I'm so scared and depressed talked to surgeon

[cleuger]

Well I am scheduled for surgery on the 28th of August they are removing my colon and rectum as they are to diseased to reconnect to anything I will have a permanent bag Does anyone here have that? I really need support on this one
Thanks in advance.

 

[nogutsnoglory]

I'm sorry to hear you need to have surgery. Many of us have dealt with ostomies, some temporary and others permanent. We have a great forum for it here http://www.crohnsforum.com/forumdisplay.php?f=46 it's a very hard thing to get used to physically and emotionally so don't hesitate to voice your fears and concerns.

My best advice is to get as many samples from the major companies as possible to see what's best for you. After your surgery call hollister, coloplast, convatec and others because those are the big ostomy companies.

 

[lenny]

I'm very sorry. What an awful disease this is.

 

[cleuger]

How expensive are these bags I'll be loosing my insurance as of December due to divorce. I'll have to figure out expense I have a good job as long as I don't loose it over this surgery down time however I do not have health insurance through my job it's my ex's insurance. Any advice ??

Thanks I'm still trying to wrap my brain around the thing.
It's not bad enough that I've been an emotional nightmare over my divorce and now this.
Any advise is greatly appreciated.

 

[lenny]

Do you have to legally divorce? I've always said that I would never legally divorce my husband, even if we didn't want to live together anymore because I'd loose my health insurance and my husband agrees. No matter how we feel about each other, we plan to stay legally married.

I'm the mother of his children and he knows any financial burden that I had to face, would also affect our children.

 

[cleuger]

No our divorce is not final he's the one pushing not me but he doesn't even like our son he has issues. I play nice though because I desperately need the insurance he likes to hold it over me. We live in separate homes I have mine he has his. I've had meltdown several times on this board over him. I'm actually over him and I'm able to think a lot clearer. But he says the new company that bought his old out is the one that says spouses can't be covered I've never heard of any such thing.

 

[lenny]

Marriage is a legal contract. He's breaking it and should face the financial consequences of breaking it. He should share equally in the added expenses you will incure because you will no longer have health insurance.

As one cannot simply walk away from the stay at home parent, I can't believe one can simply walk away from a seriously ill spouse...can they?!

Have you spoken to an attorney? Your husband might decide the cheapest way to go is to provide you with health insurance.

 

[nogutsnoglory]

I can't speak to insurance and divorce but I'm sure many here can be of help. You may have more pull than you think. I think there is some safety net akin to cobra for dependent spouses.

Have you looked into plans on the ACA? Ostomy supplies can run you into hundreds per month depending on what you need without insurance. at the bare minimum I would think you couldn't get by spending less than $150 monthly.

 

[cleuger]

No I haven't I don't have money for an attorney I spent most of my savings buying us the home were in. I've missed a lot of work due to my health I'm scrapping bottom now as it is. He pushed us out and told me to take whatever stuff I wanted which I did but was limited due to not having a truck to move it with. I just got out of the hospital today and he text me because he wanted to know where one of his dvd's is. So now I worry about paying for supplies as I'm scheduled to have colon and rectum removed on the 28th not sure what I'll do. I guess if you don't have it you don't buy it. I'll cross that bridge when I come to it I guess I'm worried about getting through the surgery.

Thanks cindy

 

[cleuger]

Oh boy well after December I'll be in trouble unless by some luck he keeps me covered or I can find something when they have open enrollment in November for Obama care . I have a type 1 diabetic kid also but his dad has to keep him covered till he's 26 I think I read.

 

[blackli]

Can you apply for legal aid for a lawyer? I'm not sure as I am in Canada and we have that for those who can't afford legal advice. Also, if he is divorcing you, there should be some allowance for your disability with no health insurance. Again I can't speak to legalities, but he should have to provide for your health if yiu are defendant on his plan now. I wish you the best!

 

[cleuger]

I've been on his plan for years we do have legal aid not sure if that's something i have to qualify for but I can check it out on Monday.
Thanks for the advise.

 

[lenny]

You say that you bought a home, can you rent out a room to supplement your income?

 

[Cosmojo]

Don't forget about healthcare.gov or if you really can't work due to your illness there is disability.

