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lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 9/11/2008 11:31 AM (GMT -7)   
After spending the night in the ER, we didn't accomplish much.  On a good note Sierra does not have a blockage.  She has a slight infection in her intestines.  As far as the pains, they are blaming them on the stricture.  They immediately hooked her up with fluids since she was dehydrated.  They gave her antibiotics, morphine and a dose of steroids.  So again steroids are her bandaid.  Don't get me wrong they work while she's on them but as soon as she's off she goes right back into a flare.  She says they make her miserable though.  The Dr. said pains, naseau and vomiting are just part of crohn's. 
Apparently in order for surgery to be an emergency, the intestines must rupture.  They gave us some financial resources to look into for surgery.  Unfortunately, I am not getting my hopes up.  So far everytime we apply, we get turned down.  We make too much too qualify.  Sorry for a little venting and getting off track....
 
I know many of you live with strictures.  How do you manage the pain, etc?  Maybe she doesn't have a high pain tolerance?  Do you live on a liquid diet forever?  Is this what she is going to feel like everyday for the rest of her life?  I know everyone is different and trial & error brings answers but we are at our witts end - I'm feeling really helpless.  Thank you all for your help!  I pray for all of you and a cure for Crohn's!
 
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2008 11:41 AM (GMT -7)   
Lil-momma I live on a low residue diet all the time. One thing I found that helped my stricture was this diet. I do not eat any kind of red meat. It is hard even for the normal digestive tract to digest. I stick with fish, chicken and turkey. Keep all veggies well cooked and mushy. Soft white foods.

As far as surgery being an emergency the intestines must rupture is BS. I had to have my 1st resection as an emergency and it was because I was completely blocked not ruptured.

I think maybe they need to try some of the stronger meds on her, but without insurance, these meds are going to be extremely expensive. As a minor she doesn't qualify for any type of state aide?

So sorry she is suffering so, I don't think she has a low pain tolerance, this disease can hurt like hell sometimes.

Hugs to you both,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/11/2008 1:06 PM (GMT -7)   

My heart just goes out to you both.  I know the pain she is in, I lived with strictures several times while waiting for surgeries to be scheduled.  Nanners is right about keeping foods very soft, but if even that is too much she can go to "full" liquids.  Basically custards and puddings, milkshakes and so forth.  Creamed or pureed soup.  You really can get a lot of nutrition into yourself with liquids, try adding a jar of baby turkey, chicken or beef to soup, it bumps up the protien.

As far as the insurance, have you spoken to the school nurse? It seems to me there should be some form of insurance for minors available.  Also, most of the major drugs available have some assistance programs.  What about going to a major hospital for some trials?  Or the CCFA. Just throwing things out there, but you've probably already run them all down already.


Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/11/2008 1:35 PM (GMT -7)   
Hi Good to hear she does not have a blockage and hope they get the infection cleared up. I too am on low residue but I do eat hamburg and other minced meats. Gee I sure hope you can get some help on the medical end of things and yes she will probably need some other med at some time . Hope she gets to feeling better soon. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2008 1:43 PM (GMT -7)   
I think if you look in the Crohns information (top of all posts) there are links to assistance programs for drugs such as Remicade, Humira etc. Just a thought.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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