Crohn's Disease Forum » Treatment » It's systemic... does your doctor "get it"?


12-10-2010, 11:37 PM   #1
susanfrances
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It's systemic... does your doctor "get it"?

I am having a hard time finding a doctor for both myself and my daughter than really understands that CD is a systemic disease with extraintestinal symptoms. She has strep today (got sick 12 hours after my cimzia loading dose ). Her joints hurt, she can barely get out of bed, her fever is 103, and she is sooo much sicker than a kid with a good immune system that gets strep.
If I have a bad rash with a flare, my GI sends me to the dermatologist; episcelritis to the opthamologist, UTI that won't go away b/c of my meds to the general practioner, joint pain... you guessed it... orthopedist. Enough co-pays! Does anyone see an immunologist or have any suggestions?
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Diagnosed in 2007/ Crohn's (ileocolitis) Fistulatomy with seton placement 2007, 2008
6MP 2007
Pentasa/Entocort: no luck
Humira: allergic
Cimzia: started 12/10..fingers crossed

Also, sweet, precious 9 year old daughter with hx of weight loss, diarreah, abdominal pain and cramping, CD- terminal ileum- 11/10- trying every possible homeopathic route first
12-10-2010, 11:56 PM   #2
Nica
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So far, my Rhumetologist seems the best at covering the bases. He gives LOTS of Biologics out in his practice and deals with all the side effects.
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Med list!
Humira, Percoset, Phenegren, Ambien,Zoloft (trying cymbalta after the new year)
Old Med List!
Pred, Asacol, Remicade, Methotrexate,immuran, Pentasa,Entocort, lomotil, more antibiotics than I can count, gut muscle relaxers, tramadol!
Would love to have Crohnies meet me on
Facebook! please put CF or Crohnie so I know who you are in requests! http://www.facebook.com/profile.php?id=686580310
12-11-2010, 10:48 AM   #3
susanfrances
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Thanks for the tip! I would not have thought of going that route- but it makes perfect sense. The cold weather here this week- with lots more on the way has made everythiing hurt a little more than usual.
Hope you are feeling better soon!
12-11-2010, 11:18 AM   #4
Lisa
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My GP doctor is also a rheumy Dr.....so I have both bases covered!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-11-2010, 08:46 PM   #5
JoeUK
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Does anyone else get joint pains?
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Crohns diagnosis 2000-Boo!
4 peri-anal fistulas & matching seatons & ops
Meds: used to be on 3g Pentasa-now 3g Sulfasalazine. 100mg Azathioprine, had bits of prednisodone, loads of flagyl & Cipro
Dairy allergy
New-massive problem with crohns related reactive arthiritis only etoricoxib helps. Anyone else with this?
Now on Infliximab currently
12-11-2010, 09:04 PM   #6
STLGirl
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Does anyone else get joint pains?
Yes Joe, totally! Lower back, knee, feet-toes, shoulder!
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~Sara

Diagnosed with CD: November 1, 2010
Been on:

Flagyl
Prednisone
Imuran - Allergic
Currently on:
Remicade (Started 4-4-11)
Vitamin D3
B Complex w/ Vitamin C
Calcium
Omega3 and Krill Oil


"A merry heart does good like medicine" Proverbs 17:22
12-12-2010, 01:30 AM   #7
BLM
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Hey Joe, your tellin me my story.....so many problems, especially infections. And the COPAYS....can I get a break?? Its become incredibly expensive for my family this year with all our ER copays, dr copays, xray copays, perscription copays....and the list goes on....and I keep having more and more problems....ICK!! Your not alone.
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Bev~
Diagnosed Crohns Disease March 2010, suffering for 15 years


Prednisone
Remicade
B-12 injections 2xmonth
Daily vitamin
60 mg Lansoprazle
Celexa

As Needed:
.25 Xanax
Percocete
Hysocycomine
Phenergan
Zofran
12-12-2010, 02:37 AM   #8
Entchen
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Joint pain...yes to that. Right now am limping lots, especially after sitting for even short periods of time. Am ensuring I exercise to be less stiff, although it sure does not help the pain.

Even my fingers are stiff and painful right now.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
12-12-2010, 10:25 AM   #9
StarGirrrrl
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Well my GI spent our whole last consult (revisist) saying IBS, IBS, i'm 90% sure it's IBS When I have been sent back after a Rheumy ordered a WBC scan which found inflammation in my bowels, and for the past four years my bloods always found raised CRP, and I won't start on the symptoms that didn't fit then, or the new problems I have developed now

So another vote for Rheumatology, god know what state (and i'm bad enough now) I would be in if that test wasn't ordered. Rheumy was the first Dr who went through my whole medical history from birth, all my bloods, questioned Mum etc. So so glad he ordered that scan. Was sent there after developing joint pain.

Who knows how seriously I will be taken when CD (because I am convinced it is) is confirmed, because they sure as hell are not listening now. Been counting on a diagnosis and treatment to get my life back but had to fight so hard to get to where I am now with Gastro, even with confirmed IBD, that I have doubts.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
12-12-2010, 11:48 AM   #10
Rebecca85
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I think my docs 'get it'. I went the other day with a coldy virusy thing and the first question was 'how are your bowels?'
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Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
12-13-2010, 06:02 PM   #11
outlier
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I am all about the eye inflammation, it was my first symptom. So my docs get it, they have to.

My GI doc is one of my fav docs because he saw the eye inflammation and heartburn and actually was able to think outside the box.

Try a rheumatologist or ask your current eye doc if he knows some one who specialized in inflammatory eye (for a second option, most will help). then work backwards. ask the inflammatory eye guy who'd he recommends as your number 1 doc.

Even though all my docs (GI, GP, eye, Rhemy) know they are working with the same illness, i still end up with to many co-pays cause each part of me needs a lots of check ups.
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
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