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What is IBS, really?

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Posted 2/13/2013 9:15 PM (GMT 0)
O.K. about a month ago my doc diagnosed me with IBS in addition to my UC, which he claims is in remission and that my remaining problems of frequency and urgency are due to IBS. A scope has not been done recently. He said if I don't get better soon we will redo a colonoscopy.

Now I can see that if you are a person having symptoms and they can't diagnose anything like UC or Crohns that they would usually cop out and just label it IBS. I can understand that but if you have been diagnosed with UC or Crohns how can they really say you have IBS in addition to it? The symptoms are all so much the same, especially since everyone presents differently. Why can't it be that all of your symptoms are due to UC or Crohns and the thing is you are just not totally in remission? There is no way to actually test for IBS so they are just taking a stab in the dark or taking an educated guess that you have IBS. Sometimes I think they just make this crap up as they go along. I am not convinced at all that I have IBS, although I am trying to keep an open mind that it is possible that I do. I don't know if any of this really even matters but it kind of gets under my skin that they have proof that I have UC and yet want to diagnose me with something else that basically has the very same symptoms as UC, even though there is no definitive way of diagnosing IBS. I would like to hear what others actually think of this, if you can ignore whatever it is your doctor's say as being the word of the lord. I have to admit that in the back of my mind there is no such thing as having both UC and IBS or Crohns and IBS, that all of your symptoms are due only to what you are actually diagnosed with using proven tests.

Posted 2/13/2013 9:25 PM (GMT 0)
ITA. IBS is the diagnosis you get when they can't identify any pathology. Since you already have a known pathology, it seems ridiculous to say you have IBS.

What if your GI said something like "motility disorders stemming from chronic inflammation" or "bacterial imbalance due to UC." Would that make a difference to you?

I think there are a lot of things about the digestive tract that are essentially mysteries to us and our DRs and they do not know how to make us all better. The question for you is how much more diagnostic testing and/or treatment options do you want to try in order to feel better?

We already know you won't try a gluten free diet. What is on your list of things you might consider trying? Ultimately, treatment of this disease is probably mostly empirical.
Posted 2/13/2013 9:27 PM (GMT 0)
Personally, Gary, I think it's crap that your GI diagnosed you with IBS w/o doing a scope, because you very well could still have some active inflammation. An IBS diagnosis is made when tests for other stuff (IBD, Celiac disease, etc.) all come back negative, but you've still got symptoms.

I do think there is such a thing as having both IBS and IBD, because people on this board have had clean scopes, but are having issues with diarreha and stuff at the same time.

Of course, if I'm ever in this situation (clean scope, but having symptoms), I'll probably try eliminating gluten and dairy to make sure I haven't developed a sensitivity to either.
Posted 2/13/2013 9:32 PM (GMT 0)
Just want to add that in your shoes a few years ago, I went for an abdominal u/s, a HIDA scan and a CAT scan with contrast to try and uncover why I had upper right quadrant pain.

The answer came from the CAT scan - a bowel full of stool. I was having, and continue to have, a motility problem which leaves me with a pattern of backing up stool, followed by a day of moving my bowels more than once (or twice or three times), back to no movement. I first used miralax to even this out, then switched to psyllium. It's not perfect but not bad, and the upper right quadrant pain is not much of an issue anymore. Neither is it gone. I never had this problem before my diagnosis. My last scope was completely clean.

The point is that I disagreed with the IBS talk also. I did further studies. I went gluten-free. I changed my treatment protocol. I still have motility problems but I'm no longer frustrated by being told I have IBS.
Posted 2/13/2013 9:42 PM (GMT 0)
I have had a clean scope and been diagnosed with IBS. I find the differences to be somewhat negligible but the handling of IBS is far simpler and easier to control than a UC flare.

I can take a probiotic, Pepto and drink a lot of water and not feel sick anymore with IBS. Sleeping is the only thing that makes me feel better when I'm in the middle of a UC flare.
Posted 2/13/2013 10:10 PM (GMT 0)
IBS is also linked to gut bacteria...check out this link...

http://www.medicalnewstoday.com/articles/245874.php

Posted 2/13/2013 10:15 PM (GMT 0)
I too was DX with IBS about 8 yrs ago now, on top of having crohn's colitis, my GI based it on my other symptoms that were more in line with IBS even though he saw from the scope that I still have active CD...it's hard for me to explain in words but I definitely noticed a difference from when I was just experiencing CD to when IBS issues started up as well.

He also said it was common for long time flaring IBDers to develop IBS as well because our systems get so screwy from the disease, it can in turn bring on IBS.
Posted 2/13/2013 10:24 PM (GMT 0)
from Wikipedia:

Some researchers have suggested that IBS is a type of low-grade inflammatory bowel disease.[57] Researchers have suggested that IBS and IBD are interrelated diseases,[58] noting that patients with IBD experience IBS-like symptoms when their IBD is in remission.[59][60] A 3-year study found that patients diagnosed with IBS were 16.3 times more likely to be diagnosed with IBD during the study period.[61] Serum markers associated with inflammation have also been found in patients with IBS (see Causes).
Posted 2/13/2013 11:58 PM (GMT 0)
I think most of what most of you think basically agrees with me - the IBS diagnosis is a load of crap. Now it may be different for those that do not have UC or CD to be diagnosed with IBS but for those of us who do have IBD I believe this from the previous post, "Researchers have suggested that IBS and IBD are interrelated diseases". To me this basically means it is the same thing, meaning that even if you have a clean scope, you are not disease free if you are still having symptoms. Instead, some doctors such as mine, prefer to say that your UC is in remission but now you have IBS. I believe it is the UC which is causing the problems and that it is not totally in remission, even if I were to have a clean scope (probably at a microscopic level that isn't easily detected). It is my belief that an IBS diagnosis is being used as a scapegoat so they can have something to blame.
Posted 2/14/2013 12:29 AM (GMT 0)
I think doctors make the distinction between UC and IBS only for drug treatment purposes but they won't say that. Why? Because doctors don't want to say "There's nothing I can prescribe you for IBS".