 

[M West]

Cleuger.

You will qualify for "obamacare" when you lose current coverage. Losing current coverage is a qualifying event and allows you to register and qualify for Obamacare immediately.

As to your soon ex. I would sue his a-- off particularly to protect your son.

ask friends, relatives, neighbors etc. for attorneys they may know or have used. The Legal Aid office in your town may be able to advise. A decent lawyer can put your ex as responsible for your legal expenses as part of your divorce settlement. Judges don't take to kindly to deserters where children are involved. Sock it to the louse!!!!:

Even though you are the one dealing with the shock and physical nightmare, please get the courage and desire to do what is right for your son.

I am thinking of you!

Best
Miles

 

[cleuger]

You say that you bought a home, can you rent out a room to supplement your income?

I am actually renting a room to my older son who was out on his own he is helping out he gives me 400 a month and helps around the house I figure that win for all of is. I knew I was going to have to do something I spoke to my boss today told him I would be in on Monday and gave him the dates for doctor and surgery and try to come back to work after surgery as soon as possible he's and understanding boss for that I'm grateful.

 

[cleuger]

I planned to apply for Obama care I though I had to wait for open enrollment I'm November? If I don't I'll be applying now. You know I told him that we were suffering as far as finances he told me to have our son get a job that's a great notion And he wants to but I told him I want him to focus on school. Our son is a type one diabetic of which yes his dad is paying insurance but I do all the doctors visits and copays and anything else he needs. Plus I have to deal with my damn disease yeah karmas a B**ch. he doesn't do or give him crap most of our local attorney will rake you over the coals. I'll check into legal aide

Thanks he is a louse!!!

 

[Heart&Guts]

If you lose your insurance under certain circumstances like job loss or divorce, you can sign up for Obamacare any time, not just the open enrollment period. Open enrollment is when anyone can sign up, even if they don't meet any of those qualifying conditions.

I've been through a divorce that I didn't want, and I agree it's something that takes a lot of time and effort to work your way through. I'm sorry you're having to deal with these monstrous medical and financial issues on top of all the divorce stuff. The good news is that insurance eligibility isn't something you have to worry about.

:hug:

 

[cleuger]

Thank so much you guys are wonderful and I feel better every time I come to this board you have given me hope for a future. A couple of weeks ago I just wanted it to all end I didn't feel like I could go on anymore but even with the surgery that IM about to have I feel a lot better. I'm scared but I still feel better emotionally. Ill be looking into Obama care tomorrow. If it wasn't for the people on the forum I can honestly say I was on the edge of ending it all you guys are my rock and support and for this I thank you.

Cindy

 

[cleuger]

Don't forget about healthcare.gov or if you really can't work due to your illness there is disability.

Do you know if there is such a thing as temporary disability for social security? I do hope and plan to go back to work but I have missed so much and I'm going to be missing a whole bunch more with surgery its gotten to the point I've exhausted all my savings and now have turned to my credit cards. My older son is paying rent to me but that doesn't even cover my mortgage. I was in hospital last week returning to work Monday then off again for a day then working till the surgery the 28th then I guess well have to see. I am trying hard to be positive.

Thanks
Cindy

 

[M West]

Cindy,

Apply as soon as you can for SSDI. Social Security Disability. It will take a minimum of 5 months for ruling on your case. You can hire an attorney familiar with SSDI and they will take a percentage of your award.

Social Security does have a program for return to work without losing your benefits if it doesn't work out.

I am 63 and have been in some deep financial binds due to Crohn's. They all worked out eventually. Your's will too if you will take the bull by the horns and refuse to be defeated.

Best,
Miles

 

[Flarkie]

Hi Clueger,

So sorry to read the horrible situation that you are in. I want to answer your question and try to help on the medical issue. I am what they call here in Holland a; experience-expert...unfortunally.
Its such a great thing to read do that the people on the forum seemed to know alot about the USA healthcaresystem. And youre atleast under these hard surcomstances helped with this.
About the surgery, I know what it is to have either operations that include ostomy, drains, resections, abscess, fistula, etc.. In my opinion you might be helped if:
1. you trust your docters
2. you are sure that all other medical or surgical problems are either helpless or already been tryed in a properly and qualitively good manner so you are left with the surgery that includes a illeostomy.
3. the operation gives you a signifficantly better quality of life

Wish you all the best and good health!

