So Very Sick--dont know what to do

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

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

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

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.

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.

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.

1) Look into a county hospital as many have to accept people regardless of their ability to pay

2) Please feel better soon : )

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))))

:)

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.

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.