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Crohn's Disease
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Posted 1/28/2011 4:55 PM (GMT 0)

Hi, I am a 36-yr-old male, diagnosed 22 years ago with Crohns.  It's in my terminal ileum.  "controlled" by meds, and have not had surgery (yet).  I do have stricture in the small intestines. 

"controlled" means that active flares respond to a course of steriods, then has varying lengths of remission by other maintenance meds.  Remission lengths have been as short as 6 months and as long as 3-4 years.  Remission duration was much shorter when I was first diagnosed in the late '80s, but as doctors found what seemed to be a good combination of maint meds for me, the remission durations lengthened. 

I had a flare around Sept/Oct 2009.

Another flare in Oct 2010.  That steriod course ended early-to-mid December.  But I was flaring again by the end of the month. 

Dr. put me back on steriod at slightly lower dose and ordered CT enterocyclosis Jan 17.  Concerns about strictures/narrowing and possible resection were mentioned.  She has a summary of the exam results but not yet the details (how much is considerd inflammation vs. scar tissue, length of affected areas, etc.) 

One question I have, is how long does it normally take for your doctor to figure all this out, diagnose and recommend the next step in treatment?  Obviously the risk/possiblity of surgery is looming over my head and making me much more anxious and inpatient than the "normal" flare.  And I've not been through this possible surgery situation before.  I'm in no hurry to have surgey, and am hoping that a switch to something like Humira is a potential option.  It's also frustrating that she has given me summary results, but can't get more details because the radiologist is on vacation (is she limited to one radiologist?)

In the past, the doctor's nurse has typically responded within a 24-hour period, gets my symptoms/issues, and if necessary, orders bloodwork.  I get the blood order same day, have it drawn same day, and have results within 2-days, including any prescriptions deemed necessary.  Now, the doctor's office hasn't been returning calls, or only after several days. 

Is it unreasonable to start to get a little concerned about this "dragging on" for 5+ weeks without seeing a resolution/response in sight?  What is the length of time you have had to have a test, get results back, and get a plan together for how to treat it?

Posted 1/28/2011 6:15 PM (GMT 0)
Hi clonehead and welcome to Healingwell. Well I had a CT Enterography last summer and I got the results fairly quickly, but one thing my doc said was that it doesn't show if there is any inflammation or ulcers.

Now I have had 2 resections myself and usually the other test required was a small bowel follow thru. That shows I guess if a stricture is comprised of inflammation or scar tissue.

If I were you I would follow up with the doctor again, and ask for an update. Hugs!
Posted 1/28/2011 8:06 PM (GMT 0)
It took me months to get a correct dx after realizing I was having constant issues.  And even longer to get the meds going and finding the right combo.
Posted 1/28/2011 8:22 PM (GMT 0)
Is CT Enterography and Enteroclysis the same thing? My impression was that this exam would identify whether I would respond to medical therapy (like trying Humira) or whether I would need surgery. My exam consisted of ng tube, small bowel infusion with water, IV contrast, then CT scan.
Posted 1/28/2011 9:07 PM (GMT 0)
They are the same test.

The reason your doctor has to talk to a specific doctor is that the radiologist who read the study was involved in the test. Some tests can be read by any radiologist, but some have the radiologist involved in the test (GI's, SBS, CT Enteroclysis, etc.) and other radiologist will not discuss a test that was done by someone else.

Don't get yourself stressed about whether or not you'll have surgery. You know stress will affect you, and you definitely don't need that. I can see how frustrating it must be...to find that things are different now, but nothing different is being done...it's hard to be in limbo....waiting.

Maybe you could ask the doctor what the plan is depending on the results. Though starting Humira vs having surgery are so completely different so there's nothing you can do to prepare for either until your doctor determines which route you'll go.
Posted 1/29/2011 12:19 AM (GMT 0)
I think 5+ weeks is too long. If it were me I would start bugging them. It really is awful to have
to wait so long. Good luck!!
Posted 1/29/2011 5:21 AM (GMT 0)
Wow, this makes me appreciate my husband's GI so much more. My husband got a CT enterography Friday morning (done by 10:30), and got a call back from the GI at 2:30 pm, same day. I think the radiologist really interprets what the imaging shows, and the doc takes actions based on what the radiologist observed.

A CT Enterography can show if there are blockages or narrowing or if the bowel appears thickened, or if there are air pockets (which can indicate abcesses) or fistulas. However, the CT cannot say with a blockage/narrowing in the bowel is because of inflammation or strictures (scar tissue). The bowel wall thickening is usually due to inflammation.

I definitely think 5+ weeks is way way way too long to wait for the results of a CT enterography. I'd be bugging them constantly.

I hope you get your answers soon. Also, I think a lot of times docs are good about calling when there is something wrong, and not so good about calling if things look normal. So I'm going to keep my fingers crossed for you and hope that that's the reason you haven't heard anything. I hope things are fairly normal.

PV
Posted 1/30/2011 3:43 PM (GMT 0)
My current flare has been going for 5+ weeks, but getting the results of the CT is only 2 weeks (and counting.) I certainly agree that my doctor is better about calling when something is negative/problematic, but less likely to call to say everything is OK. In this case, she is concerned that things aren't OK, and I guess it is just the lack of communication that is frustrating.

The doctor called me directly on Thursday (Jan 20) in the evening when usually the nurse calls me with information during normal business hours. We talked for quite a bit, but she didn't have enough details from the radiologist to recommend a specific treatment plan. Her plan was to talk with him on Friday and call me back. I didn't get a call. I figured that meant they weren't able to get together. I call Monday at noon to follow-up. No response by Wednesday Jan 26, so I called again. The nurse did return my call Wednesday to say that the radiologist was on vacation on the previous Friday. She didn't know for how long, or if was still out of the office today, but was going to check with my doctor and let me know. I left another message Friday. I haven't heard back.

I figure that he's out of the office all week, and I'm SOL until he gets back. It's just frustrating that they said results would come back Jan 19th or 20th at the latest, but there weren't enough details in the radiologist report for my doctor. Then, the radiologist is out of town and I no one will say "he's out of town until this date, and we'll talk after that date."
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