 

[cleuger]

Cindy,

Apply as soon as you can for SSDI. Social Security Disability. It will take a minimum of 5 months for ruling on your case. You can hire an attorney familiar with SSDI and they will take a percentage of your award.

Social Security does have a program for return to work without losing your benefits if it doesn't work out.

I am 63 and have been in some deep financial binds due to Crohn's. They all worked out eventually. Your's will too if you will take the bull by the horns and refuse to be defeated.

Best,
Miles

I actually did apply for SSi but things are changing so quickly more hospital stays etc.... When I went to their office a few weeks ago I had to sign something I had forgotten the lady told me because I work there is no help for me. I tried to explain to her about all the missed work and the fact that I will be out again for 6 to 8 weeks she said it didn't matter I am still employed. within the last couple of months I have missed probably 6 weeks of work and looking at missing more due to surgery. Do you have to get attorney for the return to work SSI. I do plan on going back to work I'm just down for a while, while I have surgery and heal. Im applying for Obama care tomorrow since I am continually being threatened about loosing my health care from EX Ill need to find time to call social security tomorrow to ask about the return to work SSI

 

[around the corner]

Make sure you apply for SSDI not SSI. SSDI is State Social Disability Insurance, SSI is State Supplemental Insurance. Hope you feel better soon physically and emotionally. Hugs and prayers for you.....

 

[around the corner]

I googled, copied and pasted for your info:

What's the Difference Between SSDI and SSI?
Time and circumstances are behind differences
by Stan Hinden, AARP Bulletin, June 13, 2012
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Q. Can you explain how Social Security Disability Insurance (SSDI) is different from Supplemental Security Income (SSI)?

A. That's an important question. The initials of the programs are so similar that it's easy to confuse the two.

See also: How to maximize your check.

SSDI is an earned benefit that focuses on physical and mental impairments that are severe enough to prevent people from engaging in their normal occupations or any other work. Their impairment must be expected to last for at least 12 months or to end in death.

How to Apply

To apply for SSDI, visit your local Social Security office, call 1-800-772-1213 or fill out the forms online at this SSDI Web page.
To apply for SSI, go to your local Social Security office, call 1-800-772-1213 or fill out the forms online at this SSI Web page.

SSDI benefits can be paid to blind or disabled workers, and like Social Security retirement benefits, to their children, to their widows or widowers, and to adults who haven't worked but have been disabled since childhood.

SSI, meanwhile, pays benefits to low-income people who are 65 or older; to adults who are disabled (based on the same definition used by SSDI) or blind; and to children who are disabled and blind. The program is only for people who have very limited income and assets.

Another key difference is how the two programs are financed. SSDI is funded by the Social Security taxes paid by workers, employers and self-employed people. SSI, on the other hand, is financed by general revenues that the Treasury Department collects to run the U.S. government.

Why the differences? The two programs were established at different times and under different circumstances.

SSDI dates to 1960, when Social Security's rules were amended to permit payment of benefits to disabled workers of any age and to their dependents. These benefits were based on the person's work record, as are retirement benefits.

Winning approval for SSDI benefits can come quickly if you've got one of the serious medical conditions named on Social Security's Compassionate Allowance list.

Otherwise, you should expect a longer process.

 

[M West]

Cleuger,

You are either working (able to work) or disabled in the eyes of Social Security.
You must be ruled disabled, receive benefits from Social Security, and then you can return to work on an approval basis from Social Security on a trial basis without losing benefits. An attorney is not entirely necessary for this process.

You need to become familiar with the Social Security process by reading their website. Google your question and search the internet for your answer. Or you can make an appointment with your local Social Security office and let them walk you through the process.

Seems to me that the bridge you need to move forward is alimony and child support from your ex. My advice would be to go after him first while you get ready for the next stage of you and your son's life. By the way, he is a handsome boy by his photo.

I hope that the surgery will give you much needed physical relief. Sure, life will be different, but surgery may give you the physical boost you need.

Best Wishes. I continue to think of you.

