remission or misdiagnosis?

[akduck]

Been a while since I posted anything. In 2012, after years of IB symptoms, I had a bowel obstruction that perforated. CT scan during that showed swelling at the terminal ileum. A scope / biopsy (supposedly?) diagnosed severe Crohn's in large and small bowel. I had a resection to deal with an abscess from the perforation. GI wanted me on biologics after surgery, I said no, he refused to offer any other treatment.
I saw an alternative medicine MD in 2013 who ran a bunch of tests, found wheat allergy, critically low vit D, B12 and a few others, and prescribed LDN. Stopped eating wheat, took a lot of probiotics / vitamins / supplements/ ate healthier 99% of the time and started CBD oil in July 2015.
Back to the GI for another scope in 2014 - he flips the report at me and says "now you HAVE to do what I say"... I have had no problems since since my surgery, so I did not go for the biologics. This Dr never listened to me, interrupted me, brushed off what I had asked / said, and I was angry and frustrated every time I saw him.
I finally found another Dr in Oct 2015. We talked, and he listened. he said his first choice for severe disease is biologics. I told him that with no symptoms, I have a hard time reconciling that I have severe disease, and asked why is that the diagnosis. He said because I had a blockage. I said people without Crohn's get blockages, and no one has ever looked at my small bowel! He said fair enough - ordered an MRI with and without contrast, and a bunch of blood work.
All blood test came out great. MRI results say NO mural thickening, NO inflammation, NO sign of active Crohn's disease! So, was I misdiagnosed, or did I get my gut healthy enough to put it in remission? The new GI was very surprised, as was my primary care doc.
We are waiting for the original GI to forward my medical records to the new GI. Next appt is in Feb 2016. I am willing to have another scope then to see if the one ulcer that showed in the 2012 /2014 scopes is still there. Any thoughts on this? Has anyone else managed to get these results without medication?

 

[buttER]

Congratulations on turning yourself around and getting better! And also congratulations on finding a GI that you trust and who will listen to you.

I suppose you will never know the answer unless you do get a repeat diagnosis of Crohns in the future. Make sure you do get regular check ups. I wonder what another scope will find.

 

[ronroush7]

I don't know all the particulars and I wasn't around when you were first diagnosed but I wonder if you are on remission.

 

[akduck]

Ron, I just hope they can determine if it is remission or a misdiagnosis. The Dr.s are pretty surprised at the test results, which is why we will do more tests and scope in Feb. Thanks for your support! I wish you well.

 

[ronroush7]

I wish you well also.

 

[my little penguin]

Anti-tumor necrosis factor (TNF) therapy, such as infliximab, is the most effective treatment for the prevention of postoperative recurrence. It is recommended as first-line prophylactic therapy for patients who are at high risk for postoperative recurrence, those who have tried but in whom AZA/6-MP has failed, or those who are intolerant of AZA/6-MP.[4,10] Multiple small randomized controlled trials and prospective open-label trials have found that infliximab and adalimumab are superior to placebo, mesalamine, and azathioprine at preventing postoperative recurrence. A recent systematic review and network meta-analysis examining the comparative efficacy of these drugs in the prevention of postoperative recurrence concluded that anti-TNF therapy appears to be the most effective prophylactic strategy.[11]

Postoperative natural history studies have taught us that most—but not all—patients will develop recurrent disease. Thus, initiating anti-TNF therapy in all postoperative Crohn disease patients would certainly mean overtreating a subset. This is not a trivial concern: Anti-TNF therapy is costly and is associated with a moderate risk for infection. Biologic therapies are also prone to immunogenicity with the development of antidrug antibodies and subsequent loss of response, predisposing patients to potential serious allergic reactions and leaving them with fewer treatment options.

Because the patient in this case is at moderate but not high risk for postoperative recurrence and did not try AZA/6-MP for the treatment of his Crohn disease before surgery, it is recommended that the patient first try AZA/6-MP before considering anti-TNF therapy.

For patient follow-up, early colonoscopy at 6 months after surgery is recommended on the basis of the recently published POCER study.[12] The POCER study found that patients who underwent early colonoscopy followed by treatment escalation based on endoscopic findings had significantly less endoscopic disease recurrence at 18 months after surgery compared with patients who had forgone early colonoscopy and treatment modification.

From
http://www.medscape.com/viewarticle/854055_2

Ldn is considered a treatment for crohns
So as above sometimes surgery induces remission for a while
More than a few members here had surgery induced remission for a time but later needed stronger meds
Key is surveillance since crohns can be silent on the outside but damaging in the inside

 

[akduck]

Thank you my little penguin. Now that I have a Dr. that treats me like a person instead of just another gut, I will continue to monitor. Hopefully the scope in February will tell us more. I am willing to take medication, just not biologics at this time. The new Dr. has said he will not leave me untreated, so that is on the table. In the meantime, I am catching up on some immunizations so I will be prepared to be on meds. Yes, LDN is a treatment used, but not approved for Crohn's, so I didn't state that clearly. the first GI told me it was illegal for him to prescribe it... not true, but what he said...