Colonoscopy results show no inflammation but I still don't feel like i'm in remission?!

I struggled for a year with this issue and finally decided to adopt a gluten free diet to see if that was part of the problem (my GI suggested this along with many friends, peers, and the HealingWell forums).

A GF diet definitely resolved many things for me. I still struggle with slow motility and have added psyllium to my day to try and keep things moving. It's a continuous project.

Oh gosh. Here comes the IBS diagnosis right around the corner.

Let me get this straight though, your doctor says the colonoscopy results show nothing wrong with your colon while at the same time he is saying that he thinks the meds are having a negative effect on you, even though those same meds put you into remission? In other words, I guess he's trying to say that your UC is in remission and that your remaining symptoms are due to your meds? None of that adds up in my book and I think he has made a major mistake in taking you off the meds that actually put you into remission. In my opinion I think your meds have beaten your UC down to undetectable levels but that it is only 95% under control and the other 5% (which is undetectable) is responsible for your remaining symptoms. If I'm right then it won't be too long until you start getting worse due to med withdrawyl. I hope I'm wrong.

Yes, this just happened to me (thanks gary for giving me a wonderful intro to this topic lol, I figured you might be referring to me...hahaha) and my GI said it was my IBS that is now causing me issues, but he wouldn't dare take me off my med (Humira) which finally just put my crohn's colitis in remission, in fact he won't even let me drop back down to biweekly shots because he's so freaked out about keeping my crohn's colitis in remission....so I am working with a dietitian and a therapist about the mind-gut connection and GI said give te thereapy another 4 months to see if things improve (she's a therapist that works right in my GI's clinic and specializes with IBD, IBS, GI issued patients) then after that if I'm not where I should be (I still have frequency and some urgency issues with my somewhat still constipated stools) then we are going to do biotherapy to teach my brain and gut to work together, to make the proper signal work properly again since IBS is a DYSFUNCTIONAL syndrome and NOT a disease (so nothing like inflammatory bowel disease) the biotherapy seems to be very successful for IBS patients.

I knew when my GI told me my IBD was in remission that I still didn't feel right tummy wise and he had suspected 14 yrs ago that I likely had some IBS issues on top of my CD issues....he was right, but I trust him, he is one of the top lead researchers for IBD in Canada and has spent much time at the infamous Mayo clinic, he has credentials and smarts and he's super open minded and easy to work with, never condescending and brushing off ideas since he knows there are other bowel issues besides IBD that people struggle with.

He referred me to the dietitian and the therapist to work with my issues I'm still having rather than most docs that would just keep pushing more meds or telling me I'm crazy and there's no way I could be having bowel issues when the scopes show remission, he's a great GI and I'm very luck he takes the time and listens and believes and understands that there's more than just IBD or cancer that can cause gut issues.

I've had this for years. SCD seems to be helping the lingering urgency and loose stools (no other symptoms). I also recently developed autoimmune arthritis. I think the arthritis is a sign that the IBD wasn't fully and truly in remission, given it seems to be resolving with SCD. But who knows.

It's so simple to diagnose IBS even I can do it. You don't need any medical schooling at all. If a patient is having symptoms and they can't find anything wrong then you just say it's IBS. How much simpler can it get than that? Common sense tells me that something is wrong with that train of thought somewhere. I know for a fact that I'm not that smart. Common sense also tells me that if you were never diagnosed with IBS before, you come down with IBD which goes into "remission" but you're still having problems, only to now be diagnosed with both IBS and IBD, that there is a connection and a relationship there someway, somehow. It's not two totally unrelated diseases (or syndromes) which just randomly happen to strike you at the same time.

garylouisville said...
It's so simple to diagnose IBS even I can do it. You don't need any medical schooling at all. If a patient is having symptoms and they can't find anything wrong then you just say it's IBS. How much simpler can it get than that? Common sense tells me that something is wrong with that train of thought somewhere. I know for a fact that I'm not that smart. Common sense also tells me that if you were never diagnosed with IBS before, you come down with IBD which goes into "remission" but you're still having problems, only to now be diagnosed with both IBS and IBD, that there is a connection and a relationship there someway, somehow. It's not two totally unrelated diseases (or syndromes) which just randomly happen to strike you at the same time.

Well Gary, I'm still LOL literally that you still think this way...my GI has credentials that most GI's don't and never will so ya I will believe him over anyone else when it comes to how he explains IBS and IBD coexisting (which I've tried to explain to you)....why don't you just say that anyone who is still having issues with their IBD but scopes show they are inflammation free MUST have microscopic colitis and that's the only explanation because there's no way anyone that has IBD can have IBS too....that's pretty much what you are saying and it's ridiculous and sad that you would try to convince others (especially newbs to the site) that your way is the only plausible way because YOU can't get your head around the fact that some people with IBD can also have IBS when in fact the medical community even knows they can, they do have research to back them up Gary, all you have is your issue with believing it's possible to back you up....which is nothing.

If you knew anything about IBS (which clearly you don't cuz you still come across as not believing it exists, even though you've tried to backtrack those words in other discussions we've had on the issue) you'd know that IBS can in fact be random enough to strike an IBD at some point even while they are flaring with their IBD, but you refuse to believe it for whatever reason which is fine but trying to confuse or steer others that are suffering with both is pretty lame on your part...you aren't an expert, my GI is and I'll take his word over yours any day especially when I'm the one that experienced both conditions at the same time and am now only experiencing the IBS (oh and the lactose intolerance too, must be hard for you to believe a person could have 3 separate GI issues eh!). Imagine how many people that have IBD and IBS that come to this board and read your opinion of the 2 coexisting together and believing you and ending up suffering with their IBS that you've convinced them they don't have, rather than treating their IBS for what it is, that's what pisses me off more than anything about your opinion because I personally don't care if you believe they can coexist together or not, I live with it so I know it does/can and I accept that I have both conditions but others that are new to the world of IBD and IBS cosexisting for themselves are the one's that you're hurting so I take offense to that.

