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KGRIFF
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/3/2009 5:25 PM (GMT -7)   
 
 I was just dx's in Aug 09 with crohns. I thought i was having VERY bad cramps, went to
ob-gyn on friday he said urtist was enlarged, by sunday night i was in the hospital CT scan
said i had infection in my intestins. The drs tried to treat me with antibitocs but by forth day said it was not getting any better. I had surgery, they took 20inches of small and 10inches of my large intestines out. 12 days in the hospital and i feel worse then when i went in.  Before this i did not have any problems in that area, boy I do now. I was on Enbrel for Ankylosing Spondylitis. Now I just took my first dose of Remicade. What is remission ? How do I know if it is happening again? What can I eat ?  Very depressed !!
 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/3/2009 5:57 PM (GMT -7)   
Sorry to hear you have been sick. It can take quite a while for remission. In the meantime,  most advise a low residue diet (low in fiber) with things like chicken noodle soup, crackers, dry toast, jello. Milk products often make things worse for most crohn's folks. Drink lots of water. You just had surgery, so you are going to need time to recover. If you are having problems, you can always call your doctor and ask for suggestions for post surgery diet. If you are in remission, you should be out of pain and not going to the bathroom so much. Good luck to you.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


KGRIFF
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/3/2009 6:23 PM (GMT -7)   
Dr not much help. He said " just eat normaly but no spicy foods". Getting back to work has been the hardest. I guess i am not close to a remission, lots of pain and going all the time. Im 40ish and never had any problems in that department. Thank you

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/3/2009 6:55 PM (GMT -7)   
Hmm, I think you need a new doctor, if he's not really caring about your quality of life. Did you get a pathology report from the intestines they removed? Can they say conclusively that it is Crohn's? I've read that Ankylosing Spondylitis an also affect other organs, so be sure to discuss your pathology report with your doc. Also, while you were in the hospital, when they thought it was an infection, did they do any stool tests to figure out what you were infected with?

Also, I think they removed quite a bit of intestines. It not only takes a while to heal, it also takes a while for your intestines to learn to function again given that part of it was removed. It will take a while for it to figure to have normal stools again. Also, I've heard that when you remove the terminal ileum (and it sounds like this is the case with you), you can have diarrhea, I think because you lose the ability to absorb bile acids. I think doctors generally prescribe a cholesterol medication called Colestipol (or questran) to bind the bile acids and thicken up the stool. In addition, you need to probably start slow on food - I'd recommend a liquid diet for a while, and when you're able to tolerate that, go on to a low residue soft diet that is easy to digest - like white rice with chicken, jello, crackers, chicken noodle soup, white bread etc. And you need to learn what your body can tolerate - so start keeping a log of what you ate, and how you feel, the quality of your stool etc.

Also, another thing I've heard is that if you don't have the terminal ileum, you lose the ability to absorb B-12, which is very essential to the body. So, they will probably tell you to get B-12 injections on a regular interval.

Remember your body has been through major surgery, your recovery is going to take a while. Remember to keep yourself hydrated, and take it slow on the foods. If you are losing too much weight, they can feed you with peripheral parental nutrition until you are able to take in enough calories by mouth. Also, talk to your doc about the biopsy results, and also about Colestipol and B-12 injections. Also, probiotics (good bacteria) can probably help with the diarrhea - but initially they may give you gas. My husband takes VSL#3, but there are others on the boards who take Culterelle, Align, etc.

Hope you start feeling better really soon.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

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