# IBS vs. Colitis?



## Epona (Jul 27, 2000)

I had a colonoscopy last week, I have had IBS-D most of my life, this was the third colonoscopy I've had in about 12 years.My symptoms have worsened and gotten much more painful over the last year and a half, which has prompted my doctor, and myself included, to think I may have colitis rather than IBS. I have a sister and nephew with colitis, so there is a strong family history of it. Other family members with IBS/colitis issues too.Anyway, has anyone initially been diagnosed with IBS, to then discover later on that they have colitis? How did your symptoms change or differ? We are still waiting on the biopsy results, until then I am not sure yet what I have going on. Altho during the colonoscopy it was discovered that I also have diverticulosis.


----------



## BQ (May 22, 2000)

I was told at one time that I MAY have had colitis but that I still had IBS as well. So I know there is the possibility that one can have both simultaneously.Diver ??? Yeah that too,... one can have that AND IBS. One can have IBS AND loads of other GI stuff unfortunately. But there are differing treatments that could calm the diver or colitis down.. so here's hoping your results are definitive. Keep us posted.


----------



## overitnow (Nov 25, 2001)

This is one reason why I think that just drying up the colon to address IBS-D may well not be enough of a response. While the D is controlled, the underlying condition goes on, unabated. At this point, I honestly don't know what I have/had. The flavonoids I take seem to have anti-inflammatory properties, I have posed a few times about a study I found that suggested that anti-cholesterol meds that controlled blood platelet activity which caused cholesterol buildups should control a similar platelet activity that causes IBD, which the flavonoids do, and inflammation is not unknown after a lifetime of smoking. It is very possible that I had a case of microscopic inflammation/colitis. It's an approach that might well be worth trying. Mark


----------



## jmc09 (Oct 5, 2009)

I too was told I had non specific colitis at the beginning of my problems due to the severe Diarrhoea and weight loss I suffered from and my symptoms were managed well for a while while using Colitis specific drugs,Salazopyrin(Sulphasalazine) and Mesalazine for a short period also.But having been a member on here for a while I'm not sure whether I actually had colitis at all.I did have some slight inflammation at first but that hasnt been the case on the 3 colonoscopies I've had over the past 5 years.I'm convinced that there is a lot of confusion between the two diseases as they show very similar symptoms.But it also seems that IBS sufferers seem to have,or appear to have, one or both of the illnesses at some time in their lives.


----------



## Kathleen M. (Nov 16, 1999)

Well you can have acute colitis, not all colitis is ulcerative colitis or a chronic condition. Some people may get inflammation from the colonoscopy prep itself and that is still labeled as "colitis" because all that means is inflammation of any kind in the colon.Now if you do have a chronic disease like ulcerative colitis you can still have IBS just like you can have IBS and anything that causes any case of acute colitis (any infection).The autoimmune disease Ulcerative Colitis is just one kind of colitis. If you don't have evidence of an ongoing chronic inflammation in the colon I would assume that whatever it was happened to be one of the short term things and they just happened to catch it while it was going on.Now you can have Ulcerative Colitis and be one of the lucky ones that spends most of your time in remission so you may need to work with the doctor to make sure they get a colonoscopy WHILE the diarrhea is bloody, not scheduled so far in advance that it may resolve before they get a look-see. A colon in complete remission will look normal (and the symptoms when the colon looks normal and the blood tests are normal then is from a functional problem-IBS)


----------



## jmc09 (Oct 5, 2009)

As crazy as it may sound and based on my own experiences I would prefer to have Colitis rather than IBS as it was much,much more easy to manage and the drugs for it actually seemed to work.This is unlike my experience of IBS where drugs rarely seem to work and it's a much more difficult condition to manage.


----------



## Epona (Jul 27, 2000)

That is what my doctor told me, with colitis at least there are meds we could try, with IBS there is not (none have helped me so far, anyway). I met with my doctor today, results are that I have severe IBS. And the diverticulosis.So, now back to the social security disability waiting game, I applied for it back in summer of 2009, been denied once, and my attorney appealed..... I also have two old herniated disks in my back that have now dissolved leaving no disks and a mess of arthritis and back troubles.....so between the severe IBS and the back troubles, I'm praying disability comes thru.


