So like I have said before, I had tons of bleeding starting in august. I got an appointment for Oct 23rd with a colorectal surgeon. About a month ago, the bleeding became too much and I was told to go to the walk in clinic since I didn't want to go to the ER because it wasn't life threatning (I avoid the ER at all costs). I went to the clinic, and they decided to tell me THEN that they don't treat anyone under 18 there. So, fine, I went to the ER. First thing the doctor says to me is "You looked depressed." NO, REALLY?!?! You would be too, sir, if you had to deal with these doctors. They gave me fluids and sent me home because there was "nothing they could do but give me a follow up with a GI." So I got a followup with a new GI some 9 days later. I was excited to finally get this fixed. Lahey calls the day before my appointment and tells me it's been cancelled. Ok. Back to square one. Oh well, I move on. I await patiently for the 23rd. I go to lahey, once more missing a day of school, and guess what? SHE CAN'T TREAT ME BECAUSE SHE DOESN'T HAVE MY RECORDS FROM UMASS. Now honestly, I've had this appointment for TWO months, WHY wasn't this done prior?? Why even waste my time?!?! Finally, FINALLY, I had an appointment today with an even newer gastro, me and her got along beautifully. She listened to me, took my suggestions seriously, and agreed upon a treatment with me. Everything was fine and dandy. So I drop off my prescription for Xiaxifan, order that new probiotic called Align, and guess what? Pharmacy calls! My insurance doesn't cover Xiaxifan! So we either pay $780 for the three prescriptions, or hope to god theres a generic that my insurance covers, or well, I'm s-out-of-luck.

FRUSTRATION!!!! argghh this is so hard to deal with when absolutely nothing works out!

Not to mention that my college fund just went to my mothers new house in my parents divorce settlement. $350,000 so she can buy a house for her boyfriend and his kids. Awesome. Thanks mom! Not like I wanted to become a doctor or anything....

Chelsea,

Reading your post touched my heart. It sounds like you have had one thing after another thrown at you. In a very small way I understand when nothing seems to be going your way. It amazes me that a mom would choose a house over a daughter. I don't know your relationship with her, but it sounds like she is running away from the issues and herself. If that is true she will be running a very long time, because it never works that way.
I will be praying for you to have the strength to get through all of this. I know that God is at work and doing something in your life. It is very hard to go through the fire, but one day you will be able to look back and say wow! that's what he was doing.

My Prayer for you today is for healing and strength to get through this time of pain, confusion, health issues, and your relationship with your mom.

I know that it will get better just hang in there.

I would also put a call into your new doctor and ask about samples or if they know of another option regarding costs or types dealing with these new drugs.

Chelsea, I really am lost for words! I know what it's like to be constantly chasing your tail with the medical world but the rest of the crap in your life has really left me speachless!

I wish I lived on your side of the Pond because if I did I'd adopt you and look after and cherish you like a mother should.

I really hope that you get that break soon. Hang in there Hun. Come here to let off steam whenever you need to. We're here for you in spirit if not in body, which seems to be more than your own mother is....

Luv & hugs

Shell

I'm sorry to hear that the meds you need aren't covered by your insurance company....they truly are the ogre's of the world! It's amazing to me that ins companies are so brutal with what is in their formulary and what isn't! Obviously, there are reasons your doctor want you to have this specific med! Can you and the GI request a review to have it covered? As you have tried so many other meds perhaps? As far as going to see a new MD without having a copy of your old records in your hand...that seems beyond me. Why, with all the crappy luck you've had, would you not hand carry a copy of your old records with you to a new MD? Just a thought... As far as your birth mother is concerned...never mind...not worth my time or seems like it is she worth yours. I'm sorry sweetie, you deserve someone who loves you and cares for you. Sounds like the new GI you finally met is the one for you though! I'm glad to hear that part of the story!

If there is no generic, I would suggest you get a letter from your doctor stating the med. is necessary for your treatment and that there is no alternative. Send the letter to your insurance company appealing their decision. You can always file a complaint with the State Insurance Commission. The insurance company is required to respond.

I have to say that all in all you sound very together for a 17 year old. I am impressed. Who is there for you?

