Awaiting testing for diagnosis with story and questions

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New Member

Date Joined May 2011
Total Posts : 7
   Posted 10/30/2017 3:08 AM (GMT -6)   
As a sufferer of many mysterious ailments, its leading me to a colonoscopy next month... I've been sick 9 long years for random issues and don't know if crohns is the cause or could it be more. I was born with stomach issues that were never determined and it got worse throughout the years, I had pains like appendicitis with irregular bouts of infrequent diarrhea the pain eventually lead me to have a hysterectomy and found mild endometriosis. The pain never stopped after surgery ,and I developed excessive mucus covered stool. The episodes of pain grew longer lasting ,instead of 30 minutes to a hour every other month or more, now it lasts for days and can happen weekly. I recently had a double contrast ct, I was told I have inflammation and thickening in my sigmoid.
I have a few questions for anyone that help...
I have joint pain in my back, spine, ribs, knees, hips
I have had weird rashes on face ( like malar) no lupus antibodies*, anal area ulcers
Fatigue that will never lift (years)
Absolutely no appetite, but I have gained 30 lbs ( no meds, no explaination)
Eye inflammation not visible redness or pain, but it caused blurred vision for a few days.
Basically alot of random symptoms really wondering if inflammatory bowel disease can cause all of these things or would I need to be looking for more than one diagnosis? Because I have been sick and searching for so long I just don't have the mental energy to keep searching and searching anymore.
I have had thousands of tests for arthritis, lupus, basic bloodwork over and over..

Thanks for listening and any advice you can give would be so helpful.

Veteran Member

Date Joined Mar 2007
Total Posts : 1961
   Posted 10/30/2017 5:58 AM (GMT -6)   
Sure souns like you've been on a long rough ride trying to narrow down the causes of your symptoms.

I'm surprised that you've never had a colonoscopy or endoscopy done. These are the only tests with biopsies taken that can give you a definitive diagnosis for Crohn's disese.

Once you can get that addressed, then I would take a look at your other symptoms. Some of them could certainly be related to having IBD, but without the diagnostics that you need, you can't be certain.

Even though you've had several other tests, you could still have other things that are going on that haven't been diagnosed yet. Last year, just for example, my Daughter started having similar eye symptoms to you. It took awhile to nail down, but was diagnosed with Blepharitis. It's a life long condition that not unlike IBD goes through periods of flaring and remission. Never heard of it before that.

Hope you get things sorted out and get feeling better soon.

Elite Member

Date Joined Jan 2010
Total Posts : 10559
   Posted 10/30/2017 8:11 AM (GMT -6)   
If it is IBD, then yes, it could cause all the things you mentioned.

Re the eye inflammation. I have uveitis, which is an autoimmune eye condition related to Crohn's. But that got diagnosed because I did have obvious redness and pain. If you get the blurriness again you should go to an opthalmologist and get your eyes checked out: it's a 5-minute test to determine if there's inflammation in the eyes or not.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

New Member

Date Joined May 2011
Total Posts : 7
   Posted 11/7/2017 6:48 PM (GMT -6)   
Update: Had my 1st G.I appointment today, scheduled a colonoscopy and endoscopy for the 27th of Nov...

Question, the issue on the ct was seen on the left side (sigmoid) but my pain in on the right side is the common?

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