So Very Sick--dont know what to do

Do you feel this sick??
1
Yes - 8.3%
5
No - 41.7%
6
Its bad but manageable - 50.0%

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

SoVerySick
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/14/2009 7:26 PM (GMT -6)   
Hello,
 
I was diagnosed with UC in Sept of 2002 and have never had my condition in remission. For the past 6 years my entire life has been destroyed becasue of this disease. I have tried everything to get things under control to no avail. I currently have no heath insurance, have been denied medicade, medicare and disabilty--so I have no help anymore. I have spent over $150,000 of my own money trying to get the best possible care and all I have found out is that the GI docs are clueless about this disease. I tried remicade at $8000 per treatment and it did nothing--except take $50,000 from me--I've been on prednisone, imuran, asacol, pentasa, cipro, flagy, you name it, I've tried it. I'm just hopeless now--doctors wont see me, I have no more money, I'm too sick to work, I lost my home, my credit has been destroyed becasue of the bills I couldnt pay and hospitals wont see me cause of the money I owe them.
 
I use the bathroom upwards of 20 times a day and this has been going on for as long as I can remember, I have not had a normal bowel movement in 6 years, I have fissures that make every bowl movement so painful I feel like Im being tortured, and I cant sleep--if I do actually fall asleep I wake up an hour later soaked in a pool of sweat becasue of the prednisone.
 
They say all you need to do to survive is eat, drink, and breath and I can only do one of them. All I can do is sit in my home thats been forclosed on and breath, breathe by breathe, praying for a miracle, until I'm actually kicked out of my home--to go where?? I have not a clue what will happen to me. I've lost friends, my family can no longer help, and its all because I got this debilitating disease when I was 22 and in the best shape of my life.  I was robbed of my life like so many of you and I would give my life to allow any of you to rid this disease of your body. Why us??? So many of us!!!
 
The only drug that can give me any sort of normalcy (if you can call it that) is prednisone, but the side effects are tough to deal with. It doesn't stop any of my symptoms, but at least I can make it to the store and back without having to use the bathroom if I'm lucky. I cant find any general doc to even prescribe me prednisone because they feel I should be with a gastro doc--which I have had 8 of--and all they do is make me see them every month (for $100) and then give me my $20 prescription, so now I have to buy the meds oversees--which I dont even know how safe the stuff I'm taking is--but its all I can do now.
 
I've tried every alternative therapy as well--acupuncture,  probiotics, all the weird and strange things you hear about--I've not seen a therapy out there that I have not tried. I fell lucky to have been able to try these things, but now I'm literally at what I feel like is my end. I wish I could be homeless, but with my condition I cant even do that--no toilets out in the street--so what do I do??? The failures of the American Medical System I have experienced all too well and its maddening and sad to see everyone who is in this boat--but its life I guess.
 
Today I decided to write--to tell all of you I'm sorry for your pain, and maybe to get advice on what to do--I will wake up tomorrow with absolutely nothing left and nothing will change--I'll be stuck in a body that rejects what is needed to survive--and with about a weeks worth of food--until I'll just sit and wait until I'm dead. I can't ask for help anymore--I'm a burden on everyone around me and dont wish to say to everyone that asks and cares that "I'm ok"--I'm tired of telling that lie.
 
I wish everyone the best--and I'll prey for your health--I just wish I could help you all
 
Love and Blessings
Angel to be
 
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/14/2009 7:40 PM (GMT -6)   

I had refractive disease like you.  After 2 years of seeing no relief I opted for j-pouch surgery.  That was 8 years ago.  Since then I have been healthy, on no meds, active, and extremely pleased with my altered plumbing.  I was robbed of 2 years of my life with the disease and am grateful every day now that I can do the things I love.  You've given up a lot of your life to UC; you can live a healthy whole life again post disease.  Has any doctor ever broached surgery?

 

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


SoVerySick
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/14/2009 7:45 PM (GMT -6)   
As of now there is no way for me to get surgery becasue of the cost--its not considered life threatening so I'm out of luck there. Glad to hear your surgery was so successful--a lot of people I have talked to have just said that they basically traded symptoms with the surgery.

Appreciate your reply and glad your doing well!! Good to hear

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 5/14/2009 8:14 PM (GMT -6)   
So you're 28 and you've managed to scrape together $150,000 for medical treatments and you own a house? You've done a lot better than I have. No but seriously, I do understand your predicament. When I was sick, working was difficult if not impossible. What line of work are you in? Can you work from home at all? I have been denied insurance too. Do you know anyone who you can speak to about getting you on their group policy? An old employer or a family member who owns a business? Just throwing some ideas out. It's unfortunate that in this country, we can't get insurance because it would not generate any profit for the insurance company. We can just sit around dying and no one cares.. it all comes down to a dollar. What will happen to us? On a side note, I saw that pfizer is giving free drugs to unemployed people and patient assistance programs can be a life saver. You need to get back on your feet and that's not going to happen when you feel this awful. I heard public hospitals can't turn you away for emergency care. Maybe you should take a trip to the ER? You can also try to get into a clinical trial. They are free and can provide excellent medical care if you qualify.
 
