IBD and IBS - anyone diagnosed with both?

[Cat-a-Tonic]

I saw my GI yesterday, and although I'm still not officially diagnosed, he now tells me that he thinks I have both IBD and IBS. He feels that IBS explains some of my symptoms and IBD explains others. I'm not sure how I feel about this but I do know that I feel like it's lazy to tell an undiagnosed person that they have IBS when a more legitimate illness could explain things if they just looked a little harder for it. But, he is treating me for IBD - I'm currently on Asacol and in remission. I have mixed feelings on this whole thing and wanted to see who else has been diagnosed with both and if you agree with the dual diagnoses. Anyone, thoughts?

 

[chrisnsteph1022]

Yes. I was in remission for 6 years. During that time, I had some mild symptoms (diarrhea 3-4 times/day), but scopes showed a completely healthy colon. GI said it was IBS.

 

[StarGirrrrl]

Personally I think it's a load of rubbish. Drs do not know much about IBD and this is why they say you can have both. It may be in years to come it will be discovered that even with no visible active IBD a patient can experience flare-ups etc and this is the disease and not some functional disorder on top. Or that normal tests when confirmed with IBD do not automatically mean IBS- I mean, IBD often takes a long time to show up on tests, so you get dx'ed with IBS because nothing is there. Then IBD is confirmed, and it was IBD all along and never IBS. You get treated and are better, normal tests but still having problems. Then suddenly it's back to IBS, crazy!

I am no expert but merely by having IBD I think may be classed as giving you symptoms that are normal for you and the disease, but compared to a healthy person aren't. So why they say IBS when things look fine is mad. If you ask me the scopes/bloods/scans may be fine but due to the nature of IBD doesn't mean you will be symptom free, and if you do have symptoms in that situation you shouldn't be told IBS, because obviously if you have a disease that can make your intestines inflammed and ulcerated, things are not 100% healthy in there, even if it cannot be seen the IBD is still there.

I just think it's not understood as well as Drs like to think.

 

[Jennifer]

lol, my GI said something similar to me that I may have IBS or at least some form of short bowel syndrome (dude, I had less than a foot removed...). My symptoms don't follow either one so basically my GI is just saying, "I dunno," and wasting my time in the process. I hate knowing more than my doctors especially a "specialist." His specialty is bullshitting I tells ya! As mentioned, keep pressing for real answers if you KNOW that your symptoms are nothing like IBS and it simply does not make sense. You can tell when a doctor simply doesn't want to do the work. Don't let them get away with it.

 

[Kev]

I personally believe (and, I'm not a doctor, have no medical training or qualifications to try to back up my beliefs) that folks can AND do have both. One of the benefits of getting an IBD diagnosis is that means the doctors have found active inflammation or markers of it that allow them a clinical diagnosis. People who have gone thru the 'IBS' mystery illness get my sympathy. Simply, without positive, indisputable signs that there is inflammation, many docs will fallback on an IBS diagnosis because they haven't a clue what is going on. And, in hearing/experiencing what a friend of mine goes thru with their IBS, I'll take my IBD anyday. Reason? Well, I've a 'documented' acknowledged illness, I am given choices of meds to treat it or surgery to try to repair it, AND, (although many doctors still opine that food plays no part in it) I have been able, thru trial and error, to compile a list of my 'trigger' foods, and thus avoid them. People with IBS (or at least the folks I know with it or talked to) don't have those things going for them. Doctors dismiss them, there are no meds (since the doctors don't know what they're dealing with), surgery isn't an option, and trigger foods... that is a totally hit or miss proposition because what triggered an attack one day is perfectly safe to eat the next. I believe that folks with this ailment have weird fluucuations in their intestinal flora. Why? I dunno. Stress, hormonal changes, diet... I think these wild shifts in internal biotics is the culprit. It doesn't consist of anything that can damage the GI tract lining to leave a telltale sign (like Crohns does), or raise inflammatory markers, but it sure wreaks havoc.
It may be overpopulations of candida, or it may be bugs like h.pylori or c.difficile. or it may be any combination of natural internal biotics that simply rage out of whack from time to time. I know of one person in particular who finally found some relief from IBS by taking doses of acidophilous AND probiotics. It changed their nearly constant battle with IBS to one that only rears its ugly head on the odd occasion now. Anyway, the point I originally intended to make is that... I believe that many of us with confirmed cases of IBD dismiss the thought of IBS... maybe its a kneejerk reaction to before we were diagnosed and IBS was suggested (you remember, "its all in your head").. but that ALL of the symptoms we experience ALL of the times we experience them MAY not all be IBD.... but IBD compounded by occasional bouts of IBS, caused not by the same boogey man (eeer, bug) that gave us IBD, but by simple fluucuations in our intestinal flora... Remember, before we ever got ill with IBD, those occasional bouts of diarhea or whatever? Just because we have confirmed cases of IBD doesn't mean we can't also have IBS. Same as catching a cold doesn't mean we can't catch the flu too, or whatever. So, maybe, just maybe,, if by some long shot I'm right about this, it makes a lot of sense to watch for candida... take vitamins, acidophilous, probiotics, prebiotics, etc., etc..

