Bad scope

[jadegreen]

Hey there folks. I'm feeling pretty down. After 3 years of trying to follow the SCD (and to be clear, *trying* is the key word here), I had a scope and my Crohn's has not improved. It seems like I had some remission after doing EEN, but the inflammation has come back.

It's been extremely hard for my husband and I to keep up with cooking for me and my son (who has a different GI condition called EOE) because we both need whole-foods diets that are opposing in many ways. My son has immediate reactions if he accidentally eats a trigger food, I have no reaction if I eat a trigger food.

In fact, the ONLY foods/components that I know I have immediate reactions to are peanuts and gluten. Otherwise, I have no idea if I have any other trigger foods because my Crohn's is silent otherwise. Some people feel bad later if they eat something that doesn't agree with them. That doesn't happen for me. I am completely in the dark.

So, now my doctor, husband and I are all considering the drug route, and I feel worried: how are we going to pay for this? Will I experience side effects? How will we even know if it's working? Doc suggested an MRI soon because she couldn't get very far past the ileo-cecal valve with the camera. It doesn't fill me with enthusiasm, because I'm breastfeeding baby #6 and he isn't close to weaning (I'm worried about the toxic metal solution they make you drink). The doc suggested another scope in five years. I don't WANT to have a scope sooner than that, but does that make sense since I have no idea what's going on inside me? I've gone all this time having few symptoms, how am I supposed to know if the drugs are even working?

 

[jadegreen]

I guess I'm just thinking and musing out loud here, but what about stress? Doesn't stress make this disease worse?

I have suspected that my psoriasis acts up when my gut is acting up, and I've been stressed by several things happening in our life (conflict at our church, a local move) in the last four months, and I think that's when my psoriasis started to flare up. What if that's when my gut started to flare up again as well? I just have no way of knowing, I guess. It's really frustrating.

I guess I'm wondering if our stress reduces, will my inflammation will just go away? I know I would LIKE to think reducing stress would improve things.

 

[Scipio]

I guess I'm wondering if our stress reduces, will my inflammation will just go away? I know I would LIKE to think reducing stress would improve things.

Stress is one of those conditions that makes pretty much every medical problem worse. (Diabetes is another.) Reducing stress can only help, but I doubt that it will make Crohn's go away. To the best of my knowledge, stress has not been identified as a cause of Crohn's.

Based on my own experience, I support giving the biologic drugs a try. They are not the answer for everyone, but my major Crohn's regret is that I did not try them sooner.

Crohn's is a serious disease. Not normally deadly but seriously debilitating and destructive to having a normal life. And serious diseases almost always require strong medicine. Diet helps with Crohn's, but it is mild medicine. You need strong medicine to get this disease under control.

The side effects of Crohn's medications are real but very rare. The bad effects of uncontrolled Crohn's disease are real and very common.

I tried for years to get by on clean living, exercise, and minimal Crohn's medication. My Crohn's was fairly mild, and so it didn't seem like I needed strong medicine. And the strong medicine's long list of potential side effects sounded so scary. And for several years I got away with it. But my disease suddenly got aggressive, and I soon found myself on an operating table with my chest cut open and the surgeon removing the inflamed lining around my heart, because my Crohn's had suddenly escalated to a major extra-intestinal manifestation by attacking my pericardium. Today I'm happily on much stronger medicine - Stelara injections. The Stelara has worked, and my disease is well-controlled with no side effects. As I said, I just wish I had started it sooner.

So now I have a big scar down the middle of my chest to constantly remind me of my folly.

 

[Scipio]

How to pay for the expensive biologic drugs is another issue entirely. If you are located in the US, the two key factors will be your income and your health insurance.

If you are very rich, you will have no problem getting the drug. You are rich after all. If you are very low income with low or no health insurance, you also will likely have little or no problem getting the drug, because most of the drug manufacturers have special programs to provide the drug and very low or no cost to those who cannot afford them. But if, like most Americans, you are somewhere in the middle, it all comes down to your insurance.

If you have a decent employer provided insurance policy that will cover much of the cost, again the drug companies often have special programs to cover the gap that your insurance doesn't pay - leaving you with only a modest copay. If you have federal government provided health insurance such as Medicare or Medicaid, the issues are more complex, since the government will not allow those drug company supplemental programs to be used with their insurance. They consider those programs to be a form of a barely-legal kickback in which they refuse to participate. Nevertheless, something usually can be worked out, depending on your circumstances.

 

[jadegreen]

How to pay for the expensive biologic drugs is another issue entirely. If you are located in the US, the two key factors will be your income and your health insurance.

If you are very rich, you will have no problem getting the drug. You are rich after all. If you are very low income with low or no health insurance, you also will likely have little or no problem getting the drug, because most of the drug manufacturers have special programs to provide the drug and very low or no cost to those who cannot afford them. But if, like most Americans, you are somewhere in the middle, it all comes down to your insurance.

If you have a decent employer provided insurance policy that will cover much of the cost, again the drug companies often have special programs to cover the gap that your insurance doesn't pay - leaving you with only a modest copay. If you have federal government provided health insurance such as Medicare or Medicaid, the issues are more complex, since the government will not allow those drug company supplemental programs to be used with their insurance. They consider those programs to be a form of a barely-legal kickback in which they refuse to participate. Nevertheless, something usually can be worked out, depending on your circumstances.

Thank you for sharing your experience. That's just what I've been afraid of: side effects of the drugs. I have always been "that person" who ends up having the rare to almost-unheard-of reactions to drugs. I don't know what it is about my body, but that's how it's gone. So yes, I'm afraid of taking a drug that's supposed to help me only to get a drug-induced illness that I also have to deal with for the rest of my life--and I have kids to take care of. That's why I hoped I could manage it with diet, but it's just not working for us right now.

It's encouraging to hear that Stelara is working for you. One of my brothers also has Crohn's, and he has been on Remicade for over a decade. I'm not sure he's in great health, but I'm also not convinced he takes good care of himself, either.

And yeah, we are in that middle area where we don't have a ton of margin, but we aren't low-income. So, it's extremely disappointing. We moved across the country for a lower cost-of-living and a better job, and now I'm afraid the margin we got by making that life-altering move is probably going to go to my medication. I feel terrible for my kids and for my husband--who keeps telling me it's all going to be fine...and it probably will be. I think my problem is that wish I had ACTUAL NUMBERS in-hand already so we could start to problem-solve. The unknowns are almost worse than the knowns.

 

[Scipio]

I think my problem is that wish I had ACTUAL NUMBERS in-hand already so we could start to problem-solve. The unknowns are almost worse than the knowns.

You can get some reasonable estimates by looking on your insurance policy's website to find their formulary. This will be a list of all the drugs they will cover and the conditions they impose on their coverage. You can see which Crohn's drug they will cover and at what percentage of the list price. (The list prices are obscenely high, but most patients end up actually paying far less than that.) You may need to contact their customer service and have a discussion to confirm what percentage of the list price they will cover with your particular policy.

Then you can contact the drug company(ies) to see whether your policy qualifies for their assistance program to cover most of the copay. When I was on my employer-provided health insurance, the list price for one 90 mg dose of Stelara was about $30,000. After applying my insurance coverage and the manufacturer's copay assistance, my actual out-of-pocket copay was $5 per dose.

A dose of medicine cost ranging from $30,000 down to $5 is a vivid example of just how insanely screwed up the medical health care/health insurance racket is in the US.

 

[my little penguin]

Med wise
Stelara is only $5 with the copy card every 4-8 weeks
Remicade is priced higher from a copay since it goes through medical
Humira copay card about $5-30 a fill