Lucy

Hey Chelsea,
I'm really sorry to hear that you're having such a tough time. It sucks when not only don't you feel well but you have to go through so many frustrations dealing with doctors, costs, meds, etc. I hope you can find out how to get your meds payed for. I hope you feel better soon. I think you're very brave and strong!
Hugs

Hi,

I suggest that you get a letter from your doctor explaining the 5 W's (Who, What, When, Where and Why) for Xiaxifan. It is quite common med for us pouches, so I honestly think that an agressive appeal to the insurance company will do the trick.

You can also call the GI and explain the situation. Maybe there is a sister drug (very similar) that IS covered by your insurance that she can prescribe.

Best of Luck!

Dealing with medical stuff - stinks!

Hi Chelsea,

Sorry about all you are going through. The Xifaxan usually isn't covered for pouchitis as it is new/very expensive and only approved for two short-term conditions (traveler's diarrhea and something else....) so they don't approve for this high a quantity and long-term. We went through all of this with my husband and it was VERY frustrating! However after many appeals with documentation from the doc (why he couldn't take Flagyl and Cipro, the two drugs of choice for pouchitis - which they thought he had) we finally got it approved. Although then they only approved it at 1/2 of his dose! So we went round and round again and got it fully approved; by that time he didn't need it any more. But with your doc's help (mostly a good nurse in the office you need to be really nice to and get in your good graces) you should be able to work with the insurance company to get it approved. It just takes a lot of persistence. Don't accept the first, second or third denials - just keep appealing.

There is no generic to Xifaxin as it is new so if that is what you need/what helps best, you'll need to get them to cover it or pay out the a** (no pun intended). I know it's just an added problem in the middle of being sick and really stinks. I'm sorry you have to go through this. I hope your doc can help and you can get your insurance company to break quickly. Good luck!

I've been on both flagyl and cipro and they honestly didn't do anything. I felt no different. So this is really the last resort. We are going to file an appeal and try to get it covered. I think we've got a pretty good chance because there are no alternatives and my doctor is behind me 100%.

Thanks everyone for replying. It's not pity I want, I just wanted someone to agree with me so I know that I'm not being selfish or ridiculous.

It just kills me to think of these big corporations. If I was their daughter...they would jump over mountains to fix this. But they won't, because I'm just another number. I can't stand American healthcare.

You're definitely handling this extraordinarily well!
My prayers are with you that everything works out, in all difficulties.

Ditto what Shell said! You poor thing, there has to be a break in this crappy luck you've been having. I hope the fact that your doctor is completely behind you on this will make your insurance company change their behaviour and cover the meds.

As for your college fund: can your mom do that legally? Could your dad ask his lawyer about it?

Yes, my mom can do that legally. They were married for 21 years, so she gets half. We sold our other house that my grandfather was living in, and we had always planned that that would be my college fund. Well, turns out, thats exactly half the worth of the house, so she took all of that. Thats not even counting half my dads stocks, retirement, company, allimony, etc. I think its safe to say she made out pretty good. Oh well, atleast she's happy. Thats all I really can say at this point.

I feel your pain and problems still deal with it myself and have dealt with the medcial field and problems since birth .Anyhow I do not go to the ER anymore w aht I do is find a dcotor who will talk to me when I need him/her or someone that is close to him which I do have now .

The er is a waste of time unless your dieing they make sure your alive and send you on your way so I never bother anymore that days that are rough for me I get a hold of him or a person that can tell me what to do and do what they ask. Most of the time they get a bed rdy for me skip the er process and bam the they get me comfortable and do the right tests and er does the normal life threating stuff which most of us pouchers do not need.

My advice to you is find a doctor who will really really work with you which I know its gonna be tough beleive me but thats all I can tell you if anyone has been through alot it has been us pouchers and I been through alot since I the day I was born so I have learned a few tricks and what to do get through through to doc, medcial people etc if you want to know more or advice please pm me and there is to much to post as I would like to help anyone I can because none of us should have to through this .
Myself still going through it about to back for a redo and much more but hey they try and make me feel comfortable I will say that much oesnt help alot but they try where I hear alot of people post and say how docs ignore them etc I would of leftthat doc along time ago. Anyhow good luck