Question / Guidance

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

VegasGuy
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/14/2008 7:42 AM (GMT -6)   
I'm not sure exactly where to start or exactly what to say, so this may come out jumbled a bit.

Basically I am 27 years old and was diagnosed with UC / Crohn's / PSC back at the age of 18. I wont go into my story or anything since I'm sure everyone has read their fair share of peoples "sad life stories". The short of it is after a year of being medicated with many different things nothing helped. I then did the stupid, stubborn thing of stopping my treatment and stopped going to see my doctor (not very personable). At the age of 23 I decided I wanted to get my health in order, so I moved to where my mom lives and tried to get my life under control. My doctor there was great, but since I live off Disability I had to move where the people I live with moved to (back to Las Vegas). Since coming back here 6 months ago I haven't been to any doctors or anything, but I've stayed on one of my medications (azathioprene...it makes life somewhat bearable).

My main goal is to move back up to the Boise area since I really liked my doctor up there, but I can't figure out any sort of way to make it work financially. I can't even afford all my current medications right now and that's with me living with someone else.

So my questions are mainly based on the financial side of things. How are people able to live on their own while on limited income? Does anyone know of cheaper ways to get my medications? How do people deal with the stress of all this on top of the problems with the disease itself? I've had people suggest that I should talk to someone about how the disease is making me depressed and all, but who can I talk to that, well, won't charge me?

I'm sorry if this all seems like a blur of a post. I've just been really frustrated for a really long time and the stress of it all just seems to make me even more sick.

Thanks in advance for any responses.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/14/2008 11:36 AM (GMT -6)   
Hi and Welcome! Have you called any of the medical companies to see if they offer programs for those that can't afford prescriptions? Are you able to work? I'm going to see what I can find you in regards to psychiatric help for those who can't afford it. You hang in there!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 5/14/2008 1:49 PM (GMT -6)   
Most of the companies have a assistant program for people who cant afford the meds. you can call this number and they can send you the info you need. 1-888-477-2669 or www.PPARx.org hope this helps.it goes by your income and how many people in the household. you can get it free are at a lower price.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/14/2008 2:52 PM (GMT -6)   
It is really difficult, I totally understand where you're coming from. Right now I'm in a flare and should most definitely be on medication, but I just started a new job and have to wait till July for the insurance to become effective and I simply can't afford the medication out of pocket. There are programs that offer reduced cost or free medications if you qualify, like www.rxassist.com
The problem with that is you need a doctor's signature and a prescription from one, which is hard to get if you can't get in to see a doctor!! But you could probably try a free clinic or something and see if they would fill one out for you. Oddly enough, I qualify to receive my azathioprine free, but not the asacol, which always seemed MUCH more expensive! Grr.

Good luck. There are always options, you just have to dig deep.

And don't be afraid to share you stories or just come here to vent, that's what we're here for and I guarantee no one minds :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/14/2008 3:10 PM (GMT -6)   
I assume that your financial problems are due to you inability to work fulltime and that is due to your UC? If that's the case you really need to get your disease under control so you can get your life back. You might be depressed too which will hinder your ability to get things in order. I suggest you check out free services at UNLV. I believe they have a med school and where you find med schools you can find free or very low cost psych counseling. Even if they don't have a med school regular universities with psych majors offer counseling services to the community. Many years ago I got free counseling services from a university and it was THE BEST help I ever recevied for my emotional well being. Once you treat the psychological side and get yourself on proper maintenance meds and into remission you will be able to make that move back to Idaho.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


VegasGuy
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/15/2008 12:39 PM (GMT -6)   
Thanks for the quick responses. Now for some quick answers to questions:

1) I haven't tried calling any of the medical companies to see if they offer assistance. I honestly didn't even think of that, but will definitely look into it.
2) No, I am not able to work. I've pretty much been in a prolonged flareup for the last 3 to 4 years and it has taken its toll on my body. I am 6'1" and currently weight about 140 lbs.. I also am pretty anemic (have had a number of blood transfusions).
3) I will be sure to check out UNLV and see if they have any free psych counseling. I know Boise State University offered this, but it was only for enrolled students.

Part of my inability to afford all my meds is due to the fact that when I first qualified for Disability it was already past the yearly signup time for Medicare's Prescription Drug Plan. The sign-up period came around again this last winter and I filled out what I figured was the proper paperwork, but I later found out I hadn't. By the time I found out it was too late. That's probably my fault for not staying on top of it, but there's nothing I can do about it now. Not until the signup period comes along again. So basically I'm having to pay full cost for all my prescriptions which is far more than I can afford (Disability only pays me right around $1,000 a month and that doesn't even come close to paying all my bills.)

That last paragraph was probably a bit of a ramble, but someone said I could vent here so I took advantage of it. ;-) I don't really have many people to talk to about this, so just typing out my frustrations helps a little.

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/15/2008 3:28 PM (GMT -6)   
Another option is to contact your doctor about free samples that the med companies give him/her.

Where in your colon is your UC? What meds are you taking now and at what doses? Are you taking any supplements? Are you following any certain "diets" or eating habits?

These questions are just to give us a bit more insight and let us recommend other/additional options.

