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Hi everyone, newbie here from Vegas with U.C of 14 years :(

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Posted 7/13/2011 3:56 AM (GMT 0)
Hey everyone..My name is Brett and I'm 27 years old and have had U.C since I was 13. I even remember the day I was diagnosed, October 18th. I was in remission until I was 18 and have been out of remission ever since then. The best part? No medical insurance and no medicine. I haven't been able to see a Doctor since I was 18. Every job I had was part time so I couldn't get benefits. There were a few times when I would go to the emergency room but they would do very minimal to help so I don't consider that me 'seeing a doctor'. I am originally from Connecticut, moved to Maine until I was 18 and then moved back to Connecticut. I have traveled up and down the east coast and decided to move to Florida in July of last year. I got bored with Florida and then moved here to Vegas in May of 2011 and in a way I regret it because it is SO hot!

I hate having this condition, because of it I had no teenage life. I spent my birthdays, thanksgiving and christmas in the hospital. BUT at the same time, it has also made me the person I am today. I'm currently doing an internship with Department Homeland Security Counter Terrorism and once I finish my degree (bachelors, this year) I can apply for the Secret Service. I also fly and love to sky dive. I've overcome depression and suicide as this condition really puts you in a deep dark place for a bit. Yes, I can admit I have tried killing myself twice but each time found the strength to stop. It's been a long time since I have attempted and will never do that again. In fact I help teens who were in my shoes and show them that things do get better.

Anyways, I wanted to say hi and will be on here a lot as I never have met someone with the same illness as me. If you guys want, please feel free to add me on Facebook or IM me.

http://www.facebook.com/brettxw
AIM - Brettxw
Posted 7/13/2011 4:25 AM (GMT 0)
Hey Brett, Welcome! Happy that you found us. You will be very pleased to meet many others who are feeling the same way you do. This board has definitely been a huge support system for me over the past few years. I remember when I was diagnosed too, I had absoutely no clue what to expect and to be honest, the road has been a lot more difficult that I ever would have imagined.

One thing we can help you with is finding ways to get medication for lower cost.
http://www.needymeds.org/ has a pretty good list of medications and patient assistance programs that you can join for lower cost prescriptions.


Of course, it's always hard to find a doctor that you can work with who won't charge you an arm and a leg for a consultation.

You could also try participating in a clinical trial http://clinicaltrials.gov/ some of them are for drugs that are widely used but you have to see what you would be comfortable with. If you go for a trial, you may meet a GI you like that will be open to helping you while you're uninsured. I've been lucky because I've had 2 GIs and they both sympathized when I was unemployed and charged me very fair fees.

Have you ever tried any medication?

Wonderful to have you here. I am sorry you've struggled so much without insurance. Please let me know if I can help you in any way. I have been uninsured, I've ordered drugs from Canada, participated in trials, gotten by on free samples from the doctor...

Posted 7/13/2011 4:45 AM (GMT 0)
Thank you for information! Yes, I was on Asacol at first, which gave me pancrentitis (spelling), then Rowasa, then flagyl (both spelling) and it was not until I was on 6-MP when I was in remission. I refuse to go back on Prednisone, I will not get my chipmunk cheeks back! Now that I'm reading your signature...I get migraines every other day and I'm ALWAYS tired, I just assumed it was from the stress but those can be affiliated with U.C?
Posted 7/13/2011 5:30 AM (GMT 0)
Hi brettxw,

And welcome to the forum.

Yup, it's a tough life living with the UC. I can't even imagine what's it like without an insurance. You started very young, I was about 19 when someone decided that I'm going to have the UC. Like you, I was in remission after the first attack for years. It has been ups and down, but eventually things have improved and balanced out remarkably.

It was an eye-opener for me to to find - I think it was this board - this board years back. First time I got an idea how other people suffering from this disease are faring. More important, first time in my I felt I'm not alone. One is able to glean plenty of good information of the forum, but it takes some time and critical thinking.

notsosicklygirl provided great advice, so there is not much I can add.

Stress is a huge factor in my UC life, the main trigger and it has been hard to live with it.

Great hobbies. I quit flying years back but I've still stuck to sky diving, which I started at the age of 17.

Good for you with your degrees. Hopefully you'll get in to the department of your choice. One of my sons is in the same track.

I wish you all the best and speedy recovery.

P.S. I could not live in Vegas either :)
Posted 7/13/2011 5:43 AM (GMT 0)
hey brettxw! I'm 18 and was diagnosed when I was 14. I can identify with what you said about how you felt like you didn't have a teenage life. While my situation isn't comparable to yours at all (i'm lucky and thankful to have insurance), I can definitely relate. This stupid condition can just take up so much time and energy. And as much as I love all of my friends, it's impossible for them to really understand what it's like to have UC. And I'm not even comfortable talking about it with most of them! I feel like i'm spending a lot of my teenage years stressing over UC. Anyways, I just wanted to thank you for posting your story, it's always nice to hear someone else's story...it just reminds you that you aren't alone. I hope you can get insurance soon!
Posted 7/13/2011 12:11 PM (GMT 0)
brettxw,

It's good to see that you are finally in a place you like and doing what you want.

Not having insurance sucks, especially when you have a chronic condition like UC.

If you have a doctor you go to, and explain your situation, you can ask for samples. And then there are patient assistance programs, you can apply for so at least your meds will be covered.

So, what meds are you on now? What's working for you?

Are you on any diet? Diet is a big factor for so many of us.

And stress too - mix that in and you've got major problems.

Glad you came to our forum; it's a great place to get support and advice from those who have been in the trenches.

Let us know how we can help.

Posted 7/13/2011 1:48 PM (GMT 0)
brett, unfortunately, I do think the fatigue is linked to UC for me but I had the fatigue before I developed UC. I am not sure why? My headaces aren't too frequent but they are quite debilitating. Have you seen someone for yours? You know, we aren't supposed to take Advil or NSAIDS and that makes these migraines very difficult to treat. I defiintely recommend seeing a neurologist and getting treatment for your migraines. I tried Zomig the other day and it helped me a bit. If you have them every other day, they would probably put you on a preventative because you can't take tripthans everyday as far as I know. There is a migraine board here that can be helpful. It has been helpful for me :)

Are you still taking 6mp?

Have you tried rectal meds?

I really wouldn't want to go on prednisone again if I could avoid it. I had a terrible experience too. I am just starting to get my chin back!
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