----------



## BQ (May 22, 2000)

So sorry....All things crossed for you Epona!


----------



## Epona (Jul 27, 2000)

Thanks! I'm hanging in there, it's nice to have a place like this to discuss it all, and to just vent when we need to.


----------



## jmc09 (Oct 5, 2009)

Epona,I feel sorry for you living in a country with such a crazy healthcare system.Let's hope your current government manages to achieve even a little improvement in your healthcare policies before it gets beaten down by rich,mainly White old men who make a fortune out of normal peoples suffering like yourself.After all if they want treatment they are so wealthy that nothing is a problem for them.


----------



## Patman75 (Mar 9, 2008)

You might want to look up Elizabeth, IBD/IBS Author, moderator of the IBD forum. She has both UC and IBS.When I was dianosed with UC is was an automatic you have UC as I was waking up from the colonoscopy. No waiting for test results. Goock luck on everything.


----------



## Slade (Dec 17, 2008)

> As crazy as it may sound and based on my own experiences I would prefer to have Colitis rather than IBS as it was much,much more easy to manage and the drugs for it actually seemed to work.This is unlike my experience of IBS where drugs rarely seem to work and it's a much more difficult condition to manage.


That's indeed crazy talk. You prefer to have horrible UC and take drugs that totaly destroy your body? Unbelievable...


----------



## BQ (May 22, 2000)

She didn't say UC ...she said colitis.... two different things Slade.


----------



## jmc09 (Oct 5, 2009)

Slade,is it crazy to take drugs that allow you to live a relatively normal life,job and all versus tablets that may or may not work and not being able to work?I preferred the first option.And yes I said Colitis,non specific not Ulcerative.


----------



## Kathleen M. (Nov 16, 1999)

Unfortunately colitis of any kind is not always easily controlled with any of the available medications and most of them do have serious side effects. Between the side effects and the complications of inflammatory disease (of the chronic kind) you can get into life-threatening territory rather than the "just makes you wish you would die" obnoxiousness of IBS.Additionally chronic inflammation of the colon may set off IBS so even if you "only" have colitis you may end up with IBS anyway.I know it seems it should be better to have a disease with a long list of medications, but if none of them work for you, or cause severe side effects then it really isn't quite that rosy a picture as it would seem at first glance. However a lot of people would rather have something that is serious as long as they feel there is a clear treatment plan.No pill works for everyone with any disease, and there is always some people who will find no treatment ever really does much good.It is like my asthma and allergies. I can breathe, or I can feel better, I cannot have both. The treatment for the allergies is almost as bad as the allergies in how bad it makes me feel. However, I prefer breathing rather than dying so I put up with the complications. I feel better when I don't treat the allergies/asthma, but only until my lungs shut down, and I can't predict how many weeks or months of good I will have before something sets them off.


----------



## petra (Feb 2, 2009)

I'm with you on this JMC-at first it was thought that I had non-specific colitis and was given asacol and questran. I think they helped a bit but I was probably too impatient and thought they didn't. Now my diagnosis is thought to be more IBS and so I don't have any treatment options (from medics) other than imodium and buscopan and seroxat. Nothing to treat the condition-only symptoms. I would like to try asacol and questran again but they won't give it to me for ??? IBS. I know someone with really severe crohns who has become dramatically better since starting treatment-no symptoms at all. How I would like that even for a short period-just to be normal for a while. So many things I would like to do. Would just like a brief remission-how good that would be.


----------



## Kathleen M. (Nov 16, 1999)

If you think the questran might have helped at all it is sometimes prescribed for IBS-D. so it may be worth having that discussion.And if you are lucky and you have an Inflamatory Bowel disease the pills work. There are plenty of people over on our IBD forum that do not get relief and end up with lots of surgeries that end up causing other problems and cannot work.The IBDs are on the list of conditions that are regularly disabling. So it really isn't true that everyone with them goes easily into remission and works and has a wonderful life. A lot of them can't work and are disability because they can't get it under control. Remember lots of IBSers do find something that works for them. It isn't true that nothing ever works for IBS. Lots of things do work, but the path to finding what works for you isn't as clear (and may not be handed to you by your MD).