BTW - Welcome to HW!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 5/15/2008 6:49 PM (GMT -6)   
It's really tough to have to worry about financial issues when you are also struggling with your health. My heart goes out to you.

I found a website that might be a place to start for looking for free psych help and possible some help with getting medications paid for:
http://mhds.nv.gov/index.php?option=com_content&task=view&id=64&Itemid=72

It looks like there are different links that take you to agencies that deal with different parts of NV, so you might have to look around a bit.

If UNLV psych services are only for students, you might want to ask if their psych grad students or school of social work have any free group therapy or something.

Another idea would be to contact the hospital and see if there's a support group for people with chronic illness. I think that our local hospital had something like that advertised some years back.

Sorry I'm just throwing ideas out as they come to me. But another is that navigating the disability system might be something that a public social worker or free legal aid service could do for you. That is, maybe someone can appeal the fact that you missed some stupid deadline and now can't pay for your drugs. Someone who knows that whole system would be very helpful, I think.

Now-- about getting medical treatment. Are you being treated for PSC also? Do you have a plan for finding a good doctor in LV? If not, we can probably brainstorm about that here and try to help you with a plan. I know it takes a lot of energy to manage your health -- energy that most of us don't have.

Vent away. We will listen!
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/15/2008 7:13 PM (GMT -6)   
Welcome to HW! Everyone has great suggestions. As far as counseling, Catholic Charities has sliding fee scales ($0 in some cases). I'm sure other places do this, too. I love julee70's idea about group therapy. I wonder if there's a local group for people who suffer from depression, UC or other concerns you're dealing with? You can ask your GI if he/she knows about any. Mine gave me pamphlets about the emotional side of UC with info about groups in my area.

Good luck! You've found a good place here at HW.
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
 Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Canasa & Rowasa at night starting 5/12/08 for 2 wks


VegasGuy
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/15/2008 11:35 PM (GMT -6)   
Julee70, thanks for your response.

Don't apologize for just throwing out suggestions. I am glad you are. It gives me more of an idea of things I can look into. I really like the support group idea, so I'm hoping one of the local hospitals has something like that. The only time (other than talking to my GI) I've ever felt like I was having a helpful conversation about UC is when I went out to a hospital in Utah when my GI felt I was in risk of needing a liver transplant. That day they had several people around to talk to who had previously had a liver transplant and two of them that were there had the transplant due to complications with UC / PSC. It was real helpful just talking to them. It turned out I didn't need a liver transplant (this was last January and they said in about 18 months they wanted me to come back for another evaluation).

Anyways, yes I also have PSC and was getting treatment for it. I say "was" because the medications cost me $170 a month and there is no way I can afford that. With the complications I've already had with my liver I know it's a really bad idea for me to have gone off the meds, but I don't really have a choice. This is one of the main reasons I came here to ask the stuff I did. I can get my old doctor to refill the prescription at any time. I just need to be able to afford it.

I do not have a plan for finding a good doctor out here in Las Vegas. In Boise my GI was a real nice guy and I could tell he cared. He noticed I had missed a few appointments and called me to find out why. I simply told him I couldn't afford the co-pay at the time and I already felt bad that I had an outstanding bill of over a couple thousand dollars (just with him...how much I owe hospitals is MUCH more). Well, he told me to come in the next day and when I did we had our normal check-up. At the end of it he told me that my previous balance had been wiped clean and I would no longer ever be charged by him. That helped make things a ton easier on me, so I stayed on top of my visits. Out here in Las Vegas I am living on an even tighter budget (cost of living is much higher out here) and I have already had some really bad experiences with a number of places back when I originally got sick. Quite a few of the other places out here just went through a major hepatitis scandal so I've been waiting to see how that played out as well (turns out it was mainly one place...a place I actually had an endoscopy at before that time frame).

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 5/16/2008 7:35 AM (GMT -6)   
VegasGuy,
I'm really glad that the ideas are helpful. I am really concerned that you're not able to afford the PSC meds. If you don't feel up to contacting the manufacturer, I think that contacting a free local social work agency is a good option. Someone else should be able to figure out how to get you free medication. They must deal with this all the time.

Your doctor in Boise sounds like a great guy. That's a really great story.

I'll do some thinking about finding a good, free doctor in LV and write tomorrow with some suggestions....
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 5/18/2008 11:08 AM (GMT -6)   
Hi VegasGuy. Here's one more thought for you. Have you called the Crohns and Colitis Foundation of America? They have a hotline for free info:
1-888-My Gut Pain

The CCFA may have more info about where to get free meds or where to find free/low-cost healthcare.

I have been thinking of you and really worrying about you and all the other people who are not getting enough medical care. I know that PSC and UC both need to be monitored by a doctor, so I really, really hope that you can find some free medical care in Las Vegas.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, July 17, 2018 2:40 PM (GMT -6)
There are a total of 2,982,487 posts in 327,008 threads.
View Active Threads


Who's Online
This forum has 161827 registered members. Please welcome our newest member, Robert A.
446 Guest(s), 11 Registered Member(s) are currently online.  Details
Kent M., torontolyme, vminas01, JAS01, ashleylynn, jmiller056, Syon, RandyJoe, BillyBob@388, OriolCarol, Robert A