they refusing to cover the cost at this time, because they want you to go through other, less costly/invasive diagnostic testing? Or are they flat out refusing to cover any diagnostic testing? That just doesn't sit right - how are you supposed to be diagnosed/treated for something if there are no tests run.....OR do you have a bare-bones basic coverage that doesn't provide diagnostic coverage.....

What country are you in, that might help clear things up.
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-24-2019, 07:16 PM   #6
LifeIsAMystery
 
Join Date: Jan 2019
Ok, I'm a little confused here.....



Are they refusing to cover the cost at this time, because they want you to go through other, less costly/invasive diagnostic testing? Or are they flat out refusing to cover any diagnostic testing? That just doesn't sit right - how are you supposed to be diagnosed/treated for something if there are no tests run.....OR do you have a bare-bones basic coverage that doesn't provide diagnostic coverage.....

What country are you in, that might help clear things up.
Hi there. Let me answer your questions:
- I live in the USA. IL.
- I have insurance off the marketplace, it is Blue Cross Blue Shield Silver HMO plan (not bottom of the barrel, but not top tier either, right in the middle)
- I have had a Fecal Calprotectin test (which I'm repeating now, actually per my GI guy)

My GI wants to do the colonoscopy. I asked him about other tests being a possibility (or cheaper?) such as capsule, imaging scans, etc. but he is only willing to do the colonoscopy. So at this time, no one wants to do any other testing. I'm basically told colonoscopy is my only option at this point. I have been waiting almost a year without being able to afford the colonoscopy. It may be another year before I can.

My insurance is refusing to cover the cost because it is diagnostic instead of preventative. They said because I haven't been diagnosed with anything (yet... but... how can I if I don't get the test?!) and because I'm young (29) they don't cover diagnostic colonoscopies. If I'm diagnosed with something after the first one, then they will cover future colonoscopies but the first one I have to pay out of pocket basically. I have to pay my out of pocket cost for the year first, and then they cover 50% of whatever is remaining. My out of pocket cost for the year is $7900.

I spoke with a financial counselor at my medical group, they said the best they can do is 35% discount and 200/mo payment plan. This puts me at about $4,500 still... it's better than $7,000, but it's still a lot of money to pay out of pocket, and the $200/mo is like leasing another car for pete's sake.
01-24-2019, 07:30 PM   #7
Scipio
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Can you switch to another GI in your plan? I agree with your GI that you need a colonoscopy, but you might be able to find one a lot cheaper offered by a different GI at a different practice or institution.
01-24-2019, 08:43 PM   #8
LifeIsAMystery
 
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Can you switch to another GI in your plan? I agree with your GI that you need a colonoscopy, but you might be able to find one a lot cheaper offered by a different GI at a different practice or institution.
I could try, but I asked the billing people about that and they said the cost isn't determined by the doctor, it's determined by the medical group, and I'm limited to their medical group with my insurance - so essentially they were telling me it would cost the same no matter which doctor I went to?

It's all very frustrating!
01-25-2019, 06:21 AM   #9
my little penguin
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You could look for another Gi in another city or state
Get a list of all approved providers from your Gi across the country
There would be more Gi groups approved
You may have to travel but might save you money in the long run
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01-25-2019, 10:12 AM   #10
SN8888
 
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While you're deciding how to proceed, there are a few things you can do to try to help yourself:

1. Check out the Persky Farms Microscopic Colitis forums (Google it). They have a very specific approach for treating MC

2. See if your library has (or can get) "Breaking the Viscous Cycle" or even "The Yeast Connection" (I believe the "Yeast Connection" is fundamentally wrong about a few things but the very low carb diet can be helpful).

3. Saccharomyces Boulardii is a huge help for me (along with a low-starch, gluten-free, dairy-free diet). I get Jarrow brand on Amazon, but Florastor is a reputable brand and more widely available.

4. You can look up the Pepto Bismol protocol of Dr. Kenneth Fine - it's something like 4 chewable Pepto twice a day for 6 weeks??, but you have to stop and take a break from it (the Bismuth can build up in your body). This may be more relevant for MC (like #1), but IBS-D may have similarities to some forms of MC.

Eating a lot of rice would be a big problem for me when my system is having trouble....it doesn't directly cause any GI problems, but may be feeding the bacteria and things that your system is reacting to (if you believe in theory behind the Specific Carbohydrate Diet and similar diets)
01-25-2019, 11:37 AM   #11
Scipio
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I agree with my little penguin. It's inconceivable that your current GI practice is the only one in Illinois that takes your insurance. Check around. There must be some other options. You might have to drive 20 or 30 miles to another town, but that would be well worth the thousands of dollars you could potentially save.
01-25-2019, 12:39 PM   #12
LifeIsAMystery
 
Join Date: Jan 2019
I agree with my little penguin. It's inconceivable that your current GI practice is the only one in Illinois that takes your insurance. Check around. There must be some other options. You might have to drive 20 or 30 miles to another town, but that would be well worth the thousands of dollars you could potentially save.
Let me clarify a bit: My insurance IS accepted by other doctors from other medical groups, but apparently my insurance limits me to one medical group. So if I wanted to switch medical groups, I can absolutely do that, but I would be losing all of my other doctors that I'm established with in my current medical group and would need to replace them with new doctors in the new medical group, which I would prefer not to do if possible since I have a few other doctors I'm established with and I like them.

If I stay within my current medical group, I can easily switch GI docs (have done it before) but the billing department is telling me that the cost for colonoscopy is the exact same no matter which doctor I see because the medical group sets the price, not the doctor themselves.

