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Negative Test Results; Recurring Flare-Ups During Remission - How and Why?


Thu, March 07, 2019 2:23 PM

I have suffered with Crohn's for a number of years and currently taking Remicade infusions. I had a colonoscopy recently, and the Dr inidcated my colon looks great. No Colitis and Crohn's is in Remission. However, I continue to have flare-ups. There is a definite trend of flare-ups every other week, and they are agonizing. It usually takes 3 days minimum to get strength back enough to function; sort of. I am never 100%, always tired, and not even sure what "normal" is? I have flares even when I eat bland foods like a baked potato, or toast as an example. I don't understand how all of my test results are always negative, my colon looks healthy, I'm in remission / no colitis, but yet, I have flares. Is there anyone else experiencing the same issue? I ask the Dr and get the same response / run-around. It's because he doesn't know. I am really tired and can only take so much pain and so many "gut hangovers".  Quality of life and the ability to work a job is very low. Is there anyone else who has experienced this, and if so, what did you do to remedy this problem? Diet is not the culprit as I eat plain, bland food; no seasoning. I don't understand what the problem is.

FPO Dan Kberg
Joined Dec 22, 2018

Thu, April 11, 2019 8:40 AM

Reply posted for kirstenhearnes.

I appreciate having an actual "conversation"!  I realized, after looking at all the posts and the number of "views", that people seem to read the posts, but rarely reply.  I guess I am not up on all the diet lingo.  I tend to stick to low carb, low sugar, primarily because I had gastric bypass surgery 15 years ago.  I don't tolerate a lot of sugar, and because I can only eat small amounts of food at a time, I have to maximize my daily intake of protein as much as possible.  I can eat carbs (breads, grains, etc.), but I try to eat my proteins first - same with veggies.  If I get full on carbs or veggies, then I run the risk of not getting enough protein in my diet.  Of course, all of this is compounded now by Crohn's disease.  In the last year, I lost 40 pounds from a healthy weight of 140 (5'10"), and all of my lab values are now totally messed up.  

I'm trying to eat 6 small meals a day that are as high calorie as possible, given the restrictions and tolerabilities I have.  I don't tolerate protein shakes (most of them) because of the sugar - even the ones for diabetics seem to go right through me.  I sometimes can handle the Atkins Shakes, but not always, and it's not really worth the risk of profuse diarrhea, ya know?  

I don't think there is a "perfect" CD or UC (or IBD) diet.  I think people mean well.  I think that this disease is so frustrating because it is so unpredictable.  We may follow a particular diet and then have symptoms flare up despite sticking to the diet religiously.  
I tried gluten-free and had no symptoms for awhile, but started having symptoms again, despite the diet change.  That isn't to say that we shouldn't try different things, and sometimes cutting something out of our diet provides tremendous relief.  For awhile I kept a food diary when my symptoms were at the worst and I was limiting my diet tremendously.  However, as I was able to eat more normally, keeping the food diary became more laborious (though that is probably when I should be doing it!).  

Anyway, let me know if you find out anything more about the "negative" results - did you get the calprotectin stool test done?  

FPO crisanderson
Joined Apr 5, 2019

Fri, April 05, 2019 9:15 AM

Reply posted for Dan Kberg.

I'm new to the forum as well as fairly newly diagnosed with Crohn's (2016), so I don't know how much help I can offer.  However, I have a few questions.  How long have you been on your current medication regimen?  From what I am understanding from reading, sometimes medications lose their efficacy over time in people who have been taking them a long time.  So, sometimes different medications have to be tried, or additional medications have to be added to boost the effectiveness.  

Another question:  I thought that remission was the absence of symptoms?  What tests are coming up negative while you are symptomatic?  Many (probably all) tests have false negatives (as well as false positives for that matter).  I have had 3 colonoscopies so far, and each of them have shown "indeterminant" but consistent results for Crohn's disease.  After the first one in mid-2016, I was on high dose steroids for close to 6 months, then was asymptomatic for about a year (remission, I guess?).  In early 2018, symptoms returned (had moved to different state), re-scoped/evaluated, same results ("pan-colitis with indeterminant results consistent for Crohn's disease").  My doc wanted to start me on Humira and Methotrexate, but wanted confirmation of IBD, so he ordered blood work - the complete Promethius testing.  By the time the blood work came back (which was totally negative for IBD), he had already started me on Humira and Methotrexate.  I am eternally grateful that he had already started me on the meds. I had such a positive response within several weeks.  The doc just ignored the results and paid attention to my response.

In the fall of 2018, I moved back to my home state and started back with my original GI doc.  Because of the move, I was off my Humira and Methotrexate for months trying to get health insurance started again, which precipitated a relapse/flare.  I brought her all those records, of course, ready for her to re-prescribe the meds that worked.  However, her immediate focus was on the negative Promethius test results, as opposed to my having responded so strongly and positively to the treatment for Crohn's disease.  Fortunately, she ran some additional blood work, including a calprotectin (had never been done before), and it was >2000.  I don't know what I would have done if the test was negative or if I hadn't been in an active flare.  

Sometimes doctors rely too much on tests (which, to some extent they have to in order to justify treatment to insurance companies), and not enough on clinical judgment and patient signs and symptoms.  There has to be a balance somewhere.  I'm a RN and a nurse practitioner, and I, too, find it hard to navigate the system.  

My advice, for what it is worth, is to understand that tests are not 100% accurate, nor are doctors. Patients can develop "tolerances" for medications (in other words, meds can lose their efficacy) over time in some situations.  If you find your doctor is not answering your questions, or unwilling to answer your questions, look elsewhere and look for multiple sources for answers to your questions, because there are, even in science, no right or wrong answers.  

FPO crisanderson
Joined Apr 5, 2019

Thu, March 14, 2019 10:26 PM

Reply posted for Dan Kberg.

You sound a lot like me - same 'remission' but with monthly flares and pain almost weekly, leaving me exhausted physically and emotionally. My husband has been researching for me and presented me with the keto diet as a way to reduce inflammation from sugar (all sugars, even medium chain triglycerides) and I feel it really helped. Look into it. It's demanding, but even after a bit more than a month of strict keto, my pain lessoned and my energy was different - more of a slow steady burn throughout the day (and I actually felt rested after sleeping which is a new concept for me). I backed off and switched to the specific carbohydrate diet (less demanding but same anti-inflammatory principal). Something to try. You're not alone. 

FPO kirstenhearnes
Joined Mar 14, 2019

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