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Back from the rheumatologist....

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Crohn's Disease
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Posted 6/4/2010 12:57 AM (GMT 0)
My hubby went to the rheumatologist today.  His jaw is killing him, his back is killing him, his wrist is killing him, and his shoulders are starting to hurt.  He is beginning to feel a flare coming on, but basically just got over one.  His mouth broke out in a cold sore over the weekend, and that generally means stomach upset. 

I am so aggravated.  He can't be 100% honest about how bad he feels because he is scared to death of the medical board.  I told him staying in the Army for the next 4 years isn't worth his life.  I am scared of the medical board too, but I can't stand seeing him suffering.

He is on Asacol, but I don't think it's doing him much good.  It might work better if he could take it correctly.  He REFUSES to swallow pills.  Always has.  So he chews them up.  That's not how they are supposed to be taken and he knows it.

The rheum today said he probably has sacroiliitis.  They took an x-ray.  He also ordered a blood test for the gene that is supposed to be an indicator of something or other.

I am honestly worried that it's just a matter of time until he gets a blockage or a tear or something.  But he's so stubborn, I don't know if he would even tell me if he thinks something like that is going on. 

I want to help him, but I just don't know how.

Posted 6/4/2010 1:01 AM (GMT 0)
Oh, and the doc put him on Mexolicam too. I'm worried that it is going to irritate more. Doc said it might be worth the risk. I guess time will tell.
Posted 6/4/2010 1:19 AM (GMT 0)
I am wondering if it might be time to go see a civilian doctor completely offline to get a realistic picture, that does not have to report to the military due to any insurance reasons, etc?
Posted 6/4/2010 1:25 PM (GMT 0)
I agree 100% with MMMNavy here, maybe seeing a civilian doc might be a good idea. And as for chewing the Asacol, that is a mistake. Its a time released med and does not release the med until it reaches the intestines, so he is kinda making the med not work. JMHO
Posted 6/4/2010 2:00 PM (GMT 0)
Unless you're going to pay out of pocket for the civilian doctor (and I'm guessing he's seeing one as it is) TRICARE requires the doc to send records to the MTF as a qualification for payment. It may be time to move up to another drug other than the 5-ASAs.
Posted 6/4/2010 3:25 PM (GMT 0)
tuper: he's in denial in my opinion. Has he had any surgeries yet - because handling his disease the way he is he's heading toward one IMO. I'm not in the military so I don't know how this works but with a chronic disease, does it always leads to a discharge? Can't they assign him duties that would allow him to work at a desk or something?
Posted 6/4/2010 5:27 PM (GMT 0)
Tuper, I am a crohnie who's had the joint pain all over - haven't needed surgery [yet], but I do take my meds (mostly). I'm sorry your DH is not compliant with his meds, and is not willing to address his pain honestly. I really don't know that you can make him do anything - I have a husband who is stubborn in his own ways and it makes marriage ... interesting, LOL.

Your husband can be B27 negative and still have sacroiliac arthritis. I do, and I'm B27 negative. I think the rheumatologist will tell me next week that I likely have ankylosing spondilitis, which can come with Crohn's even without the B27 gene.  This condition often starts as arthritis of the sacroiliac joint.

Your husband should take prednisone to address the joint pain in the short term.  I think they have a liquid form that they give to children.  He can get rid of all that pain with a few weeks of medication.

I agree that if he is unwilling to swallow pills, he needs a different medication protocol that doesn't include pills! I believe some of the immune modulating meds are delivered with injections or IV. That is the way to go.  He must tell the DR that he cannot swallow pills (will this be enough for a discharge??).

I had a friend with stage IV cancer who had a boatload of pills to take daily. Even though he'd been in treatment for 12 years, and even though his life literally depended on taking those pills, he still struggled with it every single day. One of his pills he affectionately called his "4 hour pill." Because it took him 4 hours to swallow it. Seriously.

Post Edited (kazbern) : 6/4/2010 11:31:50 AM (GMT-6)

Posted 6/4/2010 6:44 PM (GMT 0)
Thanks for all the replies.

I'm just frustrated, mostly.  He does decent at watching his diet.....he LOVES his beer but hasn't touched one in over a year.  I've tried to argue with him about the pill swallowing thing, but it's psychological.  He thinks he is going to choke if he swallows a pill.  His dcotors already know he chews them up, he told them.  They told him not to, and that's about it.

We have discussed him seeing a doctor on the side, but we just couldn't afford the meds without the insurance.  They have already asked him if he wants to go to the med board, and he has said NO!  Yes, this is a disease that can get him discharged, even at a desk job, which he has.  He is furtunate that his military doctor is very willing to work with him and keep him away from the med board as long as he can.  Because if he goes to the board, he will get put out.  If he gets put out with less than 30%, we are on our own with 4 kids, no insurance, and no job.  (We know a lady who has had surgeries from CD that was only given 10%....he hasn't had any surgeries yet.)

Both his father and sister have CD, and both have had multiple surgeries and problems.  I know it's just a matter of time before all this happens to him.  But he only has 4 more years left in the military before he retires anyway, and he desperately wants to make it till then.  I know it sounds silly to put a career before health, but this isn't just his career, it's his life....

Sorry, this turned into more of a rant!

 

Posted 6/4/2010 7:27 PM (GMT 0)
Just curious it has been MANY years since my ex husband was in the Marines, but we saw an outside doc and took the prescriptions to the military hospital to fill and didn't pay for them. Couldn't you take the prescriptions from an outside doc to the military pharmacy to be filled?
Posted 6/5/2010 2:05 AM (GMT 0)
Nanners - it is still that way. You can also take prescriptions from an approved referred dr. to participating civilian pharmacies which is what I do because I can't stand the military pharmacy even though it is a 5min walk from the house.

Tuper - there are many stories out there about ratings for Crohn's from the PEB, but my military doc is pretty adamant that I should do well.

Why not move up to 6MP/Imuran? Being that his father and sister have it I'm sure they've been on higher stuff. I know several military members on Remicade/Humira who are doing quite well and not at risk of an MEB.
Posted 6/5/2010 1:08 PM (GMT 0)
Or even MTX, just something that will actually treat his disease instead of basically not taking the pills in such a way that they are not effective, which basically leaves his disease untreated.
Posted 6/5/2010 2:34 PM (GMT 0)
You don't mention if your husband has crohns in his terminal ileum or colon.  That's Asacol's best use.  It is a topical medication and chewing off the acrylic coating renders them ineffective in that case.  He may as well not take them.

The joint pain is systemic and unlikely to be remedied with Asacol, anyway.

If he's being a bit stubborn, he might consider sulfasalazine.  It is systemic, and it does help with joint pain.  It used to be the frontline treatment for crohns, and there might be folks here who have used it and can report back on its effectiveness in crohns.

I can't imagine what they taste like, but he can chew them all he wants.  Rather than rely on an acrylic coating, they rely on gut bacteria to become effective.  Chewing them may give him a really sour stomach -- he might try to take them with food -- but it won't render the medication ineffective.

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