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Regular Member

Date Joined May 2010
Total Posts : 28
   Posted 8/6/2010 1:16 PM (GMT -7)   
Not the gastro, but the Rheumy.  Grrrrrrrrrrrrrrr!!!!
Hubby hasn't had a "traditional" flare of his CD in his guts lately, but he's been having a heck of a time with his joints!  So he's gone to see the rheumy doc three times now.....most resent was yesterday.
The background:  Hubby was Dxd with CD in early 2009 after a big flare in 2008 while he was deployed to Iraq.  Has had a couple of flares since then.  He watches his diet, doesn't drink alcohol, etc.  Was given Asacol by his doc and steroids as needed.  In May, he broke his foot and ankle in a motorcycle accident.  Since then, he's developed severe TMJ (can't eat), and has severe pain in his ankles, knees, shoulders, wrists.  It is migratory pain for the most part, some days his knees will be the worst, other days his shoulders, etc.  Two weeks ago he had gotten to the point that he couldn't move due to the pain.  I convinced him to go to the Rheumy doc that he had seen previously due to back pain (which was determined to be sacroiliitis.)  Anyway, the doc listened to us, poked at his joints a little, gave him 12 days of steroids and wanted to start him on sulfasalozine.  Hubby was able to move once the steroids kicked in, but as they stepped down he progressively got worse until he couldn't move again.  I talked him into going to see his Army doc (in a wheelchair, because he is in agony when he tries to use the crutches to walk) and he weighed him and he only weighs 115 pounds!!!!  The Army doc was MAD that no one has done anything to help hubby, and sent him off to be admitted to the hospital due to malnutrition.
At the hospital, they took the history and decided that this was just CD related arthritis, gave him a high dose steroid shot in the butt and sent him home.
Hubby actually felt 110% better the next day, thankfully!!!
We were told to follow up with the Rheumy the next day, which we did. 
The doctor basically told us that he wasn't going to run any tests, because they were pointless and wouldn't tell him anything.  He said that he wasn't going to try hubby on a more aggressive medication because he wasn't bad enough.  He wasn't going to give him a month's worth of pred because it's too risky.  So he basically told my hubby that he needed to suck it up.  (My husband is NOT the type to whine about just anything....he's a pretty tough guy.)

I comlpletely understand and respect the fact that autoimmune disorders are difficult to diagnose and treat, but I felt like he could have been at least a little bit more understanding!  He literally asked me at one point if I thought he was lying to us when I tried to ask a question.  I almost started crying right then and there in the office.  My husband was an active 33 year old who always maxed his PT tests and played ultimate frisbee and soccer with the kids.  He is now reduced to being pushed around in a wheelchair because of the intense amount of pain in his joints????  (Yes, he does have a broken foot, but surprisingly through all of this, the bone doctor said it's healing really well.)

I am just VERY frustrated with the whole thing.  This doctor was basically very condecending in dealing with us yesterday.  Hubby has seen him 3 times now and he has yet to order a single blood test on him.  We want to get a second opinion, but he was very adiment that if we go get a second opinion, they will tell us the same thing.  It's incredibly depressing.  It kills me to see him like this.  Although he is still doing pretty well today.....I'm very worried about when that shot wears off.

If anyone actually read all this, you deserve a cookie!  Haha!





Veteran Member

Date Joined Mar 2007
Total Posts : 1633
   Posted 8/6/2010 2:32 PM (GMT -7)   
Having dealt with a couple of horrible doctors myself, I learned this lesson the hard way:

Find another doctor.

It's that simple. I kept going back to a horrible doctor and expecting better results. That's silly. Find another doctor. The rheumy's statement about a 2nd opinion is BS. Call him on it. Find another doctor. If that one is just like the 1st, then find yet another doctor.

And while you're at it, a second opinion from another GI might help too. Asacol isn't going to do much if anything for Crohn's related arthritis, but a better Crohn's med might help the arthritis more.

Veteran Member

Date Joined Jan 2007
Total Posts : 656
   Posted 8/6/2010 3:01 PM (GMT -7)   
What a horrible time you guys are having! Beave is right--100% right. There's no excuse for any doctor treating someone with that condescension, insensitivity, and wrongheadedness. I went through the same thing with my original gastro doctor, who basically told me that my symptoms were all in my head--even to the extent of asking me about the stressors in my life, and when I told him that my marriage was the least stressful thing in my life, he told me that he thought I was lying. I gave up and stopped looking for a diagnosis--until I had to have emergency surgery for a resection of the terminal ileum.

Find another doctor--NOW. Talk to friends and neighbors, ask any doctor you respect for a referral to a better rheumatologist, get on the internet and look for reviews of local rheumies. But find someone else. Nobody--especially not a veteran in such terrible, debilitating pain--deserves to be treated like this!

Regular Member

Date Joined May 2010
Total Posts : 28
   Posted 8/6/2010 4:39 PM (GMT -7)   
You guys are just feels good to hear it! I was SO depressed yesterday after the visit, I cried all the way home. The doctor was VERY convincing that he was right and there isn't anything anyone can do until hubby gets worse. (Worse? The man was in a wheelchair! I think this doc would wait until his joints explode....)

Hubby is in a great mood because he's feeling better, so he's kinda on the fence about a new doc. But I have seen him get better just to go downhill again before, so I'm less optimistic. (Usually he's the sourpuss and I'm the happy-go-lucky one!)

Next week I will get in touch with the insurance company to find a new doctor for him. We are basically new at this refferral thing.....since hubby is active duty it's different than if me or the kids needed something. But we might as well do our best to get him fixed now while he's still in. We are 99% convinced they will be kicking him out sometime in the future, but at this point I"m more concerned about his health!
THANK YOU for the encouragement!  smilewinkgrin

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 8/6/2010 6:59 PM (GMT -7)   
You hired this doc, you can fire him. You need a doc you are comfortable with and can communicate with. Even if your doc is right, a second opinion is always a good idea.

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 8/7/2010 5:30 AM (GMT -7)   
Yep, I hope and pray you are able to convince your husband to dump this sheister!! I get so frustrated w/our government that calls upon our military to give its all - and then the thanks and appreciation our Vets actually get from them. It sucks. BIG time. They haven't really appreciated and cared for our Vets well since WW II. It sickens me all those old farts who haven't ever served in the military blythely send our military off to be killed, maimed, and damaged w/o a bit of conscience. THANK YOU to your husband for his service.
My computer says I need to upgrade my brain to be compatible with its new software.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/7/2010 7:47 AM (GMT -7)   
I agree 100% get another opinion. You sound like you saw a very egostistical jerk, who was telling you not to get another opinion because he was "god" or something and knew it all.

It could be Crohns related arthritis it could also be Fibromyalgia. Many of us Crohnies suffer with Fibro along with our Crohns including me. The symptoms are migratory like you described. I also had a old Rheumy tell me once, that joint pain is often a precuror to a Crohns flare. So here's hoping in hubby's case he isn't starting to flare again. There are so many joint issues with Crohns I still think you are better off seeing another Rheumy as mentioned above there are other Crohns meds that will take care of the Crohns, but also the joint issues at the same time. Methotrexate is one that comes to mind. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 8/7/2010 4:38 PM (GMT -7)   
       Ask his Army doc to refer him to another Rheumatologist, ASAP.
   No excuse for this, I've never come across a non-compassionate Rheumy!

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 8/7/2010 5:57 PM (GMT -7)   
I would also say please think about going a civilian doctor, and do not stop until you find one who will help you. I personally would suggest avioding a med board.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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