I certainly don't mind traveling, I've even been as far as the Mayo Clinic when I was a kid. My insurance plan is the limiting factor here. If I want to see a doc within another medical group I can, but I have to switch everything to their group and there is no guarantee it'll be cheaper.

I might have to do some research and try to get quotes from other medical groups, I would really rather not switch all of my doctors and get new ones but if it comes down to it I might have to if its significantly cheaper at another group.
01-25-2019, 12:44 PM   #13
LifeIsAMystery
 
Join Date: Jan 2019
While you're deciding how to proceed, there are a few things you can do to try to help yourself:

1. Check out the Persky Farms Microscopic Colitis forums (Google it). They have a very specific approach for treating MC

2. See if your library has (or can get) "Breaking the Viscous Cycle" or even "The Yeast Connection" (I believe the "Yeast Connection" is fundamentally wrong about a few things but the very low carb diet can be helpful).

3. Saccharomyces Boulardii is a huge help for me (along with a low-starch, gluten-free, dairy-free diet). I get Jarrow brand on Amazon, but Florastor is a reputable brand and more widely available.

4. You can look up the Pepto Bismol protocol of Dr. Kenneth Fine - it's something like 4 chewable Pepto twice a day for 6 weeks??, but you have to stop and take a break from it (the Bismuth can build up in your body). This may be more relevant for MC (like #1), but IBS-D may have similarities to some forms of MC.

Eating a lot of rice would be a big problem for me when my system is having trouble....it doesn't directly cause any GI problems, but may be feeding the bacteria and things that your system is reacting to (if you believe in theory behind the Specific Carbohydrate Diet and similar diets)
Thanks for the tips and advice. I will check into this stuff. Unfortunately I suffer from severe food allergies (anaphylaxis) and my diet is extremely limited. I basically eat white rice and chicken every day for every meal. I have for years now. Occasionally I can tolerate white bread and some small servings of vegetables like green beans.

I'm deathly allergic to dairy and tree nuts - and I have other allergies that test as "severe" but non-anaphylaxis.... but they keep changing every few years and I keep having to adjust my diet. This is through an actual medical allergy test btw, not self-diagnosed.. and it seems to help when I cut things out of my diet I'm allergic to. The problem being that it's constantly changing so I have to get tested every year.... although, the last few years I didn't re-test and I probably should go back to do that again.

Unfortunately I can't take most probiotics like Florastor because they contain dairy. I've tried some vegan probiotics before and it didn't do anything to help.
01-25-2019, 01:14 PM   #14
my little penguin
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Vsl #3probiotics is top eight free of alllergens (made in Italy )
Ds takes those (IgE treenut/fish allergy-epi etc.. ) as well
Are they basing your food allergies off ige testing alone ?
That has a very high false positive rate (50%)
Ds tests ige positive to a ton of foods
Only truly allergic to tree nuts /fish
They used to do panel tests when ds was little
They no longer recommend those

Still confused on your insurance requiring a specific “medical group”
PCP I understand
Or certain docs in network
But an entire medical group and only choosing docs from the group ????
01-25-2019, 02:23 PM   #15
LifeIsAMystery
 
Join Date: Jan 2019
Vsl #3probiotics is top eight free of alllergens (made in Italy )
Ds takes those (IgE treenut/fish allergy-epi etc.. ) as well
Are they basing your food allergies off ige testing alone ?
That has a very high false positive rate (50%)
Ds tests ige positive to a ton of foods
Only truly allergic to tree nuts /fish
They used to do panel tests when ds was little
They no longer recommend those

Still confused on your insurance requiring a specific “medical group”
PCP I understand
Or certain docs in network
But an entire medical group and only choosing docs from the group ????
I looked into VSL #3 - it looks like this is something I'd have to have prescribed by my doc? I can ask him. I read here that it contains trace dairy, though https://probiotics.org/vsl-3-review/ is that true?

My allergy tests have always been the kind where they prick your back with 100 different allergens and see if you react.
01-25-2019, 08:00 PM   #16
my little penguin
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That’s patch testing which is done for patients with eosinophilic disorders
And is a large panel
Most allergist no longer do those larger panels since it’s highly unlikely to give good as (in truly allergic results )
They do ige single blood tests and a single skin prick (on the forearm ) with a histamine control /saline

To give you an idea when ds was 4
They did larger panels as standard practice
He tested positive to rice corn barley oats peanuts tree nuts soy and something else
He was eating peanut butter daily -so not allergic
Actually was only allergic to tree nuts on that entire list
He added fish allergy later
The gold standard for allergy testing is double blind in office food challenge
Only way to know
If you can eat a full serving
Then not allergic that simple

Vsl#3 changed where is was produced
The ones made in Italy are allergen free (contain corn ) as far as I know but check with the pharmacist
The older boxes made in the US do contain milk
It’s otc for the single packets or capsules just kept in the pharmacy
Only the higher dose packets (900 billon) require ms a prescription (ds takes theses )
02-12-2019, 03:36 PM   #17
kiltubrid
 
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What is your out of pocket cost annually?

128.8 is not terribly elevated. I had 135 last week and my doctor barely batted an eye at that. She’s just watching things. I’d consider looking for a new gastroenterologist who might be willing to treat you with less drastic and costly measures, e,g. Waiting a few weeks and rerunning the lab test to see where you are.

Also, you are doing the right thing with the diet in the meantime. I know it’s boring but it is best in the long run. You could also try plain pasta, bananas, and soft overcooked baked potato. Smaller meals more frequently can help, too.

Good luck! And check back in to let us know how you are doing.
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