----------



## IBD/IBS Author (May 24, 2007)

First, let me say that I can hear and understand both sides of this discussion. Second, I have been Dx'd with both IBD - microscopic colitis (MC) first, and then ulcerative colitis as well as IBS. Having lived with both IBD and IBS for more than 10 years I can tell you that neither is a picnic, nor is there a quick fix for the IBD. If you've read my book, telling of how I helped get both under control, then you know what I'm talking about and that my battle continues every day. If you haven't read my book, then here's as quick a primer as I can give. When first Dx'd with IBS I was 15. I lived with gas and bloating and nausea, took metamucil, ended up in the ER after having a very bad reaction to an anti-nausea medication, and just went on with my life - that's what my doctors told me to do, so that's what I did. In 1997 I started having more severe problems - loss of appetite, 20-30 D BMs/day, severe weight loss (I'm 5'7" and weighed about 95 lbs.), had arthritis, hair loss, etc. A scope came back normal, but the biopsies showed inflammation so I was Dx'd with MC. I was given Asacol and a few other meds. to try. My downward spiral continued, my D BM's continued, I quit my job, changed my whole lifestyle, had to severely change my diet, and still in 1998 I was given a UC Dx when the blood and mucus showed more inflammation. I went through a rigorous Elimination diet - something that all people with gut issues would benefit from much more than drugs if they'd just be willing to do it - I learned relaxation techniques, coping techniques, yoga, meditation. I _changed_ my entire life and lifestyle. Today I am also gluten-free (now in my 7th month of this), and just today I got back from seeing my doctor who because of the gluten issue now thinks that on top of everything else I've mentioned I may have leaky gut. So, onto another elimination diet I go, try a few new supplements, and we'll see where I am. I am living life again because of all of my hard work, really learning to understand my body, the gut, and how to care for it. But I work at this every single day.I'm sorry for everyone who has gut issues, truly I am. But in all honestly I get so tired of people wishing they had something else because then there would be a pill, or a cure, or something else they could do for it. You know what, if all you have is IBS, then be glad. Be glad that you don't have IBD, which is an auto-immune disease that lead to other autor-immune diseases like lupus, rheumatoid arthritis, multiple sclerosis, etc. I am not downplaying the severity of IBS symptoms. I have lived with them for most of my life, too. But, honestly, people, if you don't have a doctor who is helpful or takes you seriously then find one. If you don't like your GI then look for a doctor of Osteopathy, or an Integrative medicine physician (think Andrew Weil). Become proactive in your health. Learn what you can and ask your doctor questions. Get quality stool tests from places like Genova Labs, try an Elimination diet, even though it is hard and somewhat inconvenient. Do not wish to have IBD because there are more approved drugs for it. IBD SUCKS! And once you have it it doesn't go away, it is an auto-immune disease. There is no cure. Many of the meds. we take to treat it make us sicker, or give us other illnesses. The acronyms for IBS and IBD are similar. Even some of the symptoms are similar. And some of the treatments may overlap. But be careful what you wish for, because IBD is NOT IBS.If we're wishing, then I wish all I had was IBS.


----------



## Slade (Dec 17, 2008)

Elizabeth's and Kathleen's posts say it all. I live with my IBS in constant fear of developing IBD. I hope and I pray every day that this never happens! My mother always says: Be careful what you wish for!


