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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region Forumsthis world is so screwed up. I have Crohn's and a raging case of C-Diff. Insurance denied
the super antibiotic designed specifically for C-Diff
I failed the first antibiotic and am on a second one -without insurance it would have cost 1289 + dollars.
Insurance got it down to the co-pay.
Once I have "failed" the first antibiotic and the second then I can get the specific one that would have probably already corrected the C-Diff
I am fighting my employment to keep my job and go back to work once the doctor says I can
I still could end up in the hospital-probably should have been.
I have not eaten much of anything for 3 weeks and counting.
I am worth more dead than alive.
If I didn't have student loans I could maybe relax and heal.
Additionally our state is so screwed up we have been frozen for 8 years on our pay scale so the Master's that I am paying the student loans on doesn't even count.
I really am ready to give up.
https://www.gofundme.com/pamelas-crohns-disease-relief
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Xipe Totec
(43,888 posts)Because the people most vulnerable, the ones who desperately need medical coverage, are oftentimes the ones unable to work because of their medical condition.
Tying medical coverage to employment is a cruel farce.
Especially cruel.
hunter
(38,301 posts)When the COBRA timed out my wife was still undergoing very expensive treatments and she was still on the waiting list for our State's "high risk" insurance pool. It was hell. I'm certain people in similar situations simply give up and die.
My wife's been in remission long enough now to consider herself cured, but waiting for the results of lab tests five years later was still terrifying.
My brother had cancer, a very major surgery and chemotherapy that nearly killed him, and the health insurance he had at the time was woefully inadequate, leaving him bankrupt. After his year and a half of hell he simply quit going to the doctor. Live or die, he decided he wasn't going to go through that again. Fortunately, decades later, it's apparent the surgery and chemo worked.
The U.S.A. pretends it's a "first world" civilized nation, but it's not.
spanone
(135,781 posts)
applegrove
(118,462 posts)
onecaliberal
(32,775 posts)We care.
demtenjeep
(31,997 posts)things were okay -working to pay off things
cut down on spending a lot to try to get ahead. Now facing a scary future and will never make it.
demtenjeep
(31,997 posts)when a 10th of that would solve my problem
I have 7 years to retirement and can not afford the 6 months it would take to see if maybe I was approved for disability. I don't even want that. I enjoy my career and still have a passion for it, but I can not do it being so sick.
FarCenter
(19,429 posts)demtenjeep
(31,997 posts)Insurance probably has huge hoops to jump through.
I have family that already said they would be a part of it.
This is the 2nd time I have had C-Diff in the last 5 years.
FarCenter
(19,429 posts)So people do it themselves.
Buckeye_Democrat
(14,852 posts)A woman who'd been on strong antibiotics developed an imbalance of bacteria in her intestines. She was hospitalized and near death from it, and then a doctor suggested placing some of her husband's fecal matter inside her intestines. She quickly showed improvement and regained her health.
rwsanders
(2,594 posts)She was close to having most of her large intestines removed. She improved in 2-3 days.
rwsanders
(2,594 posts)You can even take them together, but just don't take the probiotic within 2 hours of the antibiotic or it will be neutralized. We even do this for the dog. She had bloody stools a couple of times as a puppy and after 2 $200 visit to the vet, the probiotics are a bargain. She's never had it again and we give her the probiotic if she has to take an antibiotic.
If you want the complete low down, Discover magazine has had some great articles about it over the past 3-5 years. It is all a matter of bacterial ecology. This is actually a huge area of research for NASA right now as space travel changes the ratios of bacteria and there is no way to send a human into space without a huge load of bacteria some of which could become harmful on long flights. So they want to know what is going on down there.
Ms. Toad
(33,992 posts)It does need to be intransigent in order for insurance to approve it. For me that meant 6+ months, three different meds, multiple courses of two of them.
Catherine Vincent
(34,486 posts)I told her about the fecal transplant and she asked her doc about it but he told her Medicaid/SSI doesn't pay for it...not even a portion.
TexasBushwhacker
(20,131 posts)You can buy it OTC at the drug store. It saved me when I got C diff after using strong antibiotics.
https://www.walgreens.com/store/c/florastor-250-mg-supplement/ID=prod6342401-product
It also helps to drink kefir (more strains of probiotics than yogurt) and eat fermented foods like kim chi and sauerkraut.