When it comes right down to it the superior position that doctors have is their right to prescribe Rx meds and do procedures and some of them (painfully few) are good diagnosticians.

Doctors can't see IBS, they can see UC. Of course they know IBS exists with sometimes just as awful symptoms as UC (minus bleeding) but they have no Rx for it and no procedures to offer.
Posted 2/14/2013 12:54 AM (GMT 0)
pb4: that was a good link. Has me thinking.................
Posted 2/14/2013 2:03 AM (GMT 0)
Glad you liked it gary!!

I've always found it strange that there can be 2 separate bowel disorders, one with inflammation involved and one without, but since they are 2 separate conditions, it's really not hard to believe that one patient can suffer with both. It's not surprising though that each of the conditions have a strong link to bacteria in the gut.

From my understanding when my GI vaguely explained it to me yrs ago, it's very possible and likely that a severe IBDer (symptom wise and length of flare wise) can also develop IBS due to the nature of severe IBD taking it's toll on how the digestive tract is disturbed so frequently (long period of time especially) that it can alter the GI tract from functioning properly and therefore develop IBS on top of an IBD.

It is true though, and I've had GI's admit to me, not enough is known about either IBD or IBS, but there are different meds used to treat each condition....a diet of daily fiber and regular daily exercise are 2 helpful ways to combat IBS, is what I've been told/and have read.
Posted 2/14/2013 12:38 PM (GMT 0)
I also get IBS symtoms without IBD issues. Especially upper right, like Kazburn
Posted 2/14/2013 1:25 PM (GMT 0)
I looked at IBS symptoms on a website, I think it was WebMD, and it talked about pain, pain, pain, and the Rome III criteria. I have never had any pain of any kind, any where, not now, not when I was at my very worst. According to what I read this is the one main criteria that is always present in IBS and I have never had it. I'm beginning to think more and more that I don't have IBS and that my doctor was just making up garbage because he didn't have any answers. I have had many people tell me, ones that should know, that my doctor is one of the best. I sometimes seriously have my doubts but I try and temper my judgement because I know that there are no doctors that have the answer for autoimmune diseases. They don't know the cause. They don't know the cure. All they know is how to treat the symptoms and they all use the same basic bag of tricks to do that.
Posted 2/14/2013 1:39 PM (GMT 0)
I also had a clean scope and was still having issues so my doc told me it was possibly IBS. I honestly don't know if I believe that. And I'm like you, I still question that diagnosis even to this day.
Posted 2/14/2013 4:37 PM (GMT 0)
I've just reread my responses to you and I think you might have misunderstood me. I don't agree with being told I have IBS. I believe all of my issues stem from IBD. I frankly don't care what anyone calls it, as long as I have a strategy to manage the symptoms and enjoy my life.
Posted 2/16/2013 4:56 AM (GMT 0)
I also have been told i have UC and IBS. I was first diagnosed with Ulcerative Colitis and then a few years later was told my new sympotms were IBS. I could actually tell that they were different i went from constipation to diarreah. I was very stressed at work, so my doctor told me to meditate. It actually worked. I think ibs was worse because i never new what would set me off, but with the UC i knew exactly what to eat/ not to eat due to years of practice. I am doing great now, but still every couple of months have an IBS flare that only lasts a night or two.
Posted 2/16/2013 4:58 AM (GMT 0)
I also have been told i have UC and IBS. I was first diagnosed with Ulcerative Colitis and then a few years later was told my new sympotms were IBS. I could actually tell that they were different i went from constipation to diarreah. I was very stressed at work, so my doctor told me to meditate. It actually worked. I think ibs was worse because i never new what would set me off, but with the UC i knew exactly what to eat/ not to eat due to years of practice. I am doing great now, but still every couple of months have an IBS flare that only lasts a night or two.
Posted 2/16/2013 7:17 AM (GMT 0)
The CCFA used to have a good article explaining the differences and such between IBS and IBD but I can no longer find the link....even though I had it bookmarked, it no longer takes me to the article at the CCFA, only to the CCFA website.
Posted 2/16/2013 11:01 AM (GMT 0)
Excellent thread- the thing is though, docs dont really have much of a clue as to what IBD is either- both are cop-out diagnoses- IBs (to docs) is "your gut does not function right but we dont see active inflammation and haven't got the slightest clue why so we are calling it IBS" while IBD is "your gut doesnt function right, it has active inflammation, but we haven't got the slightest clue why it is inflammed so we'll call it idiopathic i e IBD"...
Posted 2/18/2013 7:42 AM (GMT 0)
From the CCFC...

"You may have heard of irritable bowel syndrome (IBS) and wondered if it is the same as IBD. While often confused because their names are similar and their symptoms can seem comparable, the two are not the same.

Yes, both diseases affect the digestive tract. However, with inflammatory bowel disease, inflammation is the key characteristic. In irritable bowel syndrome it is thought that problems arise because of changes to bowel function or the way the brain senses what is going on in the bowel; inflammation does not play a role. It is possible to have IBS if you have been diagnosed with IBD. It is also possible to have just one or the other."
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