----------



## Jeffrey Roberts (Apr 15, 1987)

I have to admit that the term "colitis" confuses me. I wish doctors would be more specific when they use that word. We should all be in the habit of challenging our doctors as to what they mean by colitis. Perhaps ask them if they can be more specific as to what they are thinking?I was scoped many years ago during a significant bout of food poisoning where my GI doctor saw ulcers in my colon and thought perhaps it may be ulcerative colitis, although he had diagnosed IBS many years earlier. The colitis was actually caused by the bacteria campylobacter, which fortunately resolved after antibiotics. Though, for a week I was terrified that I had ulcerative colitis until further cultures came back with the correct diagnosis.Several years later I felt that I had another serious bacteria infection. Scoping revealed ulcerated inflammation in my colon, but this time after a diagnosis of IBS for over 20 years, I was also diagnosed with Crohn's disease. My Crohn's responded very quickly to medication. I was actually hoping that my new Crohn's diagnosis and new medication would cure all my digestive system woes. Unfortunately it didn't. While the Crohn's has been under control for many years, IBS continues to cause a great deal of discomfort and quality of life issues.Recently my Crohn's has flared again. The impact to my life and well being has been much more significant this time and it doesn't appear that I am going to bounce back as quickly as the last time. With IBS, you kind of know where you are, what works and what doesn't work. It isn't easy, but it does seem to wax and wane. It's hard to know where the end is with a Crohn's or Ulcerative Colitis flare-up is. It seems you have to work a lot harder to get these under control.For those unsure, IBS *does not* eventually lead to a diagnosis of Crohn's Disease or Ulcerative Colitis or predispose you to anything else, for that matter. Generally, if IBS has been diagnosed correctly and if it is still apparent after 2 years it will be the same diagnosis for the next 10, 20, 30 years... etc.... It is however, always possible to have multiple diseases which overlap in symptoms.Jeff


----------



## Jeffrey Roberts (Apr 15, 1987)

Just realized that I didn't answer your original question... how did my symptoms change from IBS to Crohn's?For me, because my Crohn's appears to be in my descending colon, I had inflammation in my rectum which led to a mucous discharge even with the passage of gas. I couldn't really tell when I was going to pass gas or pass stool. I felt almost incontinent at times. I also had heightened urgency to have a bowel movement. I had a _bubbly, gassy_ noise in my gut - which usually led to an urgent bowel movement. I also had a dull ache in my lower left side that was present even after a bowel movement. This is quite different from my usual IBS symptom where a bowel movement will temporarily relieve an intense IBS knife-like pain.Jeff


----------



## Epona (Jul 27, 2000)

That is one of the puzzling symptoms for me......even after a bowel movement, and my IBS has let up, I do still have persistent abdominal pain. Sometimes one sided, or sometimes all over.


----------



## Jeffrey Roberts (Apr 15, 1987)

I was convinced that the constant pain was a sure sign of inflammation when it started last year, but it took 2 scopes over the year to finally see the most recent flare-up. Be patient and be persistent with your doctor about your symptoms.Jeff


----------



## Epona (Jul 27, 2000)

Thanks Jeff! I'm lucky in that I have a really wonderful and caring doctor.


----------



## Kathleen M. (Nov 16, 1999)

When my IBS was bad I really had at least some pain all the time. It is not true that IBS pain has to go away completely for hours at a time. Medications could take the edge off it, but it was there all the time for months on end.The most constant was the overall colon tenderness (any movement made it worse as did anything where I tightened my abdominal wall or any clothes that were too tight).I also had other pains that tended to be worse from eating (so in addition to movement). Now it didn't usually wake me up in the night, but that isn't a sure sign it has to be something other than IBS. IBSers do have that, it is just other diseases cause it more often.


----------



## Jeffrey Roberts (Apr 15, 1987)

Good point Kathleen. Constant pain does not necessarily mean that something else is present besides IBS.


----------



## Gmonkey (Dec 4, 2009)

Very interesting as always however I wouldnt swap my IBS for IBD. Even though I have really bad IBS c. I still think that they will find the cause of IBS and hopefully it will be something they can fix. Or maybe its something they cant and but a proper diagnosis and an explanation would be better than this uncertainty.I really miss my old life. I got food poisoning at age 30 and have declined to a shadow of my former self over the last 5 years. Without any real answers despite colonoscopy and barium enema.Although the IBS itself may not be a direct cause of more serious health problems the effect of many years of constipation will take its toll on some area of my body. I cant speak for the IBS d people but the fatigue, mood swings and muscle issues you get with IBS c cant be good for your body long term.Im not in any pain other than gas/stool cramps. The people who are in constant pain probably have something other than IBS.They didnt discover HPylori until the 80's and until recently they thought that IBS was all in our heads. So that gives me hope. I have to believe that they will find out what causes it one day and i just hope that I will be around to buy that Dr a Drink.Its the not knowing and wondering that makes IBS so bad. I think that is why its tempting for some to wish for IBD. I dont share that view. Funny thing about my Doctors is that even their attempts to treat my symptoms have failed. That is how little they know about IBS. But lets face it. There are experts working at the sharp end of testing and then they let the rest of them catch up once there is a breakthrough. So not to worry if like most of us you had a doctor that didnt have a clue what actually caused your condition but was clever enough to dance around your symptoms and to send you home non the wiser.Thats the deal with IBS.