Catherine Vincent
(34,486 posts)demtenjeep
(31,997 posts)I will devote my life to helping others
many of us just fall through the cracks
others waste more $ than I would ever need in my life.
our priorities are so messed up.
My father raised 6 kids on less than I have made and my mother didn't work.
I just don't understand how things are so screwed up.
bdamomma
(63,791 posts)please we are here if you need us
demtenjeep
(31,997 posts)and how much was raised in so short of time
reality "stars" that make so much money for stupid things
and all I need is such a small amount compared to all of that
Maybe this is my purpose in life-if I can come out of this in one piece maybe I should create some kind of foundation for people like me that fall through the cracks.
uponit7771
(90,301 posts)
a kennedy
(29,606 posts) demtenjeep
(31,997 posts)I certainly would have made some different choices
elehhhhna
(32,076 posts)Everything is temporary, even this. I'm assuming you're staying hydrated and that your physician has attempted to get you the proper medication, and that if your employer has 15 or more employees you are covered under ADA
yardwork
(61,533 posts)smirkymonkey
(63,221 posts)Master's school loan and am in so over my head. I feel like I exist to pay it off. I haven't had a raise in years and everything just keeps going up. I feel like if I ever lost my job that it would be an absolute catastrophe. I don't know what I would do but please know that there are other people who feel just like you and are on your side and in your boat.
Just please know that you are not alone.
demtenjeep
(31,997 posts)and in one day life changed drastically
smirkymonkey
(63,221 posts)thinking that I have always been taken care of. Sometimes miracles have come out of the blue at my darkest times. Not like I won the lottery or anything, but that I have received just what I have needed to help me go on. The most important thing is not to isolate yourself It's tempting when you feel this way, but the best thing you can do is reach out and you have taken the first and most important step.
Do you have a a support group or warm community around you?
demtenjeep
(31,997 posts)I know there are a lot of people worse off than me
I just feel trapped and so sick. It is hard to see the purpose right now.
Maru Kitteh
(28,313 posts)Have you seen more than one doc about this, or a nurse practitioner, or a nutritionist, or combo thereof?
C-Diff is a serious ass kicker and I'm amazed you're not hospitalized right now.
Such a wretched infection to have. Sorry you're going through this. When my mom popped up with cdiff and it was going poorly I just started giving her a metric ton of probiobiotics. I don't know if that's anything you've discussed with the doc or anyone, but I hope you snap back soon and all your needs are met.
demtenjeep
(31,997 posts)He is a GI specialist...pretty good at what he does.
Called me at home to tell me I had C-Diff and another infection. On Nov 8 he called me and put me on Flagyl and another antibiotic.
I was rechecked before Turkey day and still had it. He wanted Dificid and did the medical authorization. Insurance denied it.
Put me on Vancomycian and still on it. I get rechecked next week.
I have seen my GI doc and his PA each week since Nov 8
I still feel horrible and am pretty surprised he didn't just hospitalize me and give me IV antibiotics.
I was at Doctor yesterday and I am dehydrated and my blood pressure was up. Top number was 144. I have never had it that high.
My doc is good. He is doing all he can but maybe it is a losing battle
The Crohn's makes everything more difficult. I also have had Pancreatitis like 10 time in the last 8 years so it makes all meds more difficult.
I guess I am physically hopeless.
csziggy
(34,131 posts)Patient Assistance Program
Many programs are available from federal and state governments, non-profits, manufacturers, and other organizations to help you get the drugs you need at a reduced cost. Eligibility is often based on income, insurance or Medicare status, and other factors. You’ll need to apply through each program, either online, over the phone, or with your doctor's help. The following program is offered by the manufacturer of this drug.
Program Name: Merck Helps
Provider: Merck
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What are the benefits? You can receive your medication at no cost.
What are the restrictions? Most people without insurance and with limited incomes will qualify.
Keep in mind: Insured and Medicare Part D patients may still be eligible for the program under certain eligibility criteria. Contact the program to find out more.
https://www.goodrx.com/fidaxomicin/savings-tips?drug-name=Fidaxomicin
This is an expensive drug! Even with GoodRx.com it's almost $4000 for 20 pills.
