Disability, Surgery, and whatever else....venting

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Regular Member

Date Joined Oct 2008
Total Posts : 27
   Posted 1/25/2009 4:36 PM (GMT -7)   
just feel like venting a bit....
i know its been awhile since i've posted on here...but i have been around, reading posts and whatnot....as some may know or remember...i was diagnosed with crohns last october, but was dealing with it before being diagnosed since dec. 07, i was in horrible shape, with all the usually hardcore flare symptoms, down to less than 120 pounds from 210, and pretty much bedridden, was in the hospital for 16 days in october, when the docs were finally able to turn this thing around, i personally give about 90% of the credit to remicade, pretty much saved my life.
since then i have applied for medicaid and ssdi, in the past month i received letters from both saying i was denied, which really wasn't a surprise since most people do get denied on the first try....so i'm in the process of appealing the decision and have talked to a lawyer who will hopefully help me with this...
what i don't get is...if i was disabled before treatment, and it would come back full force if i stopped taking the drugs, doesn't that still make me disabled?? and even if i keep taking the drugs, they could stop working at any time, making me disabled again.....and on top of that, if i'm denied disability and forced to work, i will lose all medical benefits that i currently recieve, and would be unlikely to find a job that would provide insurance, at least not one that would insure someone right away...that takes months sometimes....so without assistance or insurance, i'm left with no way to pay for my medications...which would bring the disease back full force and make me disabled......why the hell is the system set up like this....i feel like i'm screwed no matter what, unless they see the logic here that without the medication i am disabled...which means even with the medication i should still be considered disabled....so approve me already....***
whats a good ballpark figure....probably need to make around $80,000 a year or more to pay for remicade and everything else....who has that kind of money? not me...
and i'm sure my doctors need a good talking to from me about all these concerns, they need to see it from my point of view...right now i'm sure they're seeing it as they did a good job and they're proud of helping me and turning the disease around, and i'm very grateful for that, i owe these men and women my life, but at the same time they need to see that this is a chronic, incurable disease that could come back and land me right back in the hospital needing more surgeries and more drugs all of which may eventually not work.....this disease is unpredictable, anything could happen....
at the same time as all this, i have another surgery on tuesday to hopefully remove my setons and completely heal up from my abscesses and fistulas, but there is the side chance that it could go bad and they could mess up my sphincter muscles making me incontinent for the rest of my life....good times.....although that chance is very small, they did tell me it could happen, but there gonna knock me out and take a look at all the options and see what the best course of action is, hopefully i'll wake up, and it will all be good, definitely don't want to be stuck wearing diapers for the rest of my life, i'm only 29, not ready for that.....definitely not a selling point when trying to meet someone and start a relationship, well then again neither is being broke and out of work and pooping all the time and taking a handfull of drugs everyday....
alright...thats enough for now...thanks for listening...hope your all doing well
peace and love
29 years old, crohn's since december 07, fresh out of the hospital for 2 fistula/abscess surgeries, feeling much better, could it be remission???
currently taking:
lialda (4 pills a day), prednisone (down to 20mg daily), purinethol (1 pill a day), vicodin (as needed for pain), remicade (3rd IV dose 11/28)
acidophilus/bifudus probiotic, organic whole food multi-vitamins
"Flow with whatever may happen and let your mind be free. Stay centered by accepting whatever you are doing" -Chuang Tzu

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 1/25/2009 5:51 PM (GMT -7)   
I wouldn't be so pessimistic about not being able to find a job w/ insurance. Most full time jobs DO offer insurance. What field did you work in before you got sick? Do you have a degree?

If you are able to work now they are not going to give you disability. I understand that you are afraid you will lose your remicade. But use the time you do have left on whatever state program you are on to find a job you can do - hopefully it would get you through any probation period. If you were to get sick again and be out of work you then could apply for disability.

Under the ADA you do have a disability regardless of how well you are responding to medication. But that is different than the other kind of disability. I'm sorry you are in such a pickle but I wish you would give yourself more credit! Start looking for work now while you still have your benefits!
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 also take a birth control pill to allow some fun in my life.