----------



## jmc09 (Oct 5, 2009)

I think people have misconstrued what I said when I said that I'd have preferred to have MY version of IBD where the medications worked much better than any IBS medication.I had an inflammation that took ages to find and I had to endure a 3 week hospital stay with no drugs to actually find that inflammation so it was actually a quite minor IBD just very,very troublesome,constant Diarrhoea and severe weight loss.I put weight back on as soon as the proper medication was issued so not a major issue like some people on here.So remember that IBD can also be a bit different for everybody just like IBS usually is.


----------



## Kathleen M. (Nov 16, 1999)

Even when mild and easily controlled IBD can over the long term (either from the medications or because it can be progressive) can end up in a very serious place. If you had an IBD and it went away after a short period of time and never came back you are extremely lucky. Most of those end up being a life long struggle that often escapes the control of the medications and all too often causes the death of the person. Several of the people on this board have died from the complications of IBD. IBS just makes a few of us occasionally wish were were dead.Also just because you didn't easily find a solution for the IBS doesn't mean that no one ever does. Some people find very effective control for it. We have a lot of success stories. It is not true that no one ever finds anything that helps.That is why even if you happen to be one of the lucky ones with IBD, at least for a little while, I still wouldn't wish that disease on anyone. There is no sure bet it will stay mild and easily controlled, nor is there any way to ensure that after decades of medication you won't end up with severe side effects from taking them.I understand the "I want something with a quick fix", unfortunately most of the quick fixes have a price on them that at least a few people will pay dearly for. Suppressing the immune system takes powerful medications and they eventually do take a toll even if it takes awhile for the side effects to show up.It would be lovely if every health problem had one and only one easy answer that worked for every person. So far no luck on any of them. You may get lucky with this one or that one, but in those cases you are lucky, and other people have immense problems. After all there is a reason IBD's are on the list of conditions that typically make someone unable to work and IBS is not.


----------



## Epona (Jul 27, 2000)

I am still wondering WHY IBD's are on the list of conditions that typically make someone unable to work and IBS is not.I have a nephew with ulcerative colitis (he had surgery) and a sister with colitis. My symptoms and health issues have been far more disabling than their's has..... they are able to work, go out and eat, and not worry too much about having severe diarrrhea and accidents. Makes me wonder if it is possible that a poorly-done colonoscopy can miss things?? I was not at all impressed with the new GI doc I had......


----------



## Patman75 (Mar 9, 2008)

Kathleen M. said:


> Even when mild and easily controlled IBD can over the long term (either from the medications or because it can be progressive) can end up in a very serious place. If you had an IBD and it went away after a short period of time and never came back you are extremely lucky. Most of those end up being a life long struggle that often escapes the control of the medications and all too often causes the death of the person. Several of the people on this board have died from the complications of IBD. IBS just makes a few of us occasionally wish were were dead.Also just because you didn't easily find a solution for the IBS doesn't mean that no one ever does. Some people find very effective control for it. We have a lot of success stories. It is not true that no one ever finds anything that helps.That is why even if you happen to be one of the lucky ones with IBD, at least for a little while, I still wouldn't wish that disease on anyone. There is no sure bet it will stay mild and easily controlled, nor is there any way to ensure that after decades of medication you won't end up with severe side effects from taking them.I understand the "I want something with a quick fix", unfortunately most of the quick fixes have a price on them that at least a few people will pay dearly for. Suppressing the immune system takes powerful medications and they eventually do take a toll even if it takes awhile for the side effects to show up.It would be lovely if every health problem had one and only one easy answer that worked for every person. So far no luck on any of them. You may get lucky with this one or that one, but in those cases you are lucky, and other people have immense problems. After all there is a reason IBD's are on the list of conditions that typically make someone unable to work and IBS is not.


