Crohn's Disease Forum » Support Forum » Unusual Symptoms with Crohn's Disease

09-12-2017, 08:59 PM   #1
Join Date: Sep 2017
Location: omaha, Nebraska
Unusual Symptoms with Crohn's Disease


I am new to this forum/group. I wanted to reach out as I am in need of some assistance, if you will? I have been tested, poked and prodded over the last 4 years. I have spent thousands of dollars, literally, to be told the following ...
Doctor: "well you are my medical mystery. you don't appear to have crohn's based on your tests, but you respond to all of the medications for crohn's. although your last test shows that there is something that doesn't look right with the middle section of your small bowel. you need to have that looked at, but insurance probably won't cover it (which is true) because it is exploratory. i am not sure what to do, but come back in three months."

My symptoms include: severe cramping and pain; constipation chronically; pain every time I eat; extreme bloating if I eat more food than the size of a fist; extreme variances in appetite-- high and low; and extreme fatigue

I am reaching out to anyone that has had a similar experience or has a diagnosis in relation to some of these things?

Thank you so much!
09-14-2017, 11:13 AM   #2
Forum Monitor
Clash's Avatar
What is the test that showed something in the middle of small bowel? Was it an MRI? MRE?

What is the exploratory test the doc feels insurance won't pay for? Is it a pill cam? Have you appealed any decisions on that with your insurance?

Have you had fecal calprotectin stool test? Was that result in the normal range?

Beyond a followup in 3 mos did you speak with the GI about meds for symptom control? Have you considered a 2nd opinion? If things didn't resolve I wouldn't wait 3 months. If there is an issue in the part of the small bowel that you can't see by scope then I would push for the pill cam. Have your doc write it call and speak with your insiramce. A blockage occurring could be extremely serious and not something you want to discover or resolve in an emergency basis.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-15-2017, 07:28 AM   #3
Join Date: Sep 2017
Location: omaha, Nebraska
I already had the pill test. It didn't show what they needed to see. Apparently, the location is problematic, the middle.

I have tried to appeal the insurance with no success. I am too "high functioning" to qualify to need the procedure.

Most results were inconclusive and he said I didn't appear to have Crohn's disease initially, but he doesn't know what else it could be.... when I respond to those medications and because of my small bowel.

It seems odd to me which is why I reached out on this forum.
09-17-2017, 10:28 PM   #4
Join Date: Jul 2012
Location: Oshawa, Ontario

My Support Groups:
When I've experienced those symptoms, it's always been a partial blockage which ended in resections. It takes an MRE to convince the Dr's what I'm feeling is legitimate and needs attention. I had 3 surgeries in the last 5 years all with the same symptoms...constipation, weight loss, loss of appetite, bloating, no gas being passed, abdominal pain and nausea. Good luck to you...keep the pressure on the Doc's and insurance!
September 2012 - SB Resection, 28cm
March 2014 - SB Resection, 40cm
October 2016 - Bowel obstruction, adhesion removal on small intestine

Meds taken:

Currently taking:
Imuran 125mg
Remicade Infusion 600mg every 6 weeks
09-18-2017, 09:37 AM   #5
Join Date: Sep 2017
Location: omaha, Nebraska
Thank you!

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