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crohn's and veterans

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Crohn's Disease
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Posted 12/12/2007 4:00 PM (GMT 0)
My husband is a Vietnam Veteran and suffers with this disease Crohn's. He is on 40 mg of prednisone a day (for over 10 years now) and takes about 140 pills all told. he has severe joint pain, joint swelling, and every other side effect related. Does any one else have NO family history and was exposed to agent orange? He was a paratroop w/ 173rd. I think this exposure compromised his immune system. This illness is despressing and is slowly killing him as his ability to do anything, dress, lift things, provide for us has all been taken away. The VA will not spend money on new drugs for him. We are doing our best but blockage after blockage, elevated white cell count, prednisone addiction, and the pain are all I can handle in a single day while trying to work and take care of the farm and children. I could go on for days but basically is USA accepting any responsibility for this illness re: agent orange?
Posted 12/12/2007 4:09 PM (GMT 0)
I don't know anything about agent orange and crohns, but where is your husband getting treatment? 10 years is a long time to be on Prednisone (which I'm sure you're aware of), have they tried other medications? There are so many now, the new biologics may help, and Methotrexate is used for Chron's as well as joint issues. I'm wondering if a second opinion may help? Because your husband is a veteran, shouldn't the VA take care of him regardless of the cause of the disease?
Posted 12/12/2007 4:49 PM (GMT 0)

Actually the pred is what all his illness is related to and no the VA does not have to treat you for free if your illness is not service related, also due to money issues with the VA they are reluctant to try more costly meds, we were just told 12/4/07 that Remicaide effects are worse than Pred and can cause liver damage and so on but my hubbys liver and kidney function are very good considering. We have a GI appointment 12/18, they want to operate due to blockages but they say he will bleed out. What a mes, what a stress...I appreciate your kind and fast response, I am isolated with this whole situation. Thanks 

Tess 

Posted 12/12/2007 5:25 PM (GMT 0)
I'm so sorry about the lack of coverage from the VA. Also, all VA's are not created equal. Where are you located? My father-in-law was treated here in San Diego at the VA, and I have nothing but wonderful things to say about each doctor, nurse, and technician that he saw and he had the latest and best level of care. The San Diego VA is affiliated with a university, UCSD, so they get some pretty good doctors.

Is he being treated at the VA or another hospital? Your doctors, wherever they are, need to get a little more educated on the medications now used to treat Crohn's Disease. There are risks with all the drugs we take, heaven knows I've seen some firsthand, but the best thing about the rest of these drugs is that they're considered "steroid sparing" drugs. And there's a whole tier of drugs between the steroid stage and the biologic stage that your doctors are ignoring, Imuran, 6MP, methotrexate.

As far as surgery for your husband, yes taking the steroids, especially for such a long period does increase the risks. Unfortunately, if he has an obstruction you may not have a choice.

It's possible that they have tried to get your husband off the steroids, but his symptoms always returned. That's a hard spot to be in, many on here are in the same boat. But eventually, they need to switch him over to something else, steroids are just not supposed to be used long term unless you just can't take any of the other medications because of adverse reactions.

I hope your appointment sheds some light for you next week. Hopefully they will feel that they can control the issues related to the long term use of steroids if his surgery becomes necessary.

Please keep us informed and don't hesitate to ask questions. That's what this forum is for, it helps all of us to feel we're not so alone.
Posted 12/13/2007 6:05 AM (GMT 0)
hey tess. yes please do check with someone. i have been treated by the VA since '85 part time and full time since '02. all the meds for crohns IE; remicade, entocort, prednisone, humira, etc... are on the formulary and are dispensed when ordered. although i was not exposed to AO, i know several vets who were not either and have CD and get care at the VA. i would seriously see about getting them to refer him to a GI clinic at a major university or such and start getting off the prednisone and such. he may even start to feel better without all the meds in his system. also have him see a veterans help group, such as DAV, VFW, AmVETS, Am. legion etc... and either reaply for benifits or for an updated rating. even if he is not service connected he should be able to be seen for little or no cost. an advisor with one of these groups knows which buttons to push and what phrases to say on the applications. its all in the wording and remembering sugar goes farther than vinegar!
Posted 12/13/2007 6:08 AM (GMT 0)
Just wanted to add that there are lots of veterans on here and you should be hearing from some more soon.
Posted 2/23/2010 2:06 AM (GMT 0)
We have no family history of Crohn's disease.  My son had about a third of his intestines removed and has been dignosed with Crohn's.  I spent a year in country with no Crohn's but my first born has the disease.
Posted 2/23/2010 11:53 PM (GMT 0)
As far as the Remicade having worse side effects that prednisone, I have to disagree. Remicade is the only med that has ever helped me. Prednisone has left me with bad joints. I concur with Randynoguts. Keep asking the VA!
Posted 2/24/2010 12:22 AM (GMT 0)
I am the son of a Vietnam vet who was exposed to AO. I am currently an active duty MAJ in the Army with 12 yrs of service. Currently on remicade only. No one else in my family has it or any autoimmune issues. My dad has some problems but none related to AO that we know of.

I hope the VA can take care of me when I need them!
Posted 2/24/2010 4:56 PM (GMT 0)
Former58D,
I wondered how you managed to stay on active duty? Was it the remi? about the VA it is sometimes a toss up. Part of the issue for me is that I have never been out of flare since before I was dx in 05.
Navy
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