Well stated post.Even with my UC under control these days with "maintence medication", diet and supplements I would not wish this on anyone. IBS sucks too and I'm not down playing IBS, but trust me you want no part of IBD. If maintence meds dont work the next level of medication has serious side affects and if those don't work the next level has even more risk. I have meet people as CCFA supports groups in VERY VERY rough shape, it makes my IBD look like a slight case of food poisoning.


----------



## Slade (Dec 17, 2008)

The simple fact that CD and UC are listed under conditions that cause disability is scary enough. If you don't get disabled from the disease symptoms and complications alone - corticosteroids will do the job. What scares me even more is the quick reading of our local IBD forums and blogs. It shows that most of the IBD cases and symptoms start gradually from not very disturbing and develop in terms of years, not months! The people suffer and sometimes become desperate before they get proper diagnosis - until then "it's just IBS"... I hope and I pray that IBS is IBS and does not turn into IBD but as it is written everywhere - the symptoms overlap and in a good number of cases.. well IBS eventually turns into a living nightmare.


----------



## Kathleen M. (Nov 16, 1999)

One thing to remember is IBS is very common. IBD's are rare in comparison.So if you have typical IBS symptoms the most likely thing is that you just have IBS. IBS does not develop into IBD.Many people with the "years to diagnosis" often had a few atypical symptoms. Some minor abnormality in the colon biopsies, weight loss issues, some minor funkiness in the blood work, blood in the stools, etc. So often there are some signs that you need to be watched more closely (although even people with some minor abnormalities don't ever develop IBD).And some people do have a combination of functional and organic disease and so that can complicate diagnosing things.So I would try to avoid dwelling on the fear that you may be one of the few rather than one of the many. Keep an eye out for IBD symptoms (obviously bloody stools, so don't spend hours looking for something in there you can freak yourself out about, or you lose a bunch of weight when you are eating a diet that normally maintains your weight) and I would get regular checkups with at least a complete blood count so if you are someone that just had mild problems at first (or have both) you catch things when they transition to a more severe disease.And lots of people with IBD have it come on sudden and strong and when they first have GI symptoms it is clear it isn't IBS. It is not true all of them had years of an IBS diagnosis before it got bad.


----------



## petra (Feb 2, 2009)

I think what one or two of us have tried to say (maybe not very well) is that at the back of our minds we worry that we might have IBD and not IBS. If all that has been tried is treatments for IBS then we won't have got very far. If the diagnosis is really something different then there is at least some hope that something might improve and that in itself offers hope. I was orginally diagnosed with IBD but then it got changed to IBS although I didn't have anymore biopsies or tests -just because I didn't respond initally to asacol. Since then I've wanted to give it another chance and have just undergone another biopsy20years later. I'm still waiting for those test results-if they are negative then I'm no further ahead but if they are positive then maybe I'll be offered some different treatment to try.


----------



## Epona (Jul 27, 2000)

I guess I am not sure if I trust this new GI doc I have...... with my strong family history of colitis, I just sort of wonder.My last colonoscopy with another GI doc showed inflammation, that was a few years ago....... my symptoms are worse now.....so, well, due to family members with colitis I guess that was another reason my family doctor wondered if I may have colitis.And while some people have been successful at controlling their IBS at times.... I have not. I am 53 and I've had this all my life, and it seems to only get worse as I get older. I'm not giving up tho!


----------



## Kathleen M. (Nov 16, 1999)

If symptoms are a lot worse, particularly if you are seeing blood or losing weight for no reason at all it is probably worth getting rechecked.Some colonoscopy preps can cause inflammation in completely healthy people so if that was a one off it may not mean much.


----------



## Slade (Dec 17, 2008)

Kathleen M. said:


> One thing to remember is IBS is very common. IBD's are rare in comparison.So if you have typical IBS symptoms the most likely thing is that you just have IBS. IBS does not develop into IBD.Many people with the "years to diagnosis" often had a few atypical symptoms. Some minor abnormality in the colon biopsies, weight loss issues, some minor funkiness in the blood work, blood in the stools, etc. So often there are some signs that you need to be watched more closely (although even people with some minor abnormalities don't ever develop IBD).And some people do have a combination of functional and organic disease and so that can complicate diagnosing things.*So I would try to avoid dwelling on the fear that you may be one of the few rather than one of the many.* Keep an eye out for IBD symptoms (obviously bloody stools, so don't spend hours looking for something in there you can freak yourself out about, or you lose a bunch of weight when you are eating a diet that normally maintains your weight) and I would get regular checkups with at least a complete blood count so if you are someone that just had mild problems at first (or have both) you catch things when they transition to a more severe disease.And lots of people with IBD have it come on sudden and strong and when they first have GI symptoms it is clear it isn't IBS. It is not true all of them had years of an IBS diagnosis before it got bad.