I buy meds overseas sometimes. Usually it is exactly the same and less expensive. I am all about it. Now that I get everything for free through patient assistance programs I don't have to order anymore but the drugs I got were just as effective and helped immensely at the time. Maybe you can get into a trial for Humira?
 
Do you have any family who can help you?
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
 


SoVerySick
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/14/2009 8:44 PM (GMT -6)   
I've been fortunate for sure. I started my own company in 2006 while I was sick so I was able to work from home--I made a lot of money and all of it has gone to my disease--but things fell apart, I ended up in litigation, and the economy collapsing didnt help anything. Like I said I'm lucky to get the treatments I did; however, making that money makes getting help that much more difficult--meaning they (Medicade, medicare, etc.) question everything and hold making that money against me. So I get denied for everything. The ER cant turn you away, but the dont have to admit you into the hospital--meaning even if your real sick they will treat you and send you on your way--with a bill of at least $1000--especially if you go to the ER--urgent care is less expensive. Typically patients with no insurance will get turned away--while I had my company I applied for small business insurance but got denied by every heathcare company out there. I did just see that Pfizer is giving free meds--but you still need the doc to write the prescription. Also applied to almost every clinical trial I could while I've been sick--no luck. Humira is very similar to remicade--doctors told me that it wouldn't of been worth the cost (almost the same as remicade) after my remicade treatments did nothing for me. I've tried to get into a group policy, but they wont cover pre-existing conditions--so again just no luck. I'm not sure if making and losing everything was a blessing or not--I just wish that I could have given the money to someone who it actaully helped--so its tough to see everything I was able to do really be for nothing at all--just frustrating.

I appreciate your input immensly and happy you seem to be doing well

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 5/15/2009 6:23 AM (GMT -6)   
I am really sorry things are so hard for you right now. Please know that things will turn around. You can't be denied from a group policy through an employer. That is at least what I was told when I was shopping for insurance and got denied from private programs. I have seen people here who Remicade didn't work for that are able to maintain remission with Humira. Don't let anyone tell you the answers, you have to look for your unique answer yourself. It is all very individual and you never know what might help you. Where do you live? There is a clinical trial near me that they would definitely let you into. Even if you are denied, you will be in a better place than you are now because the procedure of getting into the study will allow you to find some answers. I would look into the group policy thing again. I don't think you can be denied. If I get a job with IBM tomorrow, they are going to insure me through their policy and I shouldn't have problems. Keep thinking positive. Something good will come to you soon. This economy is hard, I lost my job, have no insurance, flared really bad, I had to move because I couldn't afford bills. Things haven't turned around for me financially but at least I am feeling better.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/15/2009 7:14 AM (GMT -6)   
why not just go ahead with surgery, & pay your bill bit by bit? All hospitals will work out a payment plan with you. I really have no idea of the total cost of an ileostomy, but I'd think that would be the cheapest route- one surgery, generally no problems afterwards which would require meds/more docotr visits, etc. Unless you prefer to sit in your house & waste away. I'm sorry you are feeling so awful, & have been for so long, but I don't really sympathize- get up & do something about it! Don't be so passive.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/15/2009 12:57 PM (GMT -6)   
I also find it hard to believe there's not a hospital in your area that would help a desperately ill person who's unable to work, deeply in debt and is about to lose their home. There are charity and teaching hospitals that cannot turn someone away based on their inability to pay. You obviously can't go on as you are. If nothing else, see a social worker at a nearby hospital and see what your options are. If they can't help you, they should be able to refer you to facility that will.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 5/15/2009 2:02 PM (GMT -6)   
Dear So Sick, you sound really run down and depressed. Do you take anything at all for depression? Not that it will help with the UC but it may help you to cope with your illness. It sounds like you have had a very rough time of it. I hate that because of a person's illness, they can loose their home etc.... along with their health. Have you contacted an attorney about all this? I know it is hard but it sounds like you need to file for disability with an attorney. Also, have you checked out any free clinics in your area? They are good with free meds and support. If you don't know of one, check with your hospital, the internet, and the local health department, they can probably steer you in the right direction. Hang in there, don't give up and God bless. There will be an upside to this and keep telling yourself that.
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/15/2009 2:02 PM (GMT -6)   
SoVerySick- Just wondering, what do you "typically" eat and drink in the run of a day? Do you have favorite foods
(and drinks) you like to eat?