One more time just for you Gary, IBS can develop for an IBD patient (stats from research show 20% specifically for CDers) and commonly is caused by physical and/or mental-emotional stress, the fact that having ongoing CD with long and severe flares can increase the risk for the development of IBS due to IBS being highly driven by stress and diet...IBD is not necessarily considered to be affected by diet but IBS is and there is some, but very limited research on stress and it's affects on IBD compared to IBS.

I don't think every IBDer in clinical remission with their IBD automatically has IBS, they could have a multitude of things going on or even just one other thing that's not necessarily IBS, it could be lactose intolerance, it could be Celiacs, it could be cancer, it could be food poisoning it could be a ton of things...when I share my experience that's all I'm doing, I'm NOT telling people, "hey you must have IBS like I do then" I'm simply sharing my experience and that's why I also tell people about my lactose intolerance....point is, there are many things that can coexist with having IBD that can be similar to IBD, lactose intolerance for one example is very easily masked by having an IBD, I had no clue that lactose intolerance was one of my issues as well until I was tested for it.

You have a hard time understanding why anyone could believe there is no relationship in any way, shape, or form between IBD and IBS.... but you aren't satisfied when I explain that as my GI explained it to me, "when you've been suffering a longer than usual IBD flare that also happens to be severe with symptoms, the stress of that alone (what it does to your body and your mind----mind-gut relation) can increase your risk to also developing IBS, a dysfunctional disorder that has nothing itself to do with inflammation but rather the mind-gut relationship. But you refuse to acknowledge that explanation....which is in actuality is one of the relationships to IBS and IBD coexisting.

Saying IBS possibly a second cousin to IBD is the same as saying cancer is a second cousin to IBD....you know the increase of colon cancer for an IBDer increases with the longer and more severe one's IBD in the colon is. But you don't think the same can happen with IBS because you've already decided that IBS is a BS explanation when docs cannot figure out why an IBD patient in clinical remission is still experiencing strange bowel symptoms.

IBS can be very random, researchers has only been able to figure out only so much about it just like with IBD...if only the world was black and white, it's not, so trying to make a condition black and white that is still not well understood is going to have a lot of grey areas but that doesn't mean nothing about it is known or understood to some degree.

pb4 said...
I don't think every IBDer in clinical remission with their IBD automatically has IBS, they could have a multitude of things going on or even just one other thing that's not necessarily IBS, it could be lactose intolerance, it could be Celiacs, it could be cancer, it could be food poisoning it could be a ton of things...

This is really my bottom line main point. I see posts on here again and again and again (not from you), and from my own experience, doctors pull an IBS diagnosis out of their asses every single time someone with IBD reaches clinical remission and still has problems. It's like you have IBD, you reached clinical remission, you're still having problems, you've got IBS. It's never anything else. Never. As you pointed out, these symptoms could be from any number of things. Just because some doctor says you (not you personally) have IBS doesn't mean you do. Most of the time they just pull out the scapegoat diagnosis because IBS can't fight back and say, "No it's not me". I don't believe a lot of the people who post here really had a correct IBS diagnosis and it is really something else. That's not meant to insult those that feel they do have a correct diagnosis but it is important for people to know that IBS is used by doctors as a scapegoat diagnosis far too often when if they actually took the time to figure out what was really wrong they would discover that they are wrong about an IBS diagnosis quite a bit.

Maybe some doctors do that because that is the case for many, of course they make mistakes but think about how many people with IBD post here in comparison to how many more people in the world have it and don't post here, so you're only basing on people that post here, so that doesn't mean that every doctor does suggest IBS to their IBD patients, I'm sure any good doc would look at other possibilities causing their patients that do have IBD and still having issues with their guts while in clinical remission....

You can't know for sure that other people's docs haven't checked to see if it's possibly something else besides IBS that may be continuing to cause their patients grief, not all docs will tell their patients everything unfortunately, some of them take biopsies and don't even relay that info to their patients, they check for microscopic IBD (just one example) and find nothing, they don't see any cancer while doing the scope, they may have likely already tested them for Celiacs which came back negative, point is you don't know for sure what all tests IBDers have had during their clinical remissions to determine their IBS DX on top of their IBD....problem is you generalize too much (based on your own experience, seems you're not happy that your GI suggests you have some IBS issues going on) IBS symptoms can vary from person to person. IBS can also sometimes be harder to treat for many patients due to meds not working or struggles with getting their diet and/or stress in check.

You don't even believe in IBS, you think it's some form of IBD so no matter what I say to you it makes no difference, just maybe try to be a bit more respectful about IBS because I assure you Gary, I do have it (I know you try to imply that you believe me but since you're not believing that IBS is it's own entity then how can I expect you to believe anything in regards to it) I'm working really hard to get my IBS under control but that doesn't mean I'll always be able to keep it under control....fact is, if IBS were somehow related to IBD like you suggest then why wouldn't everyone in clinical remission (using the same meds to get there) all still have gut issues?

Yes and until then we really have no choice other than to go by what we are told about IBD and IBS...sure lots of things could be discovered at some point in the future but until then it is what it is whether any of us like it or not and the saddest thing of all is that too many of us continue to suffer even when we're told we're in remission, same crap, different pile unfortunately for us all...this isn't how I anticipated remission to be for me, then again I didn't think I'd ever reach it, then again what's the difference really, my life still mainly consists of going to the bathroom more than any human being should have to in a day after 24 long long long years.