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tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 1/25/2009 1:54 AM (GMT -7)   
Has anyone just really gotten tired of the "crappy" medical care and not wanted to eat?  I am really tired.  I am down to 125 from 143 11 months ago.  I am 5'8.  And have insurance.   Grrrrr.  What do you do??  The doctors can't seen to agree to disagree!
 
Thanks!
 
Tia

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/25/2009 2:12 AM (GMT -7)   
Hi Tia, I agree with you. doctors seem not to care about our health they seem more intrested in the dollar
then there patience. I was on remicade and had to stop because it was to expensive. i am still paying off
my GI doctors ofice.

teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/25/2009 12:58 PM (GMT -7)   
Hi Tia There have been times I guess it might have crossed my mind but it doen't help I guess. What's going on with your Dr.'s that you are feeling so low about things? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/25/2009 1:04 PM (GMT -7)   
I understand tia... sometimes the routine gets soooo old that the only way I can think to circumvent it is by not putting anything in me. Unfortunately, it doesn't really help. You have to have SOME type of food or you'll get too weak and end up in the ER needing fluids and blood tranfusion and lord knows what else.

Have you thought about going with a liguid diet while you shop around for a new GI? It sounds like you need someone new managing your care. I know it is a tedious task - finding a new doc - but this disease is hard enough without us having to battle our doctors as well!

I'll be thinkin' about ya. Hope you feel better soon.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 1/26/2009 12:22 AM (GMT -7)   
I was diagnosed with "Latent TB" after taking Remicade fr 12 months.  I was getting ready to start to Humira at the time.  Remicade just wasn't working.  Now, I have to be on TB meds for 9 months and my doctor tells me that he can't do anything.  He did give me some antibiotics but I have lost a lot of weight.  Honestly, I could sleep All Day, every day, yet still not have enough sleep.  I take 100mgs of 6mp and Zoloft.  The antibiotics are finished except for latent TB.  They won't be finished until July.  Don't think that I will make until then.  5'8, 120 lbs right now....grrrrr

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/26/2009 12:40 AM (GMT -7)   
I hear ya... I'm 5'7" and 112lbs... your collar bones are probably poking out as much as mine, eh? While I'm waiting to get approval for Cimzia, my doc put me on steroids... I hate them, but they help me eat... I'm kinda of scared of disintegrating. I know steroids are evil, but maybe they're something to consider to tide you over until July?
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


teezy369
New Member


Date Joined Aug 2008
Total Posts : 17
   Posted 1/26/2009 8:40 AM (GMT -7)   
i feel you on the not wanting to eat thing. sometimes you just cant do it. ive found that for me it can sometimes be helpful to take a break from solid food for a while. its helped me a couple times in the past. another thing that was worth trying for me was a juice only diet. you still get nutrients, but also give your intestines a bit of a break.
-American expat living and working in China and loving it
-Crohn's since 2005
-Abandoned the Rx drug approach
-Taking a natural approach to maintaining my health.
-Read about my story


tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 1/27/2009 12:27 AM (GMT -7)   
Thank you everyone. I am drinking the Nutrient Drinks. I just feel like I don't matter. Once I tested for positive latent tb, the CDC here gave me meds and basically that was it. My family doctor was really angry yesterday at the fact that I have lost weight and my GI hasn't done anything. Except to tell me "In 9 months, we will start Humira". It's crazy. My daughter tested positive for TB but after her chest x-rays, she was fine. No meds, etc...How can that be?

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/27/2009 6:30 AM (GMT -7)   
What a farce...I would be angry if I were your doctor too. It's the GI's responsibility to deal with matters concerning those areas specifically and that is all they can come up with? Patients shouldn't have to pay for that kind of 'care.'
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."

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