Why do we (Crohn's colitis patients) have to deal with so much SH*T

[corker77]

Pun intended in the title. So I go for my pre-op appt today (the 19th) my surgery is the 25th (less than a week away-obviously) and the nurse tells me insurance won't cover my surgery -" It's not a medical necessity", says the insurance company! HELLO!?!? By the way the surgery I'm having-or not- is an ileostomy. I've already had a total colectomy with an ileorectal anastomosis April 2010-but now I need an ileostomy due to my "shortened" digestive tract and fecal incontinence. Plus the pouch will bypass the anus and rectum giving my horrible fistulas a chance to heal a bit. My surgeon actually told me that whoever he spoke to must have truly been an idiot because she didn't seem to get pooping your pants, and all over yourself isn't okay. The suggestion from the insurance agency is return to my GI and get treated for that. What the hell? I have taken every medication my doctor has to offer over the past 10 years, and all of them have been exhausted, leading to the colectomy, and now the ileostomy. Does anyone ever want a pouch if they have a better option? Like it's cosmetic or something. As a crohn's patient I am always being questioned and made to prove how "sick" I am-or if I'm "sick" at all. From my diagnosis, I fought for with my life (literally), until now with much needed relief from surgery. Now I have to wait to see IF I will even get surgery, let alone on the 25th. I NEED SOME PEACE OF MIND! I've had some many people (myself included) rearrange schedules on behalf of my son's care (he's 4), and mine. They did this months ago in preparation of my surgery. This is a living hell for me...when will it end??? I just can't relax since I returned home from the Dr. This is a huge life altering surgery for me, I've finally accepted the idea of all that comes with this surgery and I was really excited about it, and optimistic for a better life, to start living again, for me & most importantly my son. I called the insurance agency when I got home and it takes 15 days to review this case...I don't think I can wait or stand this frustration that long. It may only be a different surgery date, but it is SOOOO much more than just that. This affects more lives than just mine, and I can't afford the surgery to be moved even a couple of days, why should I have to! This has been scheduled for months, HELP!!

 

[Jennifer]

God I hate insurance companies so much. They'd rather people die than have to pay for anything. First thing that pops in my mind is a lawyer. I've used one in the past to get back my SSI. There are lawyers out there who do free consultations and maybe they might be able to shed some light or give you better peace of mind or at least may have an idea of what course of action you should/could take.

That's a hard surgery to have to accept especially when you have children to care for and to have that taken away by the insurance companies is just... well... there really aren't any words in my vocabulary that really describe how it feels. I mean mine has refused medications for me before which made me sicker or now refuse to treat certain things like psychotherapy and you have to jump through their hoops to get what you want but this, a refused surgery, I'd get on someone's ass right away. Insurance companies hate lawyers and they hate the media. That's all I know. Do what you gotta do to get better and go over people's heads by getting in tough with the higher ups if you can.

 

[ameslouise]

Well that is really f&*#ed! You finally get your mind wrapped around it, get all the logistics worked out, and some pencil pusher pulls the plug on your new life!

I would ask the doc's office to work it out with the insurance first and see if they can recode it or something so that it is medically necessary. It could be a simple paperwork mistake.

Good luck - I hope it all turns out okay.

- Amy

 

[MADiMarc]

Okay, this is really messed up!

Question: is your insurance through you or your partners work? I ask because I had a situation kind of like this. My husband carries the insurance. They would not pay for meds. We jumped though hoops every month. We got fed up & my husband went to HR department. They picked up phone and said pay it. Problem solved. Now, my husband works for a very large company. Just a suggestion.

I feel for you. I do not understand why when you payremiums in good faith they would mess with you like this!

Good luck,
Michele

 

[corker77]

Thanks everyone! It just reinforces what the surgeon said also- that he's never had this happen to any of his patients before, or even heard of it for that matter. I am a single mom so it is my own insurance (not a partners).Like I said too,it's not like it's a desirable surgery- yes I want it to feel better, but it is a last resort. I'm calling around tomorrow-I don't know who I'm gonna call yet, but I'll start with the insurance company again- it's maddening that this "mistake" could get this far & for me to be totally oblivious about it so close to the date of my surgery. Someone messed up either way, I should have been informed directly, not through the nurse less than a week before surgery. If I hadn't had my appt. today (which happened to be a rescheduled check-up/ pre-op appt. due to the surgeon being held up in another surgery on the original date)than what? CRAZY STUFF!!! So emotional-I just can't focus on what to even be upset about the most. I do feel better though just knowing I'm not the only one who thinks this is so flabbergasting.:ymad:

 

[MADiMarc]

Serious good luck.

 

[Lisa]

One thing to check into - if you have split coverage -like I do - I have United Healthcare for most things, but Blue Cross picks up hospital stuff.....in the past I have gotten denied by United HC, only to find an approval letter the next day from Blue Cross.....

 

[corker77]

No split coverage, but thanks for the idea

 

[Sue-2009]

Okay...here is what I would do...This should work. SHOULD, call your insurance company. As to speak to someone regarding this surgery. Ask to whom you are speaking, with...write their name down, ask them the date and time. Then ask to speak to the manager..Write their name and date down. Thank them for their time, and tell them that you are going to have to call the insurance commisioner...That this seems unreasonable that there is no coverage....Let us know what happens...Good luck..Sue

 

[Grumbly-Guts]

I hope you can get this figured out. It is really really infuriating to hear about this stuff happening. Thank my lucky stars sometimes I live in Canada.
I can't even believe insurance companies can do stuff like that!!
My fingers are crossed for you and your surgery, I hope everything works out for you.
Squeaky wheel gets the grease!

GG

 

[corker77]

THANK YOU EVERYBODY who posted-I was very persistent with everyone I could get a hold of by phone and/or email and it worked!!!! They didn't have me go through their standard appeals, and now I'm approved. The hard work paid off! I wouldn't have been sooooo driven to correct this had I not received your posts! Usually I doubt myself, and just figure the other "side" is right, but not this time (and it feels great!) All your shock and disgust about the matter just reinforced my own shock and disgust and that I clearly wasn't just being hyper -sensitive. Now I'm ready for surgery Tuesday, and VERY content!!! What a huge relief!! I'm so ready to start living again. Everything happens for a reason-and that is how I look at life

 

[Grumbly-Guts]

Yay Corker!! Congrats on getting it figured out, and I hope everything goes well with surgery and your recovery. Keep us posted. If there's one thing I really learned since I was diagnosed is we all need to be our own advocates.

GG

 

[Lisa]

YAY!!! Glad to hear you got through to the knucke-heads!.....just make sure you get it in WRITING!.....

Good luck with the surgery!

 

[tiloah]

Yaay! Hope you are feelin' better soon. The only thing that worked for me (getting my Humira covered) was getting the insurance commissioner involved. (My MiL was able to talk to the senator somehow). When they spoke recently the senator told her a LOT of people with our disease have been having trouble getting their "****" covered. This disease (and its treatments) are NOT inexpensive.

 

[Jennifer]

Glad to hear it. Let us know how the surgery goes.

 

[MADiMarc]

Yes!!! Gobs of good luck! Let us know how it goes for you.

 

[ameslouise]

Wow! That is great news! Good luck with the surgery tomorrow!!!

- Amy

 

[Sue-2009]

Yea!!!!!