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New Here but not to Crohn's

T

theatherly

Guest
Hi everyone. I first want to say thanks to Michael for inviting me over.

My name is Tonya and I just turned 26 on 9/6. I was diagnosed with Crohn's 12 years ago. It was found by accident. I had been having alot of abdominal pain and went to see a gyn doctor. They found endometriosis and a ovarian cyst. I went in to have surgery for that and they discovered a adhesion in my abdomin that was 8 inches long and 1/2 inch thick. The doctor said it was like a piece of wood in my stomach and that if I had been punched in the stomach it would have caused serious damage. During that surgery they noticed the inflamation on my intestines.

I went for more of your standard diagnostic test and was confirmed for Crohn's after a colonoscopy. I had my first bowel surgery shortly after that and had 12 inches removed including my terminal illeum, some large and some small intestine.

I did great after the surgery. All of my pain and symptoms went away completely without the need for any medications. Then in 2002 I went on vacation to California in October. I started feeling bad but still doing ok. The day after Thanksgiving 2002 I was doing the mad dash Black Friday shopping when suddenly I couldn't move without excruisating pain. I went to the ER and was treated for a blockage. I had more testing done and in Jan 03 I started Remicade.

I went and had my first Remicade treatment and several hours after coming home I began vomiting uncontroably. I was rushed back to the ER and admitted to the hospital. My GI said that my body was rejecting the Remicade and that I needed surgery. Two days later I had my second bowel resection this time removing 15 inches. I stayed in the hospital for 2 weeks. I went home and was there for 2 weeks when I became sick again. I was admitted to the hospital again and had my gallbladder removed. After another 2 week stay I was sent home.

I started taking Remicade regularly and was doing great. In June of 03 I found out I was pregnant with my first child. My pregnancy went great and I was able to continue to take Remicade treatments. My son was born 4 weeks early in Jan 04. Within weeks of him being born the Crohn's flared with a vengence. I have been sick ever since.

I took 15 vials of Remicade every 4 weeks from Feb 04 till April 06. The hospital over charged for the treatments ($50k each) so I have maxed out my medical benefits. The insurance company will not investigate because its not higher than "usual and customary charges". The hospital recieved almost $800k in insurance payments for my Remicade in just over 2 years!

I'm still having alot of trouble but with no health insurance I'm unable to seek treatment. I need to have surgery again because I didn't get to properly heal due to becoming pregnant .. so it's like I never had the surgery to begin with.

I have a port a cath in my chest that I am trying to learn to flush at home too. I know that I've left alot of info out but thats a great overview of whats happened with me. I have dificulty keeping a job because of the constant bathroom trips.

I'm glad to be here and I look forward to getting to know everyone!
 

mikeyarmo

Co-Founder
Tonya,

Thank you for taking accepting my invitation :). I can not believe that the hospital would overcharge you like that! That really is disheartening. Hopefully things will improve though on their own (it has happened before).

Anyways I am glad you found us and look forward to havinga new addition to our family.
 
V

Valentina

Guest
HI Tonya, welcome to the group. thats rediculous about the remicade charges. I dont suppose if you "threaten" to go public or let them know you will request some sort of free legal support (if you can find it.. not sure where your from) that they might be more willing to look into things.
you would think you have a right to ask them to look into something if it means you have no coverage.

so are you not able to get remicade then I assume?

Im also on remicade, and had no insurance so I go through "remicare" its finacial help from remicade, you might want to look into that. Im not sure where you live, but in Ontario Canada I also use "trillium" and they cover all of my drugs after I spend a certain amount (my deductable, depends on how many family members and your households total earnings) and thats has also helped a lot.
sorry for rambling :) hope any of this helps.
And I hope you get it all sorted out and can some how get your treatment.
 
T

theatherly

Guest
My GI has taken me off Remicade because it's not working for me anymore. I'm seeking an appeal on the insurance but I'm not optimistic.
 
Aloha Tonya, and welcome, from another newbie. Hope you get the insurance stuff worked out soon and can get some good, affordable care.
 
S

Skinsfan1229

Guest
What about double-ing up the dose to 10mg per kilogram have they tried that? Any can I ask how they diagnosed the endometriosis before the surgery?

Well welcome to the forum, sounds like you've had your share of surgeries and been through the ringer like some people have here, your right at home!
 
T

theatherly

Guest
Skinsfan1229 said:
What about double-ing up the dose to 10mg per kilogram have they tried that? Any can I ask how they diagnosed the endometriosis before the surgery?

Well welcome to the forum, sounds like you've had your share of surgeries and been through the ringer like some people have here, your right at home!

I was taking the maximum dose that my GI prescribes.

As for the endo it was discovered after they started the surgery. The inital operation was for the ovarian cyst and the endo was discovered while they were removing it.

Thanks for the welcome and I look forward to getting to know you all better.
 
K

Kossy

Guest
Well welcome and best of luck to you and hopefully you'll get insurance soon.
 

Karen

FRIEND 4 1 & ALL

I pray that you have a good time ... meet lots of folks & have a great time here with us. I am GRANDMA BEAR aka KAREN. The group here let me in due to the fact that my husband is the one with CROHN'S & the support here is wonderful so have a great time !!​
 
A

andilynn09

Guest
Good luck in your appeal, but even moreso in finding something that will make you feel better... and soon! Welcome...

Just out of curiosity, how much is remicade supposed to cost - do you know?
 
X

xrayzerase

Guest
hi tonya-welcome. i am pretty new here too.
i was just diagnosed with crohn's a few weeks ago (mild) and am on pentasa and entocort.
thing is: i also have endometriosis. about 7 years ago i had a myomectomy to get rid of 2 large ovarian cysts (one on each ovary) and very large fibroids. the fibroids played havoc with my bowel and bladder. i also have adhesions. in fact--for many years-i thought it was because of these adhesions and having had such large fibroids/cysts (as well as the endometriosis in general) that caused my diarrhea and even my bad heartburn. i went to several drs-but it was the colonoscopy that diagnosed the crohn's (in the terminal ileum)
anyway..you have been through a lot-and-sorry about the $ stuff with the remicade. i really hope something is found to help (besides surgery after surgery) i can't say i know what i am talking about-as this is all new to me (crohn's) but-i do know how awful endometriosis can be (and mine is relatively mild--no major bleeding etc) i am just wondering where/how some of this stuff may relate...not that i am a dr...(i have been on the pill for years to ward off ovarian cysts though..and so far so good...but-the pill-for 7 years-has caused its own messes..) (oh well..)
anyway-welcome..
andrea
 
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