Ms. Toad
(33,992 posts)My daughter sees a GI doc at a top hospital in the country for her IBD (actually the world if you count all of the Middle East dignitaries that travel for care there).
He won't touch her when she gets c-diff. GI docs are not as well trained to handle infectious diseases as infectious disease docs.
demtenjeep
(31,997 posts)and I honestly believe he is doing his best.
He calls me at home and stays in contact daily.
I am not just a number for him
Ms. Toad
(33,992 posts)If not, get yourself to an infectious disease doc. They specialize in treating hard to manage infectious diseases like c. diff. GI docs do not. They are fine for the first, at most second, round of antibiotics, but not beyond. Just because an infection hangs out in the gut does not mean it is in the realm of GI medicine.
I'm not suggesting he isn't doing his best. What I am suggesting is that this deadly disease is not his specialty, and it should be handled by someone who does specialize in it.
My daughter was diagnosed with ulcerative colitis more than two decades ago when she was 4, and now has PSC. Her GI doc doesn't treat her PSC because even though the liver falls within the general GI specialty - the disease is beyond what is appropriately handled by someone who is not also trained as a hepatologist. Same thing with the bouts she has had with c. diff. If one round of antibiotics doesn't resolve the deadly disease to which she is more prone because of her UC, her GI doc ships her to the infectious disease doc. He is wise enough to know that (1) you don't let a flaming c. diff infection continue and (2) intransigent c. diff is beyond his expertise.
When my c. diff a few years ago didn't respond by the second round of antibiotics - I went to my daughter's infectious disease doc. It was only his expertise at knowing how to coax the c. diff out of their spore phase so they can be killed (the pulse/taper regimen) that permanently resolved the matter.
demtenjeep
(31,997 posts)I hear you loud and clear
Texasgal
(17,037 posts)what is the name of this med you need?
I'm curious because I had the same issue with our insurance for a super antibiotic that my husband needed while awaiting a liver transplant. I just lost him on November 3rd.
I have many resources and may be able to help. You can PM me if you'd prefer.
I am so sorry you are having these problems. I hope you get better soon. *hugs*
sdfernando
(4,923 posts)Doctors were not much help. Check out MegaSpore Probiotic, s. Ballardie (so?) and a product called Restore. Took a long time but he is almost totally recovered now. Drs were very little help. Also consider FMT (fecal microbial transplant). Sounds gross but it works!!!!
Ms. Toad
(33,992 posts)that research studies establish both helps put c dff into remission and keep it there longer.
JesterCS
(1,827 posts)Thankfully what they gave me cleared it up before I graduated HS in 2000
demtenjeep
(31,997 posts)it is a horrible painful disease
demtenjeep
(31,997 posts)recommended me to be off work-actually right now I can't work
I am supposed to be able to get 70% for a certain number of days and all the paperwork has been completed.
I just haven't heard anything
elehhhhna
(32,076 posts)Disability benefits that you are covered under
demtenjeep
(31,997 posts)believe me, we are on it
Equinox Moon
(6,344 posts)
Liberty Belle
(9,532 posts)He runs a complementary medicine clinic in AZ that takes the best of western medicine, eastern medicine, alternative and nutritional therapies: http://www.drweil.com/health-wellness/body-mind-spirit/gastrointestinal/crohns-disease/
What therapies does Dr. Weil recommend for Crohn’s disease?
Initially, patients should see practitioners of traditional Chinese medicine. Their modern approach includes acupuncture and herbal remedies in addition to dietary adjustment and, possibly, massage and energy work, an integrated solution that can yield very good results. Ayurvedic medicine, radical dietary change, and long-term fasting (under supervision) can also be helpful. A high-fiber diet may also provide a benefit, but during the active stages of the illness, it is best to avoid raw fruits, raw vegetables, seeds and nuts because they will irritate the digestive system.
Here are some other measures that can help:
Avoid coffee, including decaffeinated varieties (which may still contain some caffeine), all other sources of caffeine and all stimulant drugs.
Avoid milk, milk protein (casein) and all milk products. Remove any products made with carageenan from your diet. (Read labels on soy products carefully).
Avoid products sweetened with sorbitol, xylitol, or other sugar alcohols.