 

[Mark74]

I was dx first with ibs and then ibd for yea later

 

[Leebie3]

extremely well said Kev! You have a way with words.

I believe I have both.. They know that IBS makes the nerve endings in your gut hypersensitive.. I believe that is why when I only have mild inflammation it's landed me in hospital with the pain. I HATED that I was diagnosed with a 'mystery' illness that was most probably in my head and do feel vindicated that there is now something else visible so they believe me.. I am lucky to have a GP who is very aware and has told me that IBS is a genuine illness that needs to be managed and that it has very real pain. They are still learning exactly what it is... maybe it is some microscopic inflammation, maybe it is a fault in the nerves.. who knows. I DO know that it is very real. I do know that it does cause a LOT of pain not just physically. I do think that sometimes we forget that we are still susceptible to everyday things.. and not everything we experience is because of the IBD. Does that make any sense?

 

[kllyeve]

I also have Crohn's and IBS. I did get the IBS diagnosis first and just thought my increasing pain and constipation were from that. Now I know I have both.

I am trying the FODMAP diet. It basically says that forms of sugar ferment inside and cause alot of the symptoms of IBS. So reducing all forms of sugars will help avoid symptoms. It also explains why some people can never identify trigger food as it is not just one food but symptoms appear once a threshold level of sugar is reached. This could be casued by a different combination of foods every day.

I am having great success reducing some of my symptoms with it. My Gi recommend this program to all her IBS patients.

 

[David]

I had a debate with a doctor recently about IBS versus IBD. At one point he said, "They ARE starting to understand what causes IBS! In fact, a recent study found low levels of inflammation in many people with IBS".

"So they have inflamed bowels?"

"Yes"

"Remind me what IBD is?"

"Inflammatory Bowel Disease"

"So to have IBD you have an inflamed bowel"

"Correct"

"So those people with 'IBS' that have inflamed bowels actually have IBD?"

"No, they have IBS with inflammation."

I stopped there.

Could someone have BOTH? I admit I feel IBS is like a fibromyalgia where the doctor just can't figure out the real cause and wants to give the symptoms a name. So if someone has IBD and has symptoms that are caused by an unrelated disorder that isn't fully understood or properly diagnosed, I guess it's possible to have "IBS" and IBD at the same time. But for the love of god, that should only be used after every test in the book is conducted and colleagues are consulted. IBS should be a diagnosis of exclusion not a, "I have 10 people in the waiting room and good seats at the game tonight you have IBS see ya" type diagnosis.

 

[Leebie3]

PMSL!!!!!!!!!!!!!!!!! That's great David! :-D thanks for the laugh! :-D

 

[Cat-a-Tonic]

David, I think you hit the nail on the head. My GI is very "by the book" and I think part of this IBS thing is that I don't have all the "textbook" IBD symptoms (I don't get fevers, my CRP is usually not raised, etc). And when I got into remission, I still had some lingering symptoms like crampy pains ocassionally. I feel like remission is a long process, both to get into and get out of - you don't hit remission nor leave remission overnight. It took months for me to go from actively having flares to feeling really well consistently so I think it was just a process of me getting into remission, not necessarily IBS, that was causing my lingering symptoms. But my GI seems to feel differently and he thinks I was in full remission much sooner than I think I was, so he's attributing those symptoms to IBS.

I think another problem is, like you said, I haven't had every test in the book done, not yet. Remission is the culprit there - my GI feels (and I agree on this one) that since I'm now in remission, it's silly to do any further testing. If nothing was showing up on my tests when I was ill all the time, the odds of anything showing up on a test when I'm in remission is logically much lower. So I still haven't had a few like barium swallow/barium enema, and MR-E or CT-E (I had a general abdominal CT, not a CT-enterography, and I had an MRI of my liver but not MR-enterography). So a bit of a catch-22 there, don't want to leave remission obviously, but can't do more tests in remission. It's not that my GI is trying to rush me or be lazy per se (although like you I do feel IBS is a lazy diagnosis) but he can't do more tests right now and has different thoughts on remission than I do is what it boils down to.

 

[Beach]

Officially, I am diagnosed with both. A few doctors agreeded I had an IBD - microscopic colitis. One relabled me to IBS though after simply mentioning only "little old ladies" have MC. I'm a guy.

After doing a bit of research on IBS I did get the opinion that the diagnosis is given after other conditions are ruled out. Basically it seemed to me a confirmation by a doctor that we know you have problem but are not sure what it is. Used to joke that the acronym of GOK could equally be used. (God Only Knows)

 

[David]

Officially, I am diagnosed with both. A few doctors agreeded I had an IBD - microscopic colitis. One relabled me to IBS though after simply mentioning only "little old ladies" have MC. I'm a guy.

