Anyone had low inflammation but still have symptoms?

[Idiom]

Despite tests showing I currently have low inflammation and my Crohn's should be stable,
I get phases of diarrhoea and cramping lasting for weeks. Leaving me unable to leave the house.

This has left my doctors scratching their heads and me trying all manner of (typically more IBS) treatments to no avail.

Has anyone with Crohn's experienced similar, only to find another gut related condition was the cause?

 

[jonique]

Despite tests showing I currently have low inflammation and my Crohn's should be stable,
I get phases of diarrhoea and cramping lasting for weeks. Leaving me unable to leave the house.

This has left my doctors scratching their heads and me trying all manner of (typically more IBS) treatments to no avail.

Has anyone with Crohn's experienced similar, only to find another gut related condition was the cause?

Has your doctor discussed bile acids Diarrhea? I discovered it a couple of years ago and now take cholestyramine powder which helps the diarrhea.

 

[eleanor_rigby]

Yes my latest fecal calproctectin was 36, MRI completely normal, colonoscopy showed 3 superficial ulcers smaller than 3mm at the terminal ileum. This is miles better than my colonoscopy a year ago yet my symptoms don't reflect this. I have pain on my right side where my terminal ileum is, frequently get fatigued if I walk more than a couple of miles and sometimes get bad gas and discomfort pains. I don't buy the IBS crap as after my surgery in 2011 I was in complete Crohn's remission and had NO symptoms whatsoever. I just don't get it! I feel ATM I may just have to live like this and at least be rest assured I'm not about to have a perforation :-/

 

[Glockola]

It is very common to have both IBS and IBD at the same time. The longer you suffer from IBD the more likely you are to also develop IBS along with it.

After the intestines heal up from previous inflammation it leaves us more sensitive.

Even if we don't have any high levels of inflammation like high CRP and fecal calprotectin on lab tests. The intestines are still left permanently messed up.

 

[Idiom]

Thanks for your replies, sorry to hear people have suffered similar frustration.
I did have a bile malabsorption test and it came back negative.

I'm wondering if it could be small intestinal bacterial overgrowth (SIBO).
Does anyone have knowledge of this?

I can understand us having sensitive guts, just feel as though these symptoms have sprang up after a period of good health. It's tough not having all the answers.

 

[MizzSarah]

My blood tests always confused doctors for the 7 years before a Crohn's diagnosis. I had elevated inflammation coming up in blood tests but they would assume that was because certain joints would be swollen at times. keep in mind that my level of inflamed never was extremely elevated. I was above normal but not too high. I had lots of joint related issues prior to the onset of Crohn's. I had a Crohn's marker as well(my dad has Crohn's). Wasn't taken seriously till I ended up experiencing everything but the extreme weight loss that signals pontential Crohn's. a colonoscopy was the only way they found it.

Most Crohn's suffers experience the Crohn's symptoms prior to the joint issues but mine came in reverse. My dad was complete opposite of me.

My GI uses the colonoscopy as the only gauge to determine where I'm at. I'm inflamed in more places then just my intestines which I think stumbled many specialist I've seen over the years.

 

[Pug Gamer]

I know exactly how you feel. I have been having obstructions and felt manic at times with my symptoms since having my crohns "under control" with all tests coming back good, or borderline. But felt so awful, i was given a load of medication. One was antibiotics for sibo, and buscopan. I decided to take one at a time incase i didnt know what worked or reacted. Started with buscopan, and it has worked! I am off of steroids, living on my tramadol, buscopan and azathioprine and doing the best i have done! I dont ever have zero symptoms, but so much easier to live with. I would give the buscopan a go, i think my ibs was kicking off my ibd. Due to my stricture i think i will always have symptoms, but i can live with how it is now.

 

[Glockola]

There can probably be a lot of residual inflammation, scaring and also sensitivities in nerves following previous flares.
I think it often escapes detection on routine tests.
Heck, even a few years ago physicians didn't even know anything about microscopic colitis.

 

[rorho19]

I have two strictures just above the illeocal valve - for 4 years now. Despite calproctine of only 11 or 12 and no inflammation showing in the bloods I have been experiencing increased level of pain from stuff trying to get through the strictures...they said they must have turned fibrotic and are talking about my first surgery- resection.

So I know this is a different scenario to you as I suffer from C not D but it is possible for symptoms to get worse without inflammation. The main factor in my deterioration has been going back to a desk job after a year renovating a deceased parent's house..don;t know if it is the cramped desk position or more stress or both but has made symptoms considerably worse.

 

[SaxLady]

I think it is correct you suspect SIBO. SIFO is also a possibility. My Dr (associated with Johns Hopkins, an associate of Gerald Mullins (The Inside Tract) told me Crohns is associated with SIBO in many cases. Mine is.