A little scared

[KellyJellyBelly]

a little scared

Ok. My name is Kelly and I live in California. I was originally diagnosed with UC when I was 16.. said it was Pancolitis. I has a flare up that lasted six months or more. I was in remission. For about nine years..IT WAS GLORIOUS!!! although when I was 23/24 yrs old I had another severe flare..and after months of arguing with dr after dr. I got back on prednisone and asacol. Have had flare ups every year since. Recently I have had another severe flare up but I don't have med ins. So I tried to just get meds in the ER ..BIG MISTAKE. It didn't work. I eventually paid cash to see a GI and had a scope done about four days ago. The dr said " its crohns and its bad". He put me on azulfridine although I had an allergic reaction .. waiting to hear from him now. Worried about my risk for cancer and the possibility of surgery.

I also have to admit that as a young woman, this disease does alot to my self esteem. I definately don't feel pretty and I find it uncomfortable to wear certain clothes. I realize some if my concerns are vein. But they are very real to me...

Someone. Who just wants to feel normal,
KELLY:shifty-t:

 

[Keona]

Hi Kelly
sorry you are feeling so crappy. I dont think its vein at all ..
I hope you hear from your doctor soon. I have done a lot of reading about Crohns and chances for people to have surgery with Crohns is high... almost a given at some point of their life. I have heard that it helps a lot of people for the most part.

I hope you hear from your doctor to get some medical help
I can relate to wanting to feel normal
Take care
Wendy

 

[Awbrey]

Hi Kelly,
Sorry that you are going through all of that :-( I hear you about feeling normal and pretty, sometimes my tummy is so bloated that I feel like im 8 months pregnant :-( It is a bad disease. Im happy you joined the forum there are some good people here and great ideas. I don't have any insurance as well :-(

 

[Bayoucrohn's]

Welcome Kelly,
My story is somewhat similar to yours. I was diagnosed with Crohn's at 12 and had a resection on my small intestines. I went into remission till I was 23 and Im 25 now. The past three years I had two more resections of my large and small intestines and an abscess removed. When it comes to feeling embarrassed, I have develop an attitude in which I could care less what anyone thinks. If I were you, I would definately apply for MedicAid. Good Luck!

 

[KellyJellyBelly]

What is medicaid?

 

[bruscar]

Hey Kelly,

God your medical system sucks ! . . not that ours is any better here in Ireland.

Anyway, you are entitled to feel pissed off and upset because it is unfair and a real kick in the ass to have this disease but . . . . we got to deal with it and keep on smiling.

This forum will allow you to vent as much as you want,so let it out girl !!

Just keep on fighting or the disease wins, and none of us want that.

I am sure you are pretty, and remember, real beauty goes deeper than the skin !!


Big Hug and best wishes

Bruscar

 

[Swirl]

At first I had to pay out of pocket until the hospital kind of made me get medicaid lol. It paid for around $13,000 I had before I got it and every bill after. While your condition is out of control you'll feel awful and think a lot. I just started losing blood again where it affects my breathing and it got me depress again. Only think that's worked for me with no side effects is probiotics but now I have to find a new one for the 3rd time because it stopped working. I'm trying to save up and relocate to florida and start living but look what I got to deal with! I guess most or all of us here have been in bad situations. Don't feel alone. We all living life hard...

 

[Bayoucrohn's]

MedicAid is Government program that pays for medical bills for low income individuals

 

[KellyJellyBelly]

Thanks everyone for the encouragement. I have been looking into the specific carbohydrate diet.. I guessit gluten free.anyone heard of it or tried it?? Just something I came across and thought I would try it... a little desperate ;P. .. also I am going to look into medicade sounds really awesome. Again thanks everyone for your support.

KELLY

 

[vickyhunter]

I get the shooting pain from my waist to my legs kelly! It hurts so much!
It's one of the signs I know its a Crohn's stomach pain and not just a cramp.
I'm 19 so I know how you feel in everything you've said. It really does affect self esteem sometimes. I, like you, get up and put makeup on, do my hair and try to face the world when I'm ill and try to be strong but sometimes it just gets the best of us!
Hope you eventually get it under control and go into a long long remission
xxxx

 

[Sha0913]

Hey Kelly, if you have bills from the hospital that you can't pay, you can also go to the hospital financial office and apply for charity care, they will go back about a year, and cover bills. and definitly apply for Medicaid. I know how you feel and as you get treated and start to understand your disease better it seems to help you understand how to make yourself feel better. I make sure on my days I feel the worst to get up, get dressed up, even if its just for me, do my hair and make up and it makes me feel much better. I try and find clothes that fit my body at the time, bloated, steroids sweeling or crohns waif, and enjoy my Crohns curves, thats what I call the bloat or swelling or my days that I can pull off skinny skinny jeans. Hope this helps a bit. Shannon

 

[Jer's Girl]

Hi Kelly! I can relate to this disease hurting your self esteem from time to time. I agree that sometimes just the act of putting some effort into your appearance reminds you that you really aren't the diseased monster woman you are imagining you are. I really relate to what Sha said about your weight going up and down! Mine has been crazy this year, depending on my illness, both up and down (currently up). Ultimately, You just have to try to be as healthy as possible, and take care of yourself the best you can, and just try to accept yourself for who you are. Remember, we are not body's with souls, we are soles with body's. You are who you are no matter what you look like.

Welcome to the forum!

 

[KellyJellyBelly]

I woke up today feeling a little queezy, but determined to put my thoughts on areas of gratitude rather then this deal ( literally). Im going to get ready and do something productive and make an appointment.at the salon for some pampering. I might even attempt to get on the treadmil and work off some of this steroid weight... or at least try. I find it really comforting to talk to women with this disease, as I originally thought only old people got these issues... I see that's not the case. Have a blessed day everyone. Thanks. For your comforting words the have made a difference.


Determined Kelly

 

[ameslouise]

Hi Kelly and welcome!

I'm surprised your doc put you only on Azulfidine if your Crohn's is "quite bad." I would think he would want you on steroids to take down the inflammation until you can get on a long term maintenance drug to induce remission.

BTW, prednisone is CHEAP and helps quick. There are also assitance programs for drugs like Humira offered by the mfr that you might qualify for. I would ask your doc about both of those.

Vain? We all go thru it. I am just coming to the realization that half my wardrobe is going out the door since I got my ileostomy bag, and I'm quite pissed about it. We all want to look good, even if we can feel good!!

Hang in there! - Amy

 

[KellyJellyBelly]

Amy I am on prednisone 60mgs a day and then I begin a tapper in two wks. Im really scared of surgery. Thanks for the information regarding mfr that's really interesting and good news.

Thanks kelly