I'm glad to know I only have IBS instead of Lymphocytic Colitis since I'm not a little old lady.

How many others have "IBS" out there because they don't fit the outdated disease information.

 

[Cat-a-Tonic]

Beach, I know that David also has MC - I remember him talking about the "only old ladies have it" thing too. My GI has said that UC has been ruled out for me as I don't usually bleed, so he thinks that my IBD is likely either Crohn's or MC (I'm a female in my early 30s so I fit the lady part but not the old part of MC). I've seen a few people on the forum lately with MC so it seems to be becoming more prevalent (although I don't know many old ladies who know how to use a computer, so I don't know if it's actually more prevalent among young people/males or not).

Edited to add: Whoops, David already found this post as I was typing mine! You're too quick for me, you little old lady you!

 

[Entchen]

Clearly, the arthritis from old age hasn't reached his womanly fingers quite yet, eh, Cat.

The typecasting must be SO annoying.

Then again, not fitting the mold helped me argue against the likelihood of my having a hemoglobinopathy like sickle cell anemia, lolz. Poor blood cells were misshapen because I was so anemic, and it was thought that maybe I had a serious blood disease (2+ tests suggested same). I pointed out that the likelihood was somewhere between "ridiculously low" and "don't think so, Bill.*"

*With apologies to any Red Green fans.

 

[Beach]

Thanks David and Cat,

I guess I should have thanked the doctor for noticing I wasn't an old lady. :ybiggrin: As ruff as this disease can be to deal with, I certainly can feel very old at times.

When I was diagnosed with microscopic colitis I recall the disease was newly discovered. As far as I know there wasn't a break down of different types of MC. I remember too the original physician that gave the diagnosis smirked saying along the lines that a doctor from New York probably made a million dollars inventing the condition. For what ever reason he didn't appear to think much of MC.

I suppose in defense of the doctor that made the diagnosis of IBS from MC, at that time he had performed a colon GI exam on me. I don't know what he saw with the scope, or the later sample lab report, but I do remember I was playing with my diet by this time. I had begun a food journal, keeping track of everything eaten, recording how I felt. And - if I remember correctly - it was not long after this doctor visit that I found a very limited diet that made me well. I stopped having diarrhea. Possibly the inflammation had decreased enough that by the examination colon inflammation was not as pronounced. This is just a guess, but if that was the case IBS would have been the call to make.

Eventually I opened my diet back up, making it less limited, and over time lost being well. I've been working ever since to find a new, wider diet that makes me well once again. I didn't want to do it, but of late I'm back to writing a food journal and eating the same foods over and over. It seems to be working - very slowly.

 

[stacichristine]

An ER dr told a friend of mine that IBS is a "catchall" that drs tell you that you have, when they have no clue. Or care enough to take the time to get to the "bottom" of your issues!

 

[HBLO]

I was diagnosed with Crohn's two years ago. I lost 40 lbs in one month and basically lived on the toilet. I have taken Entocort and Ascol to help reduced the symptoms. Currently, I'm just on Ascol but have been experiencing some symptoms again (cramping, pain, diarrhea w/ blood, nausea.) I have insurance through the state and have not been able to see my normal doctor for treatment. I've been two two different GI doctors so far one did a colonoscopy (a little inflammed) but nothing to be concerned about so he put me on IBS meds (did NOT help) had a blood test and my liver enyzme were high so went to a GI/Liver speacialist did a barium and everything came back normal. Recently got a letter in the mail telling me to stop taking Asacol because I don't have an IBD just IBS. How the heck do these people have the right to take away a diagnoses? I literally feel like breaking down!! Is it all in my head?

 

[2much]

Thanks for starting this thread....this has been an ongoing battle for with me with my GI. Right now I am frustrated by being told that my symptoms are caused by IBS but my CRP is elevated at 25....my highest....my last colonoscopy back in January reported small ulcerations with erythemia around the anastamosis site. Just had a SMFT and it showed edema, inflammation and boggy tissue. My GI stated he wasn't too impressed with the findings and said this still looks like IBS. Symptoms wise I have RLQ pain a lot....excessive joint pain and alternate between diarrhea and constipation.
This is quite bothersome to me as it tells me that unless I have serious symptoms or get to a place where I am really sick and unable to do my life I am going to be written off. It seems to me that this is the time to step in and try and stop or slow the progression of the disease. I was diagnosed with IBS for over 20 years before finding out I had Crohn's. I found out by accident when I had a colonscopy after 1 week of bleeding rectally. I was found to have severe inflammation and a strictured TE and ulcerated cecum. When I had surgery..the surgeon told my partner I had been sick a long time. So, I am one of the folks who also believes that IBS is used as a brush off and the consequences can be very painful and dangerous if we don't have the guts to stand up to our providers. I am not sure what to do about this even though I speak up and challenge my GI. I can go to another provider but that is exhausting. So...that is my story...thanks for listening and again thanks for starting this thread...I think it is a very important topic of conversation