Crohn's Disease Forum » Support Forum » Vent Away » In hospital. Need support/advice

09-16-2015, 06:11 AM   #1
magy35's Avatar
In hospital. Need support/advice

hi all, I am fairly new member and only posted once before. I am 35 yo and was diagnosed over 10 years ago. I have had flares in the past that go away with prednisone and then my asacol three times a day held me well for this whole time. I had been able to hold down a job as a mental health nurse practitioner and I have basically worked since the age of 16.

To make a long story short, in matter of a month, 2 week time frame, I have lost everything. I left a stable job with benefits on a gamble with a private practice group. Since I have been fairly stable and the company promised health insurance it didn't even cross my mind that I was even taking a risk.
Well, I worked with this company 1 week and had to be hospitalized for Crohn's flare the Sunday after I started the new job. This was 2 weeks ago and I am still here. I was terminated from my new job by email based on my "performance" for the first week. AKA, they found out I have Crohn's disease and did not want to follow through on their promise to insure me starting October 1 (I am currently on COBRA from my last job). I contacted a lawyer, he said it is obvious descrimination but due to the fact that only 4 people worked at this job, I have no case against this company. (I think he said the company had to have at least 15 employees).
So, here I am in the hospital day 12. I now have no job, no insurance past the end of the month and by the way I am in a hospital with no idea when I will be discharged.

I don't know what I am going to do. Being sick is stressful and now there is this big money issue colliding with this. Does anyone have any experience with these situations? I'm new to all of it (being in a hospital, no job, ect).
I am mentally focused on moving forward but exactly where that forward is, I have no clue...

I just need support and understanding from others with Crohn's disease. I feel alone and misunderstood.

Sad face,
09-16-2015, 09:19 AM   #2
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Are you able to extend your COBRA at all? I would look into that as that sounds like your best option right now. Back when I was laid off years ago, they let me do COBRA up to 6 months I think (I didn't need to take all 6 months, but it was good to know that I had that option).

Sending you my support. It's hard enough to be in the hospital by itself, and the financial stuff sounds so worrying. I hope you're able to heal up enough to get discharged soon and can figure out the financial/insurance stuff from there. Good luck, big virtual hugs for you!
09-16-2015, 12:52 PM   #3
magy35's Avatar
Thanks for the response Cat. So, how long did you wind up being out of work? It's such a weird thing to live on the other side of a patient's perspective. I was filling out FMLA forms before and now I know I really need the time off but not sure how long I can float without work. COBRA is expensive! But I am grateful that I have the option.

Have you ever been hospitalized? If so, how long? I had no idea I'd be in here so long but reading around here it looks like hospital stays last awhile?

They just took labs this AM to identify immunity for Hep B/A and a TB serum test. When they come back negative, I was given the choice to start Humira or Remicade. I chose Humira because it seems more practical to self administer vs taking long days to infuse Remicade...

There is a lot of content in that last paragraph! Thanks for yours and everyone's help and guidance.

09-16-2015, 02:00 PM   #4
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Location: Indiana

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Hi! Sorry to hear you're going through all this, I know the added stress isn't helping you heal. Have you considered getting insurance through the exchange? I think job loss and COBRA coverage loss are special qualifying events.
Suspected Crohn's 2010, Official DX May 2015
Ileocolic resection July 2015
Remicade, Lomotil, omeprazole, warfarin, Gas-X
Multivitamin, Cal-Mag-Zinc, Vit. D, B12, psyllium husks, peppermint, fish oil, enzymes
09-16-2015, 03:24 PM   #5
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Maggie, when I was laid off it was only for 3 weeks, and I ended up being re-hired by the same company - my department had been outsourced, but there were others at the company who knew what my capabilities were and they hired me back in a different department. So I was really fortunate, I only had to do COBRA until my insurance kicked back in. I realize that isn't super helpful, I'm sorry I'm not able to give you more info than that. That was the only time I've ever been laid off. (Knock on wood!)

I haven't yet been hospitalized (quite a few stints in urgent care but they haven't admitted me so far). I hope the Humira works well for you and gets you feeling better fast. Have you done the loading doses yet? I haven't been on Humira myself, but I think I've read on the forum that relief usually starts fairly quickly after the loading doses.
09-16-2015, 07:49 PM   #6
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Hi magy35,

Just sending my support! What an upsetting and unexpected series of events dealing with insurance is so frustrating and exhausting and unfair!

Diagnosed Crohn's 2004 via 11 cm small bowel resection
Current meds: 6-MP, entocort, humira, lamotrigine, lexapro
Previous: Pentasa
Diet: everything except leafy greens!
09-16-2015, 07:52 PM   #7
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· Stoma
Oh Maggy I am so sorry.
Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

09-16-2015, 09:32 PM   #8
magy35's Avatar
Thank you all for the responses. It'a good to know I am not alone. The doctor just came by and we discussed having a colonoscopy this Friday to rule out viral or fungal causes for my continued symptoms while on 90mg IV solumederol.
Is it weird that I am actually looking forward to taking a little propofol nap on Friday? I think the longest stretch of sleep I have had in the hospital has been maybe 3 hours?