Miles

 

[cleuger]

Thanks Miles that little boy in the photo is my grandson thank you my son is 17 ill go the social securities website and read maybe even google my questions as you said . Thanks
Cindy

 

[M West]

You can do it Cindy!

Whatever it takes you seem the type not to give up.

Please let all of us know how you are getting along. I'm expecting something good from you.

Good evening,

Miles

 

[leezapeza]

I'm right with u on this one I don't have to have an op as yet but it early days for me just got diagnosed in July am on pred it has helped but coming off it I'm putting heaps of weight on I'm a little scared too hang in there we r all here for u

 

[cleuger]

Hello everyone I called social security today as I had applied but never heard anything back I will be going to their office first thing in morning to fill out form 821 I guess its a work history form. I also went ot the healthcare.gov website. I will need insurance as I am to have a stoma and not sure how much the supplies cost. I just want you all to know how much I appreceate you being here for me. Im at work right now and had to take a half a xanax Im panicking so bad over this surgery. Any words of comfort would be appreceated I will probably dwell on this till I have it. Im sorry if Im a pain in the butt.

Thanks so much

 

[M West]

Way to go Cleuger!

Despite your physical condition, keep pressing until you get the answers you need.

I am indeed sorry that you have to go the surgery route, but you just may come out on the sunny side of all the darkness you are experiencing now.

So much of our health, I believe, is directly a consequence of our state of mind. My opinion only. If you can only find one thing each day on which to focus (only positives allowed), your surgery will not take the front seat.

You have made several steps forward today. Pat yourself on the back and get ready for tomorrow.

I'll lift my glass (coconut water) to you this evening.

Best,
Miles

 

[Grumpy1]

Cindy,

It seems to me that the worst is over, you have gotten a diagnosis, are having surgery, have gotten rid of some really bad luggage (miserable waste of skin ex) and have 2 wonderful sons. You have followed through with all the suggestions from everyone regarding SSDI and insurance, and now you need to relax. You are strong and no matter how much you would like to say the words written here have gotten you through to this point -- you have gotten you through to this point; the people here are just guiding and cheering you on. You can do this... just relax and breathe and trust in yourself and with a little help from your "friends" you will make it through this with flying colours. We are all here for each other. Today the words and genuine concern are for you tomorrow your words and genuine concern will help someone else over that rough patch. :hug:

 

[cleuger]

I want to let everyone know I did go to social security and I have to fill out a work history form and drop it off. I've noticed as I get closer to the 28th getting more jittery knowing I'm going into surgery. I'm not as emotional as I was that's much better but I'm still scared. I seem to be the panicky when I first get up in the morning then around afternoon at work. It's horrible anxiety I'm having. I hope they do give me something to settle me down before hand. I just want it to hurry up and be over with so you know of anyone has ever died from this surgery? Just asking all surgery has risk even though it's not like having open heart surgery it's still a big surgery.

Thanks so much

 

[Grumpy1]

I want to let everyone know I did go to social security and I have to fill out a work history form and drop it off. I've noticed as I get closer to the 28th getting more jittery knowing I'm going into surgery. I'm not as emotional as I was that's much better but I'm still scared. I seem to be the panicky when I first get up in the morning then around afternoon at work. It's horrible anxiety I'm having. I hope they do give me something to settle me down before hand. I just want it to hurry up and be over with so you know of anyone has ever died from this surgery? Just asking all surgery has risk even though it's not like having open heart surgery it's still a big surgery.

Thanks so much

It's a huge surgery every bit as important as open heart and more so because they are doing it to you - so you have every right to be jittery. I think you are doing amazingly well, truly. I get nervous if I have to go to the dentist for crying out loud. That's why I said that you are a strong woman and you will be fine. Scared is good, nervous is good - its those people that aren't that you have to be worried about. I probably didn't express what I was trying to say before very well but I truly think that you are amazing for dealing with what you are going through and I wish that you didn't have to.

 

[cleuger]

I dont know If I can do this. I didnt know it was comparible to open heart surgery. I mean I knew it was major but open heart isnt that like the ultimate of surgeries? I dont know if Im strong enough physically and mentally make it through the surgery. Im not trying to be a (debbie downer) This is just how I feel right now. I try to stay busy getting my stuff in order insurance, Income etc... My son isstarting back to school focsing on getting him ready you know school clothes folders, paper etc... Plus I work so that keeps me busy but when Im not staying busy this is heavy on my mind.