Take slippery elm in the form of gruel: Combine one teaspoon of the powder with one teaspoon of sugar and two cups of boiling water. Stir well. Flavor with cinnamon and drink one or two cups twice a day.
If cramping is a problem, take enteric-coated capsules of peppermint oil between meals to relieve the spasmodic component of inflammatory bowel disease
Practice breathing exercises for relaxation.
Because stress can worsen symptoms, take a course in biofeedback or experiment with hypnotherapy and guided imagery to use the mind/body connection to heal the gut.
Consider psychotherapy or cognitive behavioral therapy to work on emotional conflicts that can exacerbate symptoms.
To help address inflammation, follow an anti-inflammatory diet and increase your intake of dietary omega-3 fatty acids by taking supplemental fish oil, start with one gram a day and increase slowly to two to four grams a day. If there is any increase in diarrhea, and cut back the supplement dose if necessary.
MineralMan
(146,248 posts)you are a medical professional. Thanks so much.
Weil is a vitamin salesman. He has not seen the person who wrote this OP. No legitimate doctor gives medical advice to patients he has not seen. Neither should you.
https://www.weilvitaminadvisor.com/drw?aid=333316&aparam=DrWrosnavUNI&utm_source=DRW&utm_medium=referral&utm_content=DrWrosnavUNI&utm_campaign=VA&promo=UNNAV
demtenjeep
(31,997 posts)I just don't know how people do it
Buckeye_Democrat
(14,852 posts)It's crazy how this country doesn't have true universal healthcare!
Hang in there!!
Freethinker65
(9,998 posts)Diagnosed with C-diff several years ago. Put on Flagyl (spelling might be off) for a few days with no improvement. Called and got switched to Cipro or Vanco? if I remember correctly. I am not positive if $ was the reason for starting me on Flagyl, but I would not be surprised. I know what you are going through. My gut lining took a long time to recover, but it did. Also looked into fecal transplants. After the abx that worked, I took probiotics...still do not know if probiotics survive the stomach, but have been C-diff free since.
demtenjeep
(31,997 posts)Thank you
did you feel like you were dying
emmadoggy
(2,142 posts)but had a much worse case last year. She told me she thought she was going to die at the time. 
Freethinker65
(9,998 posts)In the bathroom cramping up in pain. I waited many weeks to get diagnosis and treatment figuring whatever it was would go away on its own. I started to notice blood and mucous more regularly and finally got scared enough to make a call. I got in to see a junior gastroenterologist almost immediately. I was his second patient. I would have had to wait over a month to see a senior gastro doc.
demtenjeep
(31,997 posts)I literally only owe student loans and had I known 10 years ago what I do now, I never would have taken them on
emmadoggy
(2,142 posts)For the second time in a year. She also has chronic colitis, and along with the c-diff, she also has shingles. Yikes.
It's miserable.
Hang in there and don't give up.
TexasBushwhacker
(20,131 posts)You can apply here:
http://www.rxassist.org/search/prog-details?program_Id=36&PD_Id=36&Drug_Id=3149&Company_Id=30&search_type=2
In the meantime, if you haven't tried it already there's some stuff you can buy OTC called Florastor that you might find helpful. Also drinking kefir and eating fermented foods like sauerkraut can help re-establish your good bacteria.
demtenjeep
(31,997 posts)I am doing this.
thank you
Hekate
(90,538 posts) 
BigDemVoter
(4,149 posts)I know this doesn't make you feel better, but I work in healthcare and an have an of how awful it is.
cilla4progress
(24,714 posts)Turn to us if you need support. I will try to donate.
Blessings.
alfredo
(60,071 posts)demtenjeep
(31,997 posts)if it were not for student loans, that would be doable-but I can't go the 6 months without an income...unless there were no loans. Then I could swing it.
Not sure what would happen with the Kpers but if I would lose it if I went on it, I could withdraw it and use it during the 6 months...but it would all hinge on not getting denied.
its always this or that. Nothing is easy
alfredo
(60,071 posts)My family had written me off for dead. I lost so much weight I had to carry a pillow with me so I could sit down. I was in running condition, low body fact, I was cut. So the loss of so much weight really had an impact. This happened in 84, around the time AIDS was in the news. Some people probably thought I had the disease.
