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Crohn's Disease
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Posted 7/4/2012 2:40 AM (GMT 0)
Hi everyone,

I've been off the forum since January, but I love to come back on and see how everyone's doing. I've told several people about this forum and how helpful it is. Thank you for being here.

Unfortunately, I'm back in the "active" CD phase again with lots going on. Some of it has seemed unrelated, but now perhaps it's all coming together in a flare or new active disease pattern. Waiting for a call back from GI, frustratingly didn't come before the holiday -- I need your thoughts!

I had a troublesome (but ultimately benign) breast lump and had to have a lumpectomy. As part of that workup they discovered I was moderately anemic (ferritin 7, hematocrit 30 I think?) and my breast surgeon sent me to the GI. My colonoscopy last year had two precancerous polyps - he felt there was virtually no chance that I had cancer so quickly. (Strong family history for colon cancer.) Ordered a SBFT. Here are results:

" no evidence of ulcer but did show evidence of active CD in terminal ileum. Evidence of separation of bowel loops... abnormal terminal small bowel with question of fistula consistent with Crohn's disease."

In the "also ran" category, I have also been to OB-GYN twice in past year for very significant lower left pain - they keep ultrasounding looking for ovarian cysts - they see nothing. Keep telling me it's not CD related since it's so "low" and on the left. And, I now have notable and worsening lower back and knee pain - especially in morning or after sitting. I thought I was just getting old -- am 49. :-) People have commented on me "limping." But pain is less with movement. Not taking ibuprofen due to CD. Sometimes use heat or ice.

So, SBTF results, anemia, pain in back and knees, and severe lower left (not right) pain -- what do you think I'm in for? I'm a little concerned about the fistula reference...should I be worried about that?

I've had a relatively good few years. Discontinued both Pentasa and 6MP 2 years ago (doctor preferred I stay on Pentasa, but gave me the choice) ...am I paying the price now?

Any thoughts appreciated as I wait for this GI call - surely won't be until Thursday.

Happy 4th.
Posted 7/4/2012 3:18 AM (GMT 0)
Bummer - yes, I think you know there's active disease. Whether that's the price you've paid for dropping your meds? who can say. There's no reason why you can't have Crohn's in the sigmoid colon or rectum (lower left pain). And the note about a possible fistula would scare me. I've never had fistulizing disease so I don't know how that goes, but I think you need to get scoped, or at least get a CT scan with contrast so someone can see what's going on.

I know you've read my post about my current situation so I can totally relate about the knee pain, and the lower back, too. It seems this time around my joint pain is so clearly linked to bowel trouble that it's like someone put a billboard up on the road - RIGHT SIDE PROBLEMS - SCOPE AHEAD. Yours might say - INFLAMMATION alert: LEFT AND RIGHT SIDE! LOL.
Posted 7/4/2012 1:21 PM (GMT 0)
Kazbern - so true LOL. Interesting that my GI was completely uninterested in the left side pain - I'll ask him about that again. Thanks so much for the reply. I believe the next thing is the CT scan - he mentioned that in his letter to me as well as a medication plan.
Posted 7/4/2012 1:54 PM (GMT 0)
Here is my lesson learned about CT scans - my GI had me get one last year and never told me to do any prep. The contrast could not get into my large colon because it was full of stool, so we lost any opportunity to evaluate that part of my anatomy. Kind of really tee's me off, but water under the bridge, blah blah blah. Anyway, talk to your GI about prepping your bowel before the scan. Not a totally clean prep like for a scope, but at least enough prep to get your bowel empty.
Posted 7/4/2012 2:02 PM (GMT 0)
Good advice - thanks Kazbern...haven't had a CT since my dx in 2007. I guess I"m most anxious about the possible fistula. Seems as if internal fistulas are sometimes left alone? Not sure what meds GI will be recommending.

I edited my original post to clarify that I went off Pentasa after discussion with md - didn't just "go rogue" :-)
Posted 7/5/2012 6:31 PM (GMT 0)
Spoke to GI today. He says he thinks the fistula is probably a false finding. Wants to move slowly. Restart Pentasa, then re-evaluate to see if we should add Imuran or something stronger, and do a CT scan in 8 weeks.

He now acknowledges that the lower left pain might have been CD related after all - again, says we'll know more after CT scan.

I forgot to ask him about the back/knee pain.
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