Yeah Im not fond of the dentist either I have to be honost Im not fond of doctors either but when you have an ongoing chronic illness you really dont have a choice.

 

[Grumpy1]

I don't think that it's quite as bad as open heart surgery - my point was you feel it is because it is on you. You have every right to be nervous and you'll be fine. I hate doctors too! I think before this happened I saw one every couple of years if I absolutely had to otherwise they just phoned a years renewal on my prescription to the pharmacy - now I feel like I live with the suckers. And worst of all - they phone me I don't have to call them - what's up with that when you're at home. I work also full time and I take care of my 86 year old mom who has Alzheimer's and lives with me so sometimes my brain goes faster than my fingers when typing and I miss important sentences - so if I seem short or miserable, I apologize that was never my intention. I believe that you can do this you have already been through so much this is going to be the easier part of it all. You're not a Debbie downer your scared I would be too and I wish that you didn't have to face this ever - but I truly think that you can do it!!!!

 

[2thFairy]

An uncomplicated colectomy is a major operation, but not as high risk as heart surgery. Do not scare yourself like that. I've seen several performed.

I think what Grumpy1 is trying to say is that feeling nervous and panicky is normal, just as it would be for any other surgery.

 

[2thFairy]

(you beat me to it, Grumpy1!)

 

[Grumpy1]

(you beat me to it, Grumpy1!)

Thank you, thank you, thank you.... brain in over drive fingers not as fast - sorry!

 

[cleuger]

Thank you for breaking it down for me I wonder sometimes if I dont have ADD and thats no joke. I panick pretty easy. When I came out from under the Anesthesia from when they recently did my colonoscopy and endoscopy I was under for 2 hours and I rememeber when I woke up the nurse asked me why my heart was racing. How in the heck do I know? then she said I was using all her paper coming from her machine that monitors the heart. I think she was joking but every time I would hear that thing spit out paper I would ger more anxious. I might have been having a panick attack I dont know but that kind of freaked me out.

 

[Grumpy1]

She'll just get more paper - they have reams of it....don't panic. anesthetic makes everyone a little groggy and out of it you're not alone there.

 

[nogutsnoglory]

I think you are currently on COBRA, if not you can get COBRA for up to 36 months.

You are eligible to continue your COBRA by an additional 18 months after the initial 18 is exhausted.

http://www.dol.gov/ebsa/faqs/faq-consumer-cobra.html

"Q14: Is a divorced spouse entitled to COBRA coverage from their former spouses' group health plan?
Under COBRA, participants, covered spouses and dependent children may continue their plan coverage for a limited time when they would otherwise lose coverage due to a particular event, such as divorce (or legal separation). A covered employee's spouse who would lose coverage due to a divorce may elect continuation coverage under the plan for a maximum of 36 months. A qualified beneficiary must notify the plan administrator of a qualifying event within 60 days after divorce or legal separation. After being notified of a divorce, the plan administrator must give notice, generally within 14 days, to the qualified beneficiary of the right to elect COBRA continuation coverage."

 

[cleuger]

I think you are currently on COBRA, if not you can get COBRA for up to 36 months.

You are eligible to continue your COBRA by an additional 18 months after the initial 18 is exhausted.

http://www.dol.gov/ebsa/faqs/faq-consumer-cobra.html

"Q14: Is a divorced spouse entitled to COBRA coverage from their former spouses' group health plan?
Under COBRA, participants, covered spouses and dependent children may continue their plan coverage for a limited time when they would otherwise lose coverage due to a particular event, such as divorce (or legal separation). A covered employee's spouse who would lose coverage due to a divorce may elect continuation coverage under the plan for a maximum of 36 months. A qualified beneficiary must notify the plan administrator of a qualifying event within 60 days after divorce or legal separation. After being notified of a divorce, the plan administrator must give notice, generally within 14 days, to the qualified beneficiary of the right to elect COBRA continuation coverage."

Your awesome thank you for posting this information, I did not know this. Health insurance to me is like water I cannot live without either one.