Confused and frustrated

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New Member

Date Joined Sep 2013
Total Posts : 3
   Posted 9/24/2013 4:05 PM (GMT -7)   
I will try to not make this too long! :-)
I am really frustrated and confused and hoping someone might be able to offer some advice or suggestions. I have has digestive issues my whole life but about a year ago I got really sick with diarrhea, cramps and spasms (which i feel in my lower abdomen and lower back) pain after I eat (feels like it is painful for food to go through). I also have blood and mucus in my stool and have had a few impactions and bad fatigue, horrible pain when gas bubbles get stuck (amongst other symptoms). Originally the specialist thought ibs since colonoscopy just showed nonspecific inflammation. Then I started losing weight (30 pounds), had very low vitamin b12, got sores on my leg etc and they tried me on entocort. It worked and most of my symptoms disappeared. I came off entocort and was so sick within two weeks I was back in the hospital. Put me back on entocort immediately and I have to take morphine for the pain. My problem is that all my tests always come back borderline?!? What does that even mean? They did a specific blood test for crohns and it came back not negative but not positive? Same with ct scan and pill camera just showed inflammation? However doctors are stumped that entocort worked and have most symptoms of crohns and tests are borderline but nothing concrete. So frustrated as I just want a diagnosis and unsure of what it can be if not crohns! Thanks for reading my little vent! :-)

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 9/24/2013 5:34 PM (GMT -7)   
I'm sorry. Inflammation is a diagnosis. I don't understand what your doctors' problem is. You don't need a specific diagnosis to pursue treatment. Get a new GI!
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

New Member

Date Joined Sep 2013
Total Posts : 1
   Posted 9/27/2013 5:46 AM (GMT -7)   
I am so sorry you are having such issues. Well, it certainly sounds, looks, and smells like Crohn's....hmmm...
I think I would definitely seek out a Crohn's specialist...not sure where you live, but a lot of University Hospitals have dedicated Crohn's/ Coilitis clinics...

But please don't just suffer in silence. If it is Crohn's the damage being done to your body is just not worth it....get another Doc!

Hope you feel better soon.

Also, check our, ccfa website, and there are many new bloggers out there with Crohn' of my favorite is Sarah at inflamed and untamed.... great group of people.

Best of luck!
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