Community Forum

So, I have been fighting a Crohn's flare up for almost a year and a half now. I was diagnosed at age 8 (I'm 25) and have had 3 prior surgeries with great results. I haven't had to have any sort of colostomy bag or pouches yet.
However this last flare up has killed me. I lost my girlfriend of 4 years as she couldn't put up with me being sick on and off. I have almost lost my job. I had to move in with family so I can get better without having to worry about bills etc...At least I have that as an option.

So I am sitting here in the hospital and all of the doctors are telling me that surgery is a last option and there is other stuff to try. I have been on prednisone this while time, tried rhemicade, I'm on Humira injections, enticort, and they want to put me on Immuran again. Im jsut telling them that I Have had enough. There is like 7 inches of diseased colon that can easily be removed. After my lasy surgery I was symptom free for 8 years, and those were my non healthy college days. So I figure if I have surery now I can squeak out a longer remmission with my healthier lifestyle.

Im jsut really frustrated, and I have lost everything that I cared about. Just looking for people to talk to I guess, best of luck to everyone!

 Reply posted for steph821.

Steph, 

Thanks for your message and well-wishes.  I guess I got lucky.  I just found out that my Social Security was approved.  I only waited 5 months and was approved right away.  I used to write grants for a non-profit and I think this experience helped me out a lot in filing out the application.  I'm actually thinking of starting a small not-for-profit to help people with their paperwork when filing for Social Secutiry.  Like you, I'm in a ton of debt and still trying to figure out how I'm going to get myself out of the hole once I start getting checks. I'm being sued for $400 from my hospital.  I ticks me off because they have billed my insurance company over $200,000 in the past 18 months.  You'd think they'd be happy for the business and not squabble over the $400.

I had an ostomy and I should be getting my take-down done in about 4 weeks.  I so hope that it goes okay because I NEVER want to go back to the bag if I can help it. 

Best wishes to you Steph and I hope you continue to help folks out on this site as you have really good advise.

-shawn

 Reply posted for ucshawn.

Hi, I see your post here a few times, and thouht I would write, I hope you surgery went well, did you have a resection or ostomy? About the disability , it took me 2 years fighting in the court system to get it but I funally did not for the SSI but for the madical insurance see I was 17 when diagnosed and no insurance company would give me a ploicy because they considered it an existin contdition, SS automatically denies people the first 2 times, this is to weed out some of the folks.polotics basically, so keep going fo it!!! The more records ,missed days from work,firings for it and medications records you can find keep them as this helps immensly not to mention the bills, here I was a new adult and already in 50.000 debt CRAZY, it has been 23 years now ans while things dont get easier you learn to adjust the best you can, I would lov eto write a book called "surviving an ostomy" and yes the hospital stories are funny but sad too!! Hang in there, Steph

 Reply posted for ryencool.

I think it was smart to stay in the hospital until your op.  It will certainly help your recovery time if you don't flare up right before your procedure.  The duladid (sp) is good stuff.  I think they gave me 5 mg after surgery and then you'll have a catheter in your back releasing pain meds too.  I'm only 5'1" and 100 pounds so they may give you more or less depending on your body frame.  My nurses kept me very comfortable...so comfortable that it took three of them to wake me up after having slept for two days straight....You'll be fine and i'll be thinking about you on your surgery date.

best,

shawn

 Reply posted for ucshawn.

Thanks for the reply, just found out today that I will be having surgery on tues during the afternoon. I am somewhat excited as I have been fighting this flair up for over 15 months now. I just know the next two months are going to be not so fun, but I have family here to help me out and a nice new house to stay in.

After having three roomates over the past two days I am starting not to feel so bad about my situation. We need to start a board with interesting hospital stories as I am sure we all have atleast a couple.

They gave me a choice of going home for a few days before the surgery but I dont want to chance getting a bad flairup and having to push the surgery back so I am staying here for a few more days, boo. I'm also scared that I have been on 2mg of dilauded for so long that I might not get relief after the surgery. Anyone have experience of being on a higher does than that? used to work fine for me, but not anymore. Wish me luck!

 Reply posted for ryencool.

I know you've heard this before but please try and keep your head up.  It does get better.  I can only imagine what you are going through given that your significant other is not around to be supportive. Bless your heart.  I also understand the financial burden that you must be under.  I've been trying unsuccessfully to get disability and it has been very rough to try and heal while worrying about bills.  There should be a federal endowment for people with Crohn's and Colitis.

I used to live in ATL and the good news is that you are amongst some of the best physicians and medical facilities in this country.  after you get well, I'm sure that exgirlfriend will come crawling back.  Then you can decide whether or not you want to kick her to the curb or not!

E-mail me at shawnmjackson@comcast.net if you ever find yourself down with no one to talk to.....

best,

Shawn