I try to avoid thinking that I might be one of the few but I can't. It's strong and I'm kind of a person who easily gets obsessed with bad thoughts. Not that there is something wrong with my bloodwork, weight, etc. right now but I fear that things might go wrong any minute and that would completely destroy my life. What bothers me most is that the etiology and mechanisms that unlock both groups of conditions are not known and that freaks me out. I'm a biologist like Kathleen (only not that high level) and I become really nervous when some biological process that concerns me is such a black box.I try not to think that genetics has much to do with this but my mother and her father have always had stomach and bowel problems. My mother was diagnosed with H. pylori induced gastritis after I don't know - 15 or more years of suffering without cure. She was also diagnosed with "colitis" in the past but wasn't prescribed any meds - only diet. My wife also has IBS and I'm worried sick when my 3y old child has some stomach pain or diarrhea.


----------



## Kathleen M. (Nov 16, 1999)

One thing to remember (depending on how old the diagnosis is) that IBS was called spastic colitis for a very long time.They dropped that name because you don't see the things usually associated with colitis and if they never gave her any medications for it and just prescribed a diet I would suspect they were using the older term for IBS rather than just let someone with an IBD go untreated.


----------



## Slade (Dec 17, 2008)

Yes they used spastic colitis for IBS or just colitis. I gues my mother doesn't have IBD but I suspect some genetic traits are connected with most digestive disorders.


----------



## Patman75 (Mar 9, 2008)

If you are really worried about being the 1% with IBD insteed of the 10-20% of americans with IBS upi can do things to improve your health. Luckly many of the self help food programs are very similar between IBD & IBS. Removing unnatural foods and toxins from your life will reduce the burden on your immune system.







I would not hold out hope that the modern medicine will come up with anything anytime soon.


----------



## Kathleen M. (Nov 16, 1999)

Well genetics are involved in a lot of disorders but for most things it makes you either a little more likely or a little less likely to get something.People who get IBD's generally have genes for the immune system that make them a little more prone to get autoimmune diseases and that is why they often have more than one. Once you are prone to them it doesn't mean you get just one and that "uses up" all the tendency.IBS also seems to have some genetics that could make you a little more prone or a little less prone but the twin studies show (how many identical twins are there with only one person having the disease vs always are the exact same) that environment plays a big role.One known environmental factor is GI infections, so another reason to wash your hands often to prevent GI viruses and using good food preparation techniques.


----------



## DietMan (Jan 15, 2010)

Does anyone have any idea what the percentage of the IBD population is mis-diagnosed with UC when infact they have Chron's? I am still struggling with coming to terms with this idea, which may not be too important if treatments are nearly the same, but its still a question. The same thing goes for UC patients. Does anyone have an idea about the percentage of UC patients who previously were diagnosed with IBS?This is fascinating to me because my uncle is someone who was diagnosed origianlly with UC by Dr. Crohn himself, and not until surgery was it discovered that it was Crohn's.


----------



## Kathleen M. (Nov 16, 1999)

http://www.ncbi.nlm.nih.gov/pubmed/1109533...p;ordinalpos=23119 patients with IBD in the colon.43% of the initially diagnosed with UC were changed to CD or IC17% of the initially diagnosed with CD were changed to UC or IC(UC Ulcerative ColitisCD Crohn's DiseaseIC indeterminate colitis)Not sure about UC that looks like IBS (or someone that had functional bowel problems before the UC developed).I do know that at least 95% of people with typical IBS will have nothing else found even with a complete battery of tests. So even if some UC start out as IBS the vast majority of people with typical IBS do not have anything else and don't develop anything else.Some of the IBD's can sometimes go in and out of remission which complicates diagnosis and a lot of people have both functional and inflammatory processes going on.IBS is also very common so a lot of people may be suspected of having IBS before tests come in and show other things going on. I don't know if you include those in the misdiagnosed or not.


