Major Swelling and Roaming Pain

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New Member

Date Joined Feb 2009
Total Posts : 7
   Posted 4/2/2009 8:44 PM (GMT -7)   
Hi all,
I am recently diagnosed with Crohn's (although they are hesitant to give a definitive diagnosis - even after colonoscopy, upper endoscopy, and capsule endoscopy all pointing to it, because of my initial improvment on only Nexium). Anyway, I am now on Pentasa only, and my GI problems have really subsided. Yay. However, since January, I have had swelling, and a kind of roaming pain. The swelling was primarily in my left foot/ankle and really bad. The pain would move every couple days/weeks - back, knee, then really bad shoulder, neck, etc. The swelling in my left foot is STILL there. I have seen a GP 3 times for it - took xrays, did an ultrasound to make sure it wasn't a clot, and finally referred me to an ortho. Swelling went down a bit when I saw the ortho who took more xrays, examined, couldn't find anything majorly wrong, told me to come back in 6 weeks if it's still swollen. Went to my GI, told him about the pain and the swollen ankle and felt like it was really blown off. He said if it was definitely not related to the medication, and if it was Crohn's, it would be in both feet/ankles. So, it's been months, zero answers, and I'm still swollen. As of last week, my right ankle began to swell a little, and the weirdest thing of all, a couple days ago, my NOSE became swollen (and hurts!). Am I crazy to think all of this is related to the Crohn's? I haven't been working out hard enough to injure myself, I didn't get punched in the nose recently, and all of this began around the time of my tentative diagnosis (3 months after symptoms began). I'm just frustrated because the doctors keep blowing it off and I'm not sure what I need to do. It's not normal to be swollen - and I'm sick of the pain. I haven't had one day of feeling 'normal' since October (I'm sure you all know the feeling, some for many years). I'm just tired of them not taking it seriously. Is this something that anyone has experienced??? The nose thing is really weirding me out, and the rest is just annoying. What advice do you all have, and do you think this IS Crohn's-related?  Thanks!

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 4/3/2009 5:15 AM (GMT -7)   
The nose swelling does have me alittle baffled too but I know all about the other areas. My Crohn's related arthritis started it in my left ankle, then my right knee, then somewhere else until after 6 years it had affected every major joint in my body. I even got it in my finger knuckle and my toes. it can be in one joint or many at one time and I understand the pain. It's terrible. I eventually had to go on Social Security Disability because I couldn't get my own socks and shoes on some days. I also got it in my back. I havent been able to turn my head for 3 years because my neck is frozen. It doesn't seem to damage the joints though. When the swelling goes down, the joint seems to be normal. I started Remicade last August after a flare and it has changed my life as far as the arthritis goes. I went from where I couldn't walk to my mailbox most days to walking 3 miles a day and working out in the gym again. It's really been an amazing change. I lived on Alieve everyday and it helped alot but since I started Remicade I rarely need that anymore although the Remicade is starting to wear off earlier and earlier each time I get it and that has me concerned. I wish you the best, Tony
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, Flagyl, B-12 injections and iron. Feeling much better!
God Bless. Tony

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