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Gi says I’m in remission ***?

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Ulcerative Colitis
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Posted 6/9/2018 4:43 AM (GMT 0)
My gi did a stool sample test and just got back to me saying my levels are good and that I’m in remission. How is that even possible if I’m having mucus/diarrhea a lot of the times? On top of that frequent trips to bathroom and stomach pains. makes no sense & now there won’t be any changes to my meds. I’m so upset right now it’s not even funny.
Posted 6/9/2018 12:23 PM (GMT 0)
There are different kinds of remission, GI's care about clinical remission, meaning inflammation is not visible or present by testing. You and I care about symptomatic remission because symptoms make our life miserable...or not.

Stool test being used to say you are in remission? I haven't heard of that. Usually it's a colonoscopy comparing what is seen with previous c-scope and tests which show inflammation levels, or white blood cell counts.

Is your GI correct? In his/her mind, yes. In your mind/body it's no. If your GI is not responding to your asking for help getting your mucus, pains, D and urgency better they are sub-par at their job. I would not accept that you are in remission if you have urgency. Ask your GI for specific help getting your symptoms better. No help? then see another GI.

Have you ever used mesalamine enemas? They can really help with too many/urgent BM's. My D was solved with diet modification. Cramping can be helped with dicyclomine RX (Bentyl brand name) very inexpensive.

Good luck.
Posted 6/9/2018 2:30 PM (GMT 0)
Ask him to take a look-see with a rectoscope in-office.

q
Posted 6/9/2018 5:40 PM (GMT 0)
FCP Stool tests and CRP blood tests are not good at spotting very limited and mild inflammation.
Posted 6/9/2018 5:56 PM (GMT 0)
You are flaring this is ridiculous-- ask to get scoped or get another doctor. Ive sort of had the same thing happen to me-- but I was at least scoped. God it's upsetting that Remicade isn't fully working for you. I guess you need to add other meds to it. I'm sorry.
Posted 6/9/2018 7:26 PM (GMT 0)
I would repeat the stool test at least if I were having symptoms like you describe. Once, I had a normal FCP while I was heading into a flare up. I retested a couple weeks later, and from the next test results, it was clear that I was flaring.
Posted 6/9/2018 8:10 PM (GMT 0)
Thank you everyone for the help/support. I’m going to be extra persistent and if there is no changes it’s time that I switch doctors.
Posted 6/10/2018 2:04 PM (GMT 0)
Yeah, Id get a new doctor. Mine listens to my symptoms, first and foremost. Even at my worst, having bloody D 25 times a day, my blood tests were normal. I have never had a stool sample test to check for remission, only for this like c diff and other infections. Is he just looking for blood?
Posted 6/10/2018 3:44 PM (GMT 0)
Unless the doc takes a look and you don't have any gastro invaders or no change in diet that can cause diarrhea, etc.....request a new doctor.

What meds and supplements are you on? Maybe make sure you have an updated signature and click on the box to include it in all posts.

q
Posted 6/10/2018 6:59 PM (GMT 0)
@Jay99 --- Read the article in the NCBI "IBS-like symptoms in patients with ulcerative colitis".
Even with UC in clinical remission, these IBS-D&C symptoms can occur. I've had IBS D& C at the same time. Throw in a thrombosed hemorrhoid and I can tell you with certainty that this makes for a poor quality of life.
Posted 6/10/2018 10:03 PM (GMT 0)

James Patterson said...
@Jay99 --- Read the article in the NCBI "IBS-like symptoms in patients with ulcerative colitis".
Even with UC in clinical remission, these IBS-D&C symptoms can occur. I've had IBS D& C at the same time. Throw in a thrombosed hemorrhoid and I can tell you with certainty that this makes for a poor quality of life.

If a colonoscopy shows no inflammation (which the OP did not say was the case) and symptoms persist then IBS could be the cause. I asked my GI whether he thought my symptoms were IBS and he said UC. He's been in business for many years so I'll go along with him, esp. since IBS has few treatments so what's the point of calling it IBS if there's no treatment. They call it IBS (in my opinion) if they can't call it anything else based on physical evidence. It's a diagnosis of "exclusion".
Posted 6/18/2018 9:31 PM (GMT 0)
I've been through a couple G.I. doctors until I found one that worked with me. He lets me know what he thinks, but he supports what I want to do (i.e. continue breastfeeding), and tries to work with it. He does NOT accept diarrhea/cramping as remission, I can tell you that much. I'd look for someone else.
Posted 7/4/2018 2:25 PM (GMT 0)
Sorry Jay99. I hope all is well with you.

Post Edited (James Patterson) : 7/4/2018 4:51:20 PM (GMT-6)

Posted 7/4/2018 7:23 PM (GMT 0)

James Patterson said...
Upon further review... I was not in remission. ---Fecal Calprotectin by ELISA 7095 ug/g ABNORMAL ---(Ref Interval: >120 ug/g). ------------------ Lactoferrin by ELISA 16.0 ug/mL ABNORMAL --- (Ref Interval: >7.24 ug/mL). Was tested for numerous Bacteria, Parasites, Viruses and Diarrheagenic E. Coli/Shingella. NONE DETECTED. --- On Entyvio since 08/23/17.---- Not quite getting the results I was hoping for.

Very sorry to hear it James. Please feel free to start your own thread. Try to think positive, something will work, maybe you can increase your entyvio dosing or add something to help get a better response.
Posted 11/7/2018 7:52 PM (GMT 0)
Jay
Are you still on Remicade? How are you doing? I am basically in the same position as your post here. I was wondering what you ended up doing.
Posted 11/7/2018 8:48 PM (GMT 0)

countess18 said...
You are flaring this is ridiculous-- ask to get scoped or get another doctor. Ive sort of had the same thing happen to me-- but I was at least scoped. God it's upsetting that Remicade isn't fully working for you. I guess you need to add other meds to it. I'm sorry.

Symptoms are not conclusive evidence of flaring. The are cause to look for inflammation with a scope and biopsies.

Some research has found that upto 15% of IBD patients continue to have GI distress (symptoms) even after inflammation (flare) is resolved. Some want to call this IBS secondary to IBD, some want to call this a new syndrome.

Your doc should be treating all symptoms as well as the IBD. But it is not "ridiculous" to say the IBD is in remission when symptoms remain because IBD is defined as an inflammatory disease.
Posted 11/7/2018 9:15 PM (GMT 0)
This article about symptoms when in remission is open access and worth the read.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4734957/

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4734957/ said...
IBD-IBS prevalence data are very variable due to heterogeneity in remission definition, diagnostic criteria and exclusion criteria. Pooling prevalences of the most homogeneous studies shows that about a third of quiescent IBD patients will suffer from IBS-like symptoms.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4734957/ said...
Several pathogenic mechanisms can explain the occurrence of IBD-IBS beyond a merely random effect. Dysmotility, visceral hypersensitivity and increased mucosal permeability are the best studied ones.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4734957/ said...
Even though quiescent IBD patients with IBS-like symptoms are not at risk of suffering direct complications of IBD such as perforations, abscesses or toxic megacolon, their symptoms can be very intense and significantly reduce their QoL, maybe as much as an actual flare does. ... all of them consistently show that IBD patients in remission who have IBS-like symptoms have a worse QoL and a greater probability of suffering from depression or anxiety than those who remain asymptomatic. ... an effort should be undertaken to recognize and treat this condition as satisfactorily as possible. Evidence on best management options of these patients is almost nonexistent. It seems reasonable to use the same drugs that have proven efficacy in IBS, such as antispasmodics and antidepressants, while we wait for future prospective trials.

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