Edema of legs and feet

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bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 1/12/2008 8:45 AM (GMT -7)   
Any Crohn's folks had severe trouble with swelling of the feet and legs?  I have had minor, transient trouble with this over the years which I associated with aging and heredity (my Dad had swollen legs). Recently I had marked swelling ... couldn't get shoes on.  Had a full work-up (ultrasound to rule out clots, CTs of abdomen and pelvis to rule out a mass interfering with major vein) with nothing found.  On Lasix now and showing improvement.  Thanks.

Male, in early 60's; diagnosed age 39 with Crohn's although I had intermittent symptoms in
childhood.  Had bowl resection 1989.  Treated with Prednisone and Asulfadine or Asacol, then started Remicade infusions every 8 weeks in 1999.  Clean colonoscopies for most part since then.  Currently, lung infiltrates seen in CT scans (no breathing symptoms) are being evaluated.  Remicade stopped, then restarted. On Entocort and Asacol with Tylenol w/Codene and steroid suppositories as needed.


Dixie
Regular Member


Date Joined Apr 2004
Total Posts : 407
   Posted 1/12/2008 12:22 PM (GMT -7)   
yep. been there. don't know how or why it's related to the crohns but is. only got relief after a few prednisone trips, finally stopped/helped what ever was going on. the Imuran seems to help keep it at bay that and neurotin. got so bad could not walk, pain was horrible. now wear shoes for support can't even go barefoot much. was sent to every type doc and test - but no answers till found out about the crohns (this was before I found out about the crohns) keeping you in thoughts & prayers. it's no fun......
     Dixie  
 May God Bless and keep you in his care.


bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 1/12/2008 12:27 PM (GMT -7)   
Thanks much.
Male, in early 60's; diagnosed age 39 with Crohn's although I had intermittent symptoms in
childhood.  Had bowl resection 1989.  Treated with Prednisone and Asulfadine or Asacol, then started Remicade infusions every 8 weeks in 1999.  Clean colonoscopies for most part since then.  Currently, lung infiltrates seen in CT scans (no breathing symptoms) are being evaluated.   Remicade stopped, then restarted. On Entocort and Asacol with Tylenol w/Codene and steroid suppositories as needed.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/12/2008 5:35 PM (GMT -7)   
I would bet you are having problems with the swelling because of the Entocort and steroid suppository usage. Though Entocort is supposed to be a "topical" type application to the intestinal mucosa with little systemic absorption, there are pople that do get significant systemic effects. I am one of those people. Entocort caused my BP to shoot up and my legs and feet to swell to the point I could barely walk on them. I had to take Lasix to counteract the problem. Once I got off the Entocort, the problem went away.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/13/2008 9:24 AM (GMT -7)   

Hi Bkoach2,

You said you had minor, transient trouble with this over the years, please tell me, did it start in your toes? Did you get a couple of toes on each foot ( second and third ) that would swell-up and look like light bulbs? did you have any tingling in hands or feet? That's how mine are. I haven't been able to find anything out about this paticular problem either. I wanna know more too! I'm so glad you asked this question, I don't know why I didn't think of it.  My toes are the worst they have ever been right now.  I feel for you sad !

I was just diagnosed with crohn's colitis a few days ago, I haven't had any treatment till last night so I know it isn't due to medication. I have been having some swelling in my toes off and on for almost two years now. At first I thought it was because at my job I was on my feet all day.  I haven't worked there in 6 months and right now I feel so bad I'm hardly ever on my feet.  My toes are worse than ever.  I'm positive it has something to do with the crohn's.  Thinking back, it started at the same time as all the other symptoms.  I really thought my high stress, high pressure, fast paced, multi-tasking, behind scenes statement/checking operations department banking job (are you tired yet?) was makeing me sick, so I quit!  Rest was what I thought I needed. Ha ha little did I know! 

Anyway I did my first colocort enema last night.  I was so scared I would have some problem I could hardly sleep.  I hope my toes don't get worse.  They already hurt.  I'm only 49 years old and very healthy in every other way. Up untill a couple of years ago I used to run 5 miles every day.  All these wierd symptoms I believe are related. Swelling, eczema on my hands. Tingling in fingers and toes.  The problem is what to do? 

I've always been a barefoot girl so my feet can take anything, now sometimes barefooty hurts, boo hoo sad !

                   Bye smurf debbidoo


Post Edited (debbidoo) : 1/13/2008 9:29:29 AM (GMT-7)


bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 1/13/2008 9:47 AM (GMT -7)   
My problems have involved all other parts of the legs and feet (not toes per se) especially ankles, calves, and tops of the feet. After reading the posts (thanks), I now think that whether it's steroids, or the Crohn's -- the immune system is the general explanation for swelling. Similar to joint and muscle pain. I have been on a steady max dose of entocort for a long time and know I have some of the other systemic steriod problems I recall from when I was on Prednisone. As we know, when we talk to our docs (GP's and Gastero) along these lines, not much happens of a helpful nature. Not their faults, just the realistic lack of good treatment options that don't eventually cause problems of their own.
Male, in early 60's; diagnosed age 39 with Crohn's although I had intermittent symptoms in
childhood.  Had bowl resection 1989.  Treated with Prednisone and Asulfadine or Asacol, then started Remicade infusions every 8 weeks in 1999.  Clean colonoscopies for most part since then.  Currently, lung infiltrates seen in CT scans (no breathing symptoms) are being evaluated.   Remicade stopped, then restarted. On Entocort and Asacol with Tylenol w/Codene and steroid suppositories as needed.

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