New Girl on the IBD Block

[poppysunflower]

Hi Everyone!

I'm new here and new with a very recent dx of Acute Moderate Diverticulitis & Colitis. I've always had IBS, diverticulosis but, never any issues with the above mentioned issues until now. I'm 43 and was recently in the ER twice in the same week. Here is my confusion....I'm scheduled to have yet another colonoscopy this Thurs. Ugh the death prep!! I'm guessing to FU with the above listed two items.
Here are my "issues" and would love to get feedback from others that may have started out like this?

Hx of polyps (High Risk)
Elevated IBD panel from blood work (which pointed towards Crohn's)
Elevated well off the charts really for gluten/Celiac intolerance....bx are neg. but, will be tested again this Thurs. for true Celiac Sprue
All over "very painful" joint pain....mainly in knees, low back & fingers.
Capsule study no Crohn's noted in small intestines....or in large intestines as of yet.....but, I'm curious now since I have "Colitis" is this how Crohn's can start??

So confused, scared, worried about every little pain now. Would love to hear feedback.
Thank you!!!

 

[valleysangel92]

Hello, welcome to the forum!

Joint pain can be a symptom of crohns disease, and I think polyps can as well, so there is cause to get it looked into. Do you have any other symptoms?

Colitis means inflammation of the colon, so it can be a symptom as well as a diagnosis. Some doctors will call Ulcerative colitis just 'colitis ' so ask your doctor to clarify if you aren't sure what they meant.

As for coeliac, I can relate there. I had my bloods come back at 200+ (they stopped counting at 200) on multiple occasions, but my biopsies were totally negative, they didn't re-biopsy me because I was only 14 .. But they carried on checking bloods and they always came back off the charts, so we ended up going with those. I'm curios though.. Were the biopsies taken during a colonoscopy or an endoscopy? Coeliac usually attacks the small intestines, which a colonoscopy wouldn't be able to get all the way through, so an endoscopy may be needed. In my case, we saw a dramatic improvement in my blood levels within a few weeks of going gluten free, and that was enough proof for us.

 

[Jessi]

Hello and welcome, poppysunflower.

I'm so sorry about the pain you are in and your recent diagnosis.

I have ulcerative colitis and am dealing with excruciating joint pain pretty frequently. So it could be that your joint pain is merely a part of your colitis. However, every case is different. I don't think that one disease (colitis) is a precursor to a second disease (Crohn's), but I definitely understand your fear. :hug: There is so much going on in your body right now, that you can't help that there will be so much going on in your head. We all get that way. After some time of living with the disease, you will come to understand your body better.

I pray that you can find some peace of mind and some physical comfort very soon.

 

[poppysunflower]

Thanks for the replies!
For the Celiac Sprue dx they did an EGD to take bx however, the bx were negative but, the blood work was very high for gluten intolerance. I had a capsule study to look at the small intestines and they were negative as well. They are repeating the EGD Thurs. to take additional bx to see if there is damage. I'm also very B12 deficient and was taking the injections I may have to start these back up as the joint pain right now is really bad with no relief....I have it everyday. I also saw an Rhuemy she tested me for Lupus & RA and nothing has returned so we are now focusing back on the gluten and now the diverticulitis & the Colitis. I'm guessing Thurs. I will know more about the colitis. My blood work for my IBD panel did come back high.....and I haven't been tested for that since.
My question now is since my IBD blood work came back elevated is that elevated due to gluten or is it geared more towards colitis or crohn's? I didn't have colitis at the time I was tested. Thoughts?

 

[ronroush7]

Don't have any answers but sending support and welcome.

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