Community Forum

Hi all. I was diagnosed with Crohns a little over a year ago. I read on this site that most people live happy lives with this horrific disease. Not me. It keeps me up all night as my gut squeezes and gurgles. The pain is bad to say the least. I wake up in the morning after I finally pass out and have a "Morning Sickness" routine every day. My morning diarrhea and fatigue is so bad I can hardly walk. 6 to 10 bowel movements a day. Now I have to say, I am a 64" 210 lb (Was 250 before crohns) hockey player that can take pain and fight through fatigue. I used to be a decent income earner that worked 12 hrs a day. I was an outgoing person in general. With Crohns, I cant fight my pain or fatigue. I can hardly stand and am plain too weak to talk. All I want to do is sleep. I miss / cancel needed dr. appointments because Im too sick to go! I dont work anymore. My income is zero and I am losing it all. I applied for Social Security Disability and was denied of course. I dont eat meat, drink cola, dairy milk, and try to keep with an organic diet. I currently take dicyclomine and Cymbalta and it doesnt help. My sickness causes me to back out of social events. Nobody seems to understand.

First question I have is.. am I alone with the fatigue thing and not having enough energy to function? Is there a medicine that helps get you going?

Second question... Has anybody here ever won a Social Security Disability case after hiring a lawyer?

Thanks much in advance. I am really hoping to figure this thing out.

Gary

 Reply posted for gmarchlewicz.

Totally know how you feel. Fatigue is part of the game and it sucks. I have a 3 year old and I feel so guilty all the time because i don't have enough energy to take him to the playground. I'm like I'm young I shouldn't have the stamina of an 80 year old. It doesn't help that this diesease isn't understood. The only people who truly understand how much pain and suffering is involved are those that experience it. It is so hard to get people to understand the severity of pain you feel and the multiple areas of your life that are transformed. I think some of us Crohn's?Colitis patients are some of the strongest, toughest, fighters out there even when we feel so weak we can barely stand. I can't work either. The VA denied my disability claim for colitis for lack of evidence. I had 2 civilian doctors with positive colonoscopy dx's of colitis. Also had been in ER 6 times for complications related to a partial obstruction lost 30 pounds and 6 clothing sizes in 3 months. Had to wait 6 months to see a VA gastro 6 hours away. Was in remission by the time 3rd colonoscopy was done and results are inconclusive. So application denied. Keep fighting. You are not alone. We all fight the fight together everyday.

 Reply posted for gmarchlewicz.

I filled out all the Social Security Application myself and was denied. My lawyer said I would be. I called the attorney after I was denied. They appealed online for me in less than 5 minutes over the phone. They said that they did it as a favor and that "were" not my attorney yet. They said I will get more forms to fill out and to do so. They said I will get denied a second time. That's when I hire them. The attorney, a very well know and respected one, said everybody gets denied twice and that's when they find their loopholes. You get 1 year of back pay when you are approved. They get to keep up to 25% of it for their legal services. That's $1900/month x 12 for me and they keep $5700. Just in case anybody was wondering the game... that's how it goes.

 Reply posted for clora825.

clora, i am sorry you had to go through all of that. and thanks for your long reply. it's so *** the body and mind and my ego to go on like this. begging and feeling like people just don't care. it makes getting ahead of the disease almost impossible. i have lost everything thus far. my home is in foreclosure and i have $23 to my name. that's a far difference from the usual "padding" in the bank. i was always thankful for my life back then. things are much different now. oh well, it is what it is now. i appreciate online people such as yourself and the other responders here. i was about to flip out until i saw these responses. really, thanks. big hug! lol

 Reply posted for katya.

I thought about the support group thing. My good friend calls me the most stubborn guy on the planet. He's be proud of me knowing I'm on this forum. Thanks so much for taking the time to reply.

 Reply posted for alanschachter.

Well, I just got out of the hospital. I had rectal bleeding. Caused from a big flare up. Ouch! I was given hydro cortisone suppositories and now Pentasa. I am going to have another colonoscopy in a week. I mentioned to my GI doc that LDN is used for crohns. He had no idea. He said it has been around forever and never heard of it being used for crohns. He said it was always cheap, but said that some pharma mfr. will probably run the clinincal trials for treatment of crohns and the price will go up. Just his $.02 not knowing of LDN being used for crohns. I went on Walgreens.com. I saw naltrexone, but not low dosage. Where do you get LDN? I have to hold my doc's hand on this one. Thanks.

 Reply posted for gmarchlewicz.

Fatigue/ pain, retreat from "normal"?  Yep.  make sure your doctors have checked your B12, Vitamin D and Iron levels.  Anemia in one or any of these can take time to bring around and has a huge impact. 
Keep a health / medical journal and copies of your medical records.  This will help you with Drs, insurance, and if you choose to pursue disability.
And consider some meditation, alternative therapies like reflexology, reiki, acupuncure that are less invasive and traumatic than massage, yoga, sports.  You can easily push too hard with those and regress in symptoms or cause a flare.  Counseling, support groups, even grief counseling has been really helpful for me- Living with IBD for more than 10 years.

 Reply posted for gmarchlewicz.

Have you thought about changing to stronger meds maybe this will help.

 Reply posted for gmarchlewicz.

I know from experience what your feeling. I myself became ill almost five yrs ago now and lost everything due to IDB. I thought that I would get back and haven't yet. I applied for Social Security Disability and was denied the first time. I then appealed with a lawyer and close to 3 yrs later I was approved. The reason was beacuase my Crohns which some say is managable wasn't responding to medications and treatments. I went through a whole lot during the waiting period though just to warn you. I was found ineligible numerous times through the state assitance programs and found myself in tremendous amounts of debt due to hospitilizations and treatment. I was becoming more and more ill due to the lack of prescription coverage and inability to purchase medications. Once I became a member of CCFA I started to find different avenues to help with medication cost and spoke to my doctors honestly to see if they would help. Most states have hospital programs to assist with bills, while you may feel like a lab rat due to the quality of doctors it will keep you at least seeing someone instead of accruing ER bills. As I mentioned it was a very long journey before eligibilty. Make sure that you keep all paperwork as you will need them for later use for your lawyer. There are alot of Disability lawyers out ther who don't charge until your desicion, just make sure you stay on top of them, and look for legal aids in your state and or city who perform these cases free of charge. I wish you the best and hope that you get better before exhausting all your options. Patience was the key and not missing appointments for proof of your illness. There is a link on this site which explains in better detail how IBD became an eligible reason for aprroval earlier this year. There is also a link for applying for it as well. If need be go to ssa.gov 

Good luck 

 Reply posted for alanschachter.

Thanks Alan. Can I ask if you have tried LDN? I have been reading up on it for the past 2 hours. Seems rather promising.