Just a general question for other CD sufferers.

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nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 11/29/2008 10:44 PM (GMT -7)   
Do the rest of you find that whatever it is that is ailing you is automatically assumed by your doctor to be Crohn's related? Do you ever feel that maybe they are not noticing other symptoms that may NOT in fact be CD-related? Does this happen to most of you? I'm just really curious about this. confused

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/29/2008 10:59 PM (GMT -7)   
Yes. Absolutely. Sometimes I feel that my leg could drop off and they'd still say it's Crohn's related!

I haven't found a solution for it, other than to keep pressing and pressing for attention. Sooner or later *someone* ends up listening.... eventually...

What symptoms are you trying to get them to investigate?

Ivy.
Co-Moderator Crohn's Forum.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 11/29/2008 11:03 PM (GMT -7)   
yup-- and i've had some really weird symptoms over the years...but i have learned that crohn's can manifest itself almost anywhere in your body- eyes, lungd, liver etc...

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 11/30/2008 3:42 AM (GMT -7)   
nope.. not really. they always investigate things thouroughly , without jumping to that conclusion.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/30/2008 3:54 AM (GMT -7)   
Actually, it is the opposite for me. I am always blaming everything on the Crohn's, lol! :-)


Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/30/2008 4:16 AM (GMT -7)   
Hi I feel sometimes that by the time I have discussed my CD related things that there are other things that are overlooked. It does leave me feeling that I am not getting the best of care because of it at times. Very good question as sometimes it can lead to a bit of anxiety. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/30/2008 7:31 AM (GMT -7)   
Yes - my husband and I joke that everything is crohns related, including my car troubles lol.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 11/30/2008 8:59 AM (GMT -7)   
  Fitz, you've got me thinking again as usual. My car is sitting in the drive, I am afraid to drive it because I have not tended to do maintainance as promptly as in the past.Mostly Crohn's related? most definitely!   
   Seriously though, several visits to the ER have proven to be quite rough. Sinus infections and such that I know are going to throw me into a flare are treated well enough, but they take a hands off approch to the Crohn's factor. Then, by the time I get in to GI doc, the flare subsides, or becomes a big deal. I am seeing a new Doctor, who hopefully will prescribe some Asacol, in case I have this issue again this winter. I have done enough research on my own to understand that it is near impossible to seporate other symptoms and illnesses from the Crohn's, we are all so different. Crohn's frustration, I have this symptom even when all others subside!



              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

Post Edited (Margie11) : 12/4/2008 8:21:29 PM (GMT-7)


nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 11/30/2008 6:45 PM (GMT -7)   
ivy6 said...
Yes. Absolutely. Sometimes I feel that my leg could drop off and they'd still say it's Crohn's related!

I haven't found a solution for it, other than to keep pressing and pressing for attention. Sooner or later *someone* ends up listening.... eventually...

What symptoms are you trying to get them to investigate?

Ivy.

Thanks for the input; actually I wasn't aware that I was having any strange symptoms until my doctor noticed some irregularities on a couple of CT-scans I've had this past month. He's suddenly noticed some things which don't appear to be connected with Crohn's, lung problems and now something odd with my thyroid, and he seems sort of confused. More testing is in the works, and I'm just really nervous at this point.  I'm no spring chicken, but it seems like everything is conking out on me at once. Just one weird thing after another apparently. p.s. yeah, the brakes on my care are acting up and I think I'll blame that all on Crohn's, too.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 11/30/2008 6:49 PM (GMT -7)   
I also have another disorder which I blame some symptoms on, but my doctor blames those same symptoms on the CD.

I still have a GI that thinks it's NOT CD, so she disagrees completely! LOL!
Live for today, for tomorrow you might just get hit by a semi.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/30/2008 6:52 PM (GMT -7)   
I have more problems with them thinking that it's NOT Crohn's related e.g. HORRIBLE headaches, joint pains, tenderness in the subcutaneous area and so on.
I guess being a little bit more aggressive when it comes to asking questions and requesting a diagnosis might be necessary..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 12/1/2008 4:47 AM (GMT -7)   
Been away for a few days and am now playing catch up!

It sure seems like everything is related to CD. Especially my horrible immune system. I keep getting everything these folks at work bring in since I am on their computers.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 12/1/2008 7:25 AM (GMT -7)   

not trying to dance on the head of a pin here.....but we should maybe define "related" a little better.

It seems to me that on a larger scale almost all of the issues i have had are related in one way or another to my Crohns...so I can understand it if my Dr. makes that connection.

for example....I was having some joint pain and my left foot was dragging when I walked....problem: extremely low levels of Vit B.    reason for the low B...malabsorption due the crohns.  So is it related?

My arthritis.....

hair falling out....probably the drugs....drugs used to control the crohns

dry skin......possibly the drugs again

loss of feeling in the toes and some finger tips.....again they are thinking it may be a nutrition issue

anemia......when it occurs.....usually associated with bleeding from the crohns...then the anemia brings about a host of other smaller but serious issues....are the smaller issues crohns related?

Pains in my feet.....my nails getting thinner......rashes here and there.....

if i swell up from the steroids....is that crohns related?

it all seems to be like one of those big domino designs....push the first one down and watch where the trail leads.....

 

 

 


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 12/1/2008 8:56 AM (GMT -7)   
I think it is a chicken or the egg relationship.
              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11


nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 12/4/2008 9:15 AM (GMT -7)   
I've reached the conclusion that I need to stay away from my doctor for awhile. I feel better when I do.

malb
Regular Member


Date Joined Oct 2008
Total Posts : 33
   Posted 12/4/2008 8:22 PM (GMT -7)   

nruth

I love your post!!! And couldn't agree more, the more I go to the hospital and the doctor the sicker I discover I am! Seriously though, what I have discovered after 15 years of living with this disease is that I am smarter than my GP, at least when it comes to Crohn's, but because he has the degree, I need him to prescribe the meds I tell him to and order the tests I tell him to. His job is to learn everything he can about Crohn's and the related diseases I have and tell me everything he's learned. This arrangement is working well for us now. :)

Good Luck

Michael

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