New member, newly diagnosed.

Hello.

My name is Nicole. I am twenty-three years old, and after fourteen years of "indigestion" and "stomach flu" and hospital turn aways, I have been given the diagnosis of Crohn's colitis. I also suffer from polycystic kidney disease. (Genetic mess, no?)

I am currently trying desperately to find insurance that will take me, and at the moment, I am on no medications though I am still currently in the middle of a relapse.

So far over the years I was lucky -- sick once or twice a year. Being young and the severity being minimal in comparison to now, they never ran any major tests.
Over the past three years, though, the severity and frequency increased to the point that I was finally given the CAT scans and MRIs that I needed.

I finally have a diagnosis.

My ex boyfriend had UC (now he lives a full life with a colostomy bag) so thanks to him I know a lot of what I may expect, but I still feel like I need someplace to go to when I need a bit of extra advice.

Hope to hear from some friendly voices.

Nicole

Hi Nicole and welcome! I see you are from my neck of the woods-I live in Wellington Florida. My son is the one with Crohn's, he is 20 and presently going to college in Cambridge Mass. He is fortunate to have wonderful Crohns specialists out of Mass General-I know many people in South Florida who have been through the wringer for years with docs to get a definitive diagnosis.
You will find this community utterly supportive and a wealth of solid information.
Wishing you the best,
Ramona

crohnsmom said:

Hi Nicole and welcome! I see you are from my neck of the woods-I live in Wellington Florida. My son is the one with Crohn's, he is 20 and presently going to college in Cambridge Mass. He is fortunate to have wonderful Crohns specialists out of Mass General-I know many people in South Florida who have been through the wringer for years with docs to get a definitive diagnosis.
You will find this community utterly supportive and a wealth of solid information.
Wishing you the best,
Ramona

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Thank you very much. You are near, I'm in Fort Lauderdale.

It has been difficult finding insurance and/or a doctor to assist me in any way. Having two chronic illnesses under my belt thus far makes me seem untouchable to the medical community. I only finally got my diagnosis from a GI doc at a hospital after I had to rush in. Same thing with my kidney disease -- after many years, it was only found by accident after an MRI of my spine following an automobile mishap.

Thank you for the welcome! I wish you and your son the best as well.
By the way, if you know of any local Crohn's or Colitis groups, would you let me know?

Nicole

Nicole...
I'm sorry that you are struggling so much with doctors and insurance. What would you have to do to get state assistance? Is there anyway you could sign up for some college classes and then get health insurance from your parents? I'm not saying you'd have to take the classes but I know that's how some people have maintained health insurance.
Or maybe you can find a study that pays for all of your medications. This is something you can google. I've never done one myself but there are certainly and hopefully options out there.
Let us know what we can do to help you in the right direction.

Amy

Welcome Nicole. You'll find plenty of sympathetic and helpful folks here who know what you're going through.

butt-eze said:

Nicole...
I'm sorry that you are struggling so much with doctors and insurance. What would you have to do to get state assistance? Is there anyway you could sign up for some college classes and then get health insurance from your parents? I'm not saying you'd have to take the classes but I know that's how some people have maintained health insurance.
Or maybe you can find a study that pays for all of your medications. This is something you can google. I've never done one myself but there are certainly and hopefully options out there.
Let us know what we can do to help you in the right direction.

Amy

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Well, according to Medicare I would have to be considered disabled before being allowed insurance. I may be able to get on it soon, though -- I had a child three months ago, and I could be covered as well as her.

My mother cannot possibly provide insurance -- she is struggling with Disability and SSI as it is. The PKD (polycystic kidney disease) is genetic and currently ravaging her -- so I have been trying to get her help. She can't help me.

I will check out studies... just about anything would be helpful at this point.

Thanks for the welcome.

drew_wymore said:

Welcome Nicole. You'll find plenty of sympathetic and helpful folks here who know what you're going through.

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Thank you very much. So far, it has been good here., and full of useful information. I look forward to facing this with the help of the people who 'get it.'

Nicole