Thanks for the well wishes and keep 'em coming. Lord knows I need them.

09-16-2015, 09:47 PM   #9
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Maggy, I'm hoping that things turn around for you very soon. I hope you feel better tonight.
09-17-2015, 11:53 PM   #10
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The hospital is the last place anyone is expected to get the needed rest to heal. No, looking forward to the propofol sleep is not abnormal in your circumstance. I ended up in the hospital 2 times this year and after the second time I went back to work only to be let go. Unfortunately going after your employer may be a long and difficult road, although you may have a case.
Talk to a lawyer who specializes in this type of law if you are determined.
I have never done it because the stress involved never seemed worth it. This is the second time in my career I found myself let go after major surgery so I can completely feel your pain and frustration. Stay strong!
My first surgery I was in the hospital for a long time but don't let it worry you I had a major infection they wanted to hit with IV antibioticts before they operated. This last time I was in for 8 days, and out of work for a month on temp. disability. Your doctors should be able to let you know how long you will need to be hospitalized. I hope you find the answers you need and please know you have support! It is sad in this day and age that things continue to become more difficult with regard to health insurance. The most important thing to focus on right now is getting yourself well again, the rest will fall into place after that. If you cant afford to continue COBRA look into the exchange you might find something that works for you.

Most important is to know you aren't alone and there are those of us who feel your pain. Hope you get well and know you have support!
Aggressive Crohns, Major Resection 2005, Total Protocolectomy 2015; Humira every other week.
Have been on just about every type of med., major perianal disease for 10 yrs. prior to ileostomy.
Stay strong never quit.
09-18-2015, 09:29 PM   #11
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So sorry you are going through this. It sucks.

09-18-2015, 11:18 PM   #12
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Join Date: Sep 2009
Sorry to hear, not a good situation at all.

Hope you get this flare under control. My advice would be to watch your diet to help get things under control with the meds. If you have a chance to read breaking the vicious cycle, it advises avoiding lactose and sucrose and this has helped me greatly so eat cheese instead of milk for calcium and avoid refined sugars including soda. It wont stop every symptom but it will reduce the severity. Also try psyllium husk(fiber but not metamucil try vitamin shoppe) combined with high quality multi strain probiotics. There was one study that put people into remission and reduced mean CDAI by 230 points.

if it helps let me know!
Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
09-19-2015, 01:10 AM   #13
A ja
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Join Date: May 2015
Hey Maggie
Good lord this is one hell of a situation you are in...i just really wanted to send you a virtual hug from over here in switzerland and i hope that things will change for the better shortly (im sure with humira it will)
U can get through this!

09-25-2015, 11:25 AM   #14
magy35's Avatar
Thank you all for your support and wisdom. I am finally home from the hospital after 17 days! I started remicade while in the hospital and here I am a few days later feeling a huge turn around in my symptoms. Pain and cramping have significantly reduced.
I do agree with the sentiment that going through a legal battle with my former employer would be too much stress. I did wind up having a lawyer friend handle communications with them. They attempted to interact with me to get things I was given for use at work by threatening to involve the police. I decided to just hand over communication to a lawyer (who is also a friend so no charge) just to avoid stress related to those interactions.
Above all, I am happy to be home, grateful to live in the age of remicade and beyond thankful that my cobra insurance covers all of the cost!
Thanks again. I think this is a wonderful source of strength and always good to know I am not facing this alone and I have your experiences and strength to guide me.
09-26-2015, 11:00 PM   #15
Join Date: Aug 2015
Location: New York, New York
Hey Magy35, Happy to hear that Remicade is helping you feel better! Good move having your friend/lawyer be in contact with your previous job.
Just in case you don't know, be in touch with your infusion center's billing department to sign up for the Remistart program--its run by the company that produces remicade. Basically they will cover the remainder of the cost of the infusion after whatever your insurance covers (which is typically calculated based on your deductible), so you won't have to pay (although you will still need to pay for whatever your insurance hasn't covered for administration costs). I just started remicade as well, and am grateful to have signed up because my copay for the drug has dropped dramatically….
09-26-2015, 11:46 PM   #16
magy35's Avatar
Thanks Dr mommy for the advice. How are you doing on remicade?
09-27-2015, 06:52 AM   #17
fuzzy butterfly
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Hi Maggie, just read this thread , what a nightmare you have had , i am so glad to see the humira is helping you now, i pray it continues to do so hun. unfortunately im in the uk n cant help with insurance stuff n the disability laws may very where you are, but yes it is discrimination by your employer, but some of them wont actualy admit they got rid of you cause of your crohn's n try to make up some other reason which can be hard to prove otherwise . glad you have a lawyer friend who can maybe help you sort all this out for you. from what i can gather here the others have come up with some good advice n suggestions, so give them a go, i guess you would have nothing to lose by trying them hun.
my thoughts n prayers are with you, and i hope you and things get much better soon, take care x

6yrs since dxd. 4yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
09-27-2015, 07:13 AM   #18
magy35's Avatar
Thanks MandyK

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