Forum Moderator

Date Joined Feb 2003
Total Posts : 15335
   Posted 1/25/2009 7:29 PM (GMT -7)   
Hey Sully,
Gosh what a mess for sure. Its all so frustrating to say the least. Why were you denied your Medicaid when, I am assuming you had been receiving it, am I right?
As for your Remicade, contact Centocor they have programs that help pay for infusions some pay for all of it or part of it. Had I been able to continue on it, this month I was eligible thru them for help with my deductible and out of pocket expense, no kidding. But, as luck would have it, Remicade induced Lupus on me so I am out on Remicade. I am now on Humira and proud to say I think its working,lol.
As for SSD yes it a tough one for sure. The only way you will be able to even have a shot at it, is your drs must put it in writing that you are unable to do any type of substantially gainful employment. They need to give a date you became disabled and they need to state if you are still disabled from that date. You must be disabled one year to be entitled, however, new ruling is they can award and pay benefits at the 6 month mark, instead of making people wait one yr before even applying. My gi is the one that insisted a medical retired to me and I was awarded benefits back in 03 within 6 months of applying w/o a lawyer. However, I had lots of knowledge when it came to filing a claim and I am alot older than you. I don't care what anyone says age does make a difference. But, your dr has to be behind you 500%.
I  wish you best of luck and I hope you continue to get better with your health. Susie

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 1/25/2009 9:01 PM (GMT -7)   
Oh Sully...I'm not even quite sure what to say. The whole medical care system is just such a mess sometimes.
I really hope you're able to find a way out of this so that you can be taken care of. It's so scary sometimes to think about what can happen to us. It always seems like when we go to talk to people about disability 'benefits' and so forth we look perfectly normal and feel relatively okay, but the moment we REALLY need people to understand is when we're sick, bedridden, and hidden.
I just wish there were a better understanding of chronic conditions so we wouldn't have to worry about being disabled and unable to take care of ourselves.
Surely something can be done...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 1/25/2009 9:22 PM (GMT -7)   
Sully - I just re-read your post and my response. I don't want you to think I was saying I think you can go work despite your crohns. I have no way of knowing how severe your disease is. I thought you were posting that you were doubtful you could find a job w/ benefits - that is where I was trying to offer some reassurance. Hope it came across right. In other words, if you are able to work health wise, I bet you will be able to find a job. That's all!
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 also take a birth control pill to allow some fun in my life.

New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 2/2/2009 10:06 PM (GMT -7)   
I am new to this site, actually just registered tonight and wow am I with you on what you are going through....Since my divorce in 2007 I have had no treatment because of lack of insurance...applied for Social Security and denied 3 times now with the appeal being 2 years ago and the attorney told me the hearing probably won't be before Nov 2011....So I have not had any treatment, no medications and I have been suffering for 2 years now waiting and scared and hurting every day...about to lose everything here and my CD is really a mess because of all of the stress...I am now trying to atleast find a clinical trial study or something to help me out here until I can actually get Medicaid or something to help me...I am now having bowel incontinence, gurgling, back pain, low grade fevers, hot and cold sweats during the day and in my sleep, diarrhea, no appetite, and tired all the time, my teeth are a mess with pain, had swelling in my left eye that the eye doctor said could be caused from the CD which left scarring from the blisters....I have no idea where to turn anymore for help, just trying to make through each day is so hard for me anymore...Just so tired of dealing with all of the pain, depression, and frustration of not being treated and not knowing where to go for help anymore....Sorry I to had to vent. Margie

Regular Member

Date Joined Oct 2008
Total Posts : 33
   Posted 2/2/2009 10:25 PM (GMT -7)   
Holy Moly!
Thank heavens I live in Canada, because after going down to 95 pounds (from 150) and nearly losing my job because of sick time usage, I went on Remicade. After nearly two years on it, I no longer use my canes and have been in the strongest remission from Crohn's I've ever felt. In the last few weeks I feel things are ramping up again, though I'm grateful that potential treatments will be covered. Good Luck to you!

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 2/3/2009 7:10 AM (GMT -7)   
Getting on disabilty can be a long road but if you can convince your Dr's to help you like I did it can be alot easier. Now that I'm on S.S. Disability I started Remicade and it has made a huge difference in my quality of life. My Dr. told me that even though I'm doing well that would not change my disabilty status because without the medical coverage I would be disabled again so I continue getting monthy checks with no fear of ever losing that.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years. Now on Remicade, iron, and two months of prednisone. Feeling like a champ!
God Bless. Tony

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 2/3/2009 8:47 PM (GMT -7)   
I wish that there was a way I could ease your stress because I can kind of get it and its awful. I will say though that I definitely teared up from reading these posts. I'm going to school to be a social worker and I hadn't decided what field I was going to go into. I'm pretty sure now that I'm going to go into medical social work and eventually policy. Give me time guys, I'll save all of us :)
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

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