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 5/15/2009 8:30 PM (GMT -6)   
SoVerySick- I am so sorry you are at a point where you can't even consider surgery due to no insurance. I know the pain of spending out of pocket in that I have spent tens of thousands on pig whipworm eggs (TSO)- which helped but never kept me off prednisone. Have you considered pursuing surgery in a place like India? I keep it in the back of my mind if I ever lose my insurance and have to get surgery. The facilities that cater to medical tourism are as modern as here and the surgeons are U.S. or European trained. Even with travel and luxury hotel time the cost would only be a small fraction of the uninsured cost in the U.S., totaling perhaps $15,000 or so versus perhaps $70-100,000 or something in the U.S.. I inquired with one place out of curiosity and the biggest turn-off to me was that they said they only did one step surgeries, which sounds unrealistic for most UC patients in my opinion.
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/15/2009 9:10 PM (GMT -6)   
Could you handle a part time job at a place that offer insurance like Petco, Starbucks or Fed ex? Im so sorry you are in this situation. Have you informed your mortgage company that you are ill and asked for forebearance? Good luck!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/15/2009 10:27 PM (GMT -6)   
1) Look into a county hospital as many have to accept people regardless of their ability to pay

2) Please feel better soon : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/16/2009 12:10 AM (GMT -6)   
I know how you feel. There was a period in which I was unemployed, and I could not get Medical/Medicade due to a loophole.

During that time, I had hurt my back, and the ambulance took me to a hospital that was supposed to take everyone irregardless of whether or not they had insurance. I didn't have insurance; so the doctor at the hospital gave me a shot of morphine and sent me on my way. I was in so much pain that I couldn't stand up. My daughter's boyfriend (now husband) had to carry me to the car. But I guess the doctor did me a favor. It was difficult for me to find the funds to pay for the ambulance and hospital treatment that I did get.

I learned my lesson and waited before seeing a doctor when I had my second flare (the first flare was mild; I thought I had hemorrhoids). Once I got the insurance, I had trouble finding a GI who would see me right away. I was in very bad shape; so I went to the emergency room. All they did was give me an IV, because I was dehydrated. They couldn't admit me into the hospital, because I wasn't anemic enough. It did not matter that my colon was like dog meat at the time.

Have you tried any natural treatments, such as probiotics and diet? If natural treatments don't work, and you can't get into remission, then it makes sense to get surgery. The problem of course is that you don't have insurance, and you don't know who to turn to. Have you tried the Chron's and Colitis foundation of America (CCFA.org)? Maybe they can point you to the right direction. I also heard that the social security or Health and Human Services can help. And then some hospitals supposedly do offer assistance of some kind, such as loans and discounts.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/16/2009 12:24 AM (GMT -6)   
Hi SoVerySick, I know you mentioned that you've tried probiotics and everything under the sun including naturals and all (Have you tried bee propolis, I've had good results from it myself, not 100% remission but better than the 30+ times a day I was going to the can), often things will work better in conjunction with other things, like with me, bee propolis, fibre supplements, probiotics, omegas 3-6-9 and some vitamins) it's also important to give each product a good chance cuz it can take a while for some things to kick in (other than the bee propolis nothing eles worked overnight for me).

If you're in the US then you should really contact your nearest chapter of the CCFA (crohn's and colitis foundation of america) and they should be able to help guide you to getting proper help, even direct you to where you may get meds for free or next to nothing (at least I would hope they can).

I wish you the best of luck in getting better and hope you're able to turn all the bad around to good in your life ((((HUGS))))

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3867
   Posted 5/16/2009 6:54 AM (GMT -6)   
Have you tried HPI, Human Probiotic Infusion.
Old Mike

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/16/2009 10:56 AM (GMT -6)   
I would also suggest fecal transplantation, but many people just don't want to try it even if they are very sick. Plus, if your colon inflammation is not due to an imbalance of fecal flora, then there is less chance it will work.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


sgtpeper
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 5/16/2009 11:35 AM (GMT -6)   
I hope this guy posts again. I'm a bit worried about the poor guy..

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 5/16/2009 6:54 PM (GMT -6)   
Yea, I am too. He sounded very depressed to me and one person posted a note that, in my opinion, was ugly. It surprised me to see a post like that here. It was very insensitive. We are here to help and be supportive.
diagnosed 1/09 with colitis & diverticulitis
 54 yo, colazal, fish oil, synthroid, cymbalta


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 5/16/2009 7:18 PM (GMT -6)   
I hope I wasn't nasty. I too am unemployed and completely broke. I understand how difficult it is.,
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 3:59 AM (GMT -6)
There are a total of 2,974,912 posts in 326,222 threads.
View Active Threads


Who's Online
This forum has 161315 registered members. Please welcome our newest member, Noluck.
266 Guest(s), 0 Registered Member(s) are currently online.  Details