Newbie to Crohns

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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/14/2008 5:28 PM (GMT -7)   
Hey Cronies!

I've posted for years at the Lupus forum . . . but I learned today that I "most" likely have crohns. The GI doc did a c-scope a couple weeks ago for episodes of GI issues with extreme pain. She said I have "tons of diverticulosis" which accounts for the left sided pain and a lot of inflammation in the ileum. She took several biopsies which favor crohns.

I guess I thought that a biopsy would be conclusive one way or the other. She has asked me to get a blood test called "IBD 7 (SQIBD7)".

I have a rx for Budesonide SR (I think that is Endocort). But I am to wait for the results of the blood work to get the rx filled.

I'm hoping to get some good info here at the Crohn's forum and welcome any comments, advice, links, etc.


Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Mark Mac
Regular Member


Date Joined Mar 2008
Total Posts : 41
   Posted 4/14/2008 5:50 PM (GMT -7)   
Sounds like they're in the same place they were 15 years ago when I was diagnosed. Too many people seem to fall into this category of "we don't know, so you have Crohn's". I feel for you. I think the best thing to do at this point is maintain a great relationship with your western doc, while learning as much as you can from nutritionists (I am on a strict dairy free exclusion diet), acupuncture I have found to be helpful, and maybe some massage (I recently heard of this Arvigo massage that works to realign the abdominal organs), and any other alternative therapies that people on these forums are talking about. Still respect the western doctorines, but there are so many things that you can learn if you check into some things on your own. Good luck, and know that all the folks on this forum are a wealth of information.

Best regards,

Mark
28, male, diagnosed CD in 93'. Currently taking Humira, and darvoset for pain. Also getting acupuncture and chinese herbs as well as a massage when I can afford it. 107 lb

"I'm not a doctor, but I play one on TV"


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/14/2008 6:12 PM (GMT -7)   
Or the " You were misdiagnosed, maybe you have UC with IBS or anything similar". I've gotten this one before. Personally, I just say to the medicals I have IBD, some contoroversy over its exact nature, but I DO have IBD for certain.
You will find GI DX's are more opinion than science. At least in my experience.

Matthew

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/14/2008 8:03 PM (GMT -7)   
I am writing this with a BIG tongue in cheek - but we mods have to stop getting other forum's diseases!

I am so sorry that you are having all these gut problems on top of your already complicated medical history! Evidently your biopsies were like mine - "highly suggestive of Crohn's disease." Biopsies that "favor" CD are ones usually without granulomas. Granulomas in the intestinal mucosa are conclusive for CD. Only about 55% of people with CD have biopsies with granulomatomous tissue. That's why researchers have worked on developing blood testing to help in diagnosing the disease. The IBD Serology 7 test was developed by Prometheus Labs. I would caution you check your health insurance regarding this test. Some of the larger insurers [ie. Aetna] do not pay for this test as they consider it "experimental." My GI uses the Prometheus tests when there is not conclusive biopsy evidence of CD.

Regarding links: There is of course our Healing Well CD Resource Center. Also the Crohn's and Colitis Association of America [CCFA] has good information on everything form effects on life-style to medications to educational brochures for family and friends.

Please let us know what your IBD Serology 7 says. I hope that the Entocort [(budenoside] brings you some relief!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 4/15/2008 9:59 AM (GMT -7)   
I'm new to all of this but it took doctors all most 2years to diagnose me. it took 3 colonoscopy, EGD, camera pill, stool test, and blood work. told in 2006 i had CD , then doctor changed his mind. removed gallblader,2006 going still 15 to 20 a day. after some time was told I had IBS had to learn to live with it. Was in hospital 1 dhydration, 2 thought it was my heart,(its ok). Been told I'm cazy. Its affecting my adreinal gland doctor tells me not to worry. Have pain right upper side goes to my back GI doc tells me to see regular doc, regular doc tells me to see GI doc. June 2007 last colonoscopy told I had CD for sure its in low part small intestine & connecting large intestines I was put on asacol x3, entocort x3, lotrel for high bp, omeprazole, potasium,lomotil for lose stools,tramadol for pain and started humira in Feb.On vitamens, and now calcim. I've been reading here for a few days and I now know I'm not crazy so glad I found this sight. Ne Ne

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/15/2008 1:29 PM (GMT -7)   
LOL Ides!! I see you have a real list yourself. I went today to see the eye doc and he added sjogrens and dry eyes to my list! I stopped for a big, chocolate covered, creme filled donut on the way home!! Thanks for the heads up on the IBD7 . . . *sigh* if we aren't dealing with symptoms, its insurance issues. . . AKKKKK!!

Mark . . . I do keep my eyes open for natural alternatives. I've been helped greatly with pain and fatigue by limiting sugar and simple carbs from my diet (with NO artificial sweetners). It really is amazing how well the body does when we feed it right. Thanks for the suggestions . . . I'll keep them in mind.

Matthew . . .I think all the auto-immune stuff gives the docs a real hard time. It truly is a difficult puzzle to piece. Sorry you've been shuffled around like that. Thanks for th encouragement and yes, IBD does work!!

Ne Ne . . . so sorry you've had such a hard time getting dx. I hope your meds are controlling your issues by now. If not, you've found a great place for advice and enouragement. You should start a new topic, all about you, so the others can say hello. Your post will get lost here and people won't get a chance to say hello.

Thanks again everyone for your encouragement.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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