Let's hope it goes into remission, and you get the needed help.
Dr. Mullion Blasto
(104 posts)congee for me when I had unstoppable diarrhea. It helped I'm a vegetarian so I didn't add the chicken. I, also, left off the bay leaf, cumin and ginger - straight rice and water for me but its whatever you prefer. It puts something in your stomach. Good luck.
Congee or rice porridge. It is easy to make in a crock pot. Put up the soup before going to bed and awaken to this satisfying porridge. (Or, put it up before going to work and the soup will be ready when you come home.) I suggest using chicken stock....it is also great if you use peeled shrimp in place of the chicken.
Serves 2
½ cup rice (or barley)
4 cups water or stock
1 bay leaf
1 teaspoon minced ginger
½ teaspoon sea salt
¼ teaspoon cumin
1 chicken thigh boned and diced
1 egg, beaten
2 scallions, chopped (garnish)
Place all the ingredients in a 3-quart soup pot. Bring to a boil, lower the heat to very slow simmer and cook for at least 3 hours or up to 8 hours. (Or, place in a crock pot and cook on low for about 8 hours.) Add additional water if necessary. It should be heavy with rice but still have enough broth to be considered a hearty soup. Before service mix in beaten egg let simmer a minute or two more. Season to taste and garnish with scallions. Salt and Pepper to taste.
Congee or rice porridge. It is easy to make in a crock pot. Put up the soup before going to bed and awaken to this satisfying porridge. (Or, put it up before going to work and the soup will be ready when you come home.) I suggest using chicken stock....it is also great if you use peeled shrimp in place of the chicken.
Serves 2
½ cup rice (or barley)
4 cups water or stock
1 bay leaf
1 teaspoon minced ginger
½ teaspoon sea salt
¼ teaspoon cumin
1 chicken thigh boned and diced
1 egg, beaten
2 scallions, chopped (garnish)
Place all the ingredients in a 3-quart soup pot. Bring to a boil, lower the heat to very slow simmer and cook for at least 3 hours or up to 8 hours. (Or, place in a crock pot and cook on low for about 8 hours.) Add additional water if necessary. It should be heavy with rice but still have enough broth to be considered a hearty soup. Before service mix in beaten egg let simmer a minute or two more. Season to taste and garnish with scallions. Salt and Pepper to taste.
alfredo
(60,071 posts)The carrots had nothing to do with the MS. I think. 
demtenjeep
(31,997 posts)worth a try!
demtenjeep
(31,997 posts)some good news-some bad
HR called today and asked a couple questions leaving me to believe the short term disability is going to go through but still don't know how much time or what happens when I go back. Things are going to be so different.
The C-Diff is still present I have 2 days left of the Vancomayican. Insurance sent a letter denying the Dificid until I fail both the Flygal and the Vanco. Once that happens then I might can get the dificid. I don't understand all of that.
Maybe doc should have just put me in the hospital and taken care of it all but maybe not since I don't have an immune system.
Doc says once we get the C-Diff healed then it will be scope time and probably change biologics. My guess is after 8 years the remicade is not effective any more.
Ms. Toad
(33,992 posts)don't bother.
It was less effective than a straight dose of vancomycin, and far less effective than pulsed and tapered vancomycin.
Metronadazole - symptoms never vanished (2-3 courses)
Dificid - symptoms never vanished (1 course)
Vancomycin - taken traditional dosing (2-3 courses)
Vancomycin - taken pulsed and tapered (1 course & done.)
See and infectious disease doc, and ask about the pulse/taper regimen with vancomycin.
Vancomycin can be prepared by a compounding pharmacy for a very reasonable price. (less than 10% of the manufacturer's cost.)
demtenjeep
(31,997 posts)I get re-checked on the C-Diff next week after the Vanco is complete.
I just pray it is better so we can tackle the next problems
Ms. Toad
(33,992 posts)The pulse removes vanco from the system - the spores think it's safe to come out and play - then they get hit with the next pulse.
noamnety
(20,234 posts)what the $30,000 is for?
Is that to pay off student loans?
Is it the cost of your copay for the meds?
Is there some specific amount of time doctors said you can't return to work, and that covers your mortgage and utilities for that number of days?