----------



## IBD/IBS Author (May 24, 2007)

Read this from the Crohn's and Colitis Foundation of America about the difference between IBD and IBS - http://www.ccfa.org/about/news/ibsoribdAnd also remember that IBS- Irritable Bowel Syndrome - is a diagnosis of exclusion. Meaning, your doctor should/will give an IBS diagnosis only when all blood work, scopes, etc. have been done and show NO signs or symptoms of another GI illness. Also remember, that inflammation is not a symptom of IBS. So, if you are being told that inflammation has been found in your colon then you need to ask follow-up questions of your doctor and the pathology report that showed the inflammation. Understand what your doctor is telling you about your body. Don't just get a "name" for what you have and walk out of his/her office. Also, IBS cannot morph into IBD. But, you can, like me have both IBD and IBS, or you can be misdiagnosed with IBS, then later have a confirmed IBD diagnosis, etc. I can distinctly tell by symptoms and the feelings in my body when I'm having a bout of IBS or an IBD flare-up. They are very different distinct feelings, onset, and symptoms that I've come to understand after years of learning my own body.I know this is all very frustrating. It's frustrating to me nearly every day. There has not been one day in the past 11 years that IBD (UC in my case) or IBS hasn't played a factor in my day. I'm also now gluten-intolerant, so that is another factor that keeps this all top of mind. But, like I said before, and Patman has reiterated, even with an IBD diagnosis it's not always a pill that's going to make life livable. I've taken IBD meds. virtually non-stop for 10 years. When I try to reduce the dose or get off of them completely, I end up about 6-8 weeks later having a terrible UC flare that can take months to get under control. Lifestyle, diet, exercise, mind/body, yoga, meditation, energy work, etc. all play into being able to get some control into your life whether IBD or IBS is your problem. Stress doesn't cause either of these illnesses, but because the gut is the root of all emotion stress and worry and hypochondria all are going to make even a healthy, non-IBS or non-IBD gut upset. So, in addition to trying to figure out the physical, or body, side of things, don't forget the mind side of things. A little meditation or rhythmic breathing or yoga can go a long way in helping calm the mind and thus the gut.Either way - IBD or IBS - there is no magical cure from the medical industry. Much of this is up to the individual - remember, I pretty much gave up my entire previous lifestyle and job to be able to live successfully with both IBD and IBS. It's not easy, but living with these illnesses can be done.


----------



## petra (Feb 2, 2009)

IBS author-I'm frustrated because I was told there was inflamation when i had my first colonoscopy. I had more tests recently because my new GI thought this might have been due to the prep. Now this test showed inflamation and they are again saying this might have been due to the prep.....so what was the point of that!


----------



## Kathleen M. (Nov 16, 1999)

The inflammation from disease looks a certain way so I assume they took some biopsies and it looked like prep irritation more than anything else. I would get regular blood work to check for markers of inflammation. Those don't go up from colon irritation from the prep, but if they go up in the future then you need another round of tests. And once you turn 50 you will need colonoscopies every so often to check for polyps and remove them. If you take them out as they form you prevent most cases of colon cancer.


----------



## IBD/IBS Author (May 24, 2007)

petra said:


> IBS author-I'm frustrated because I was told there was inflamation when i had my first colonoscopy. I had more tests recently because my new GI thought this might have been due to the prep. Now this test showed inflamation and they are again saying this might have been due to the prep.....so what was the point of that!


I know, it's frustrating isn't it? I think whenever anyone is told they have inflammation you have to question your doctor on what that means to you personally? what kind of inflammation? is it from the prep? is it cellular? did he/she take tissue biopsies to confirm the inflammation? and what do blood tests tell about inflammation markers?I know we've all been taught not to question doctors, at least I was. But, I've learned, especially with gut issues like UC and IBS, that I have to ask questions, respectfully, of course. Because not everything is easily understood, or has just one meaning. I agree with Kathleen that many people have inflammation from the scope preps. So, it has to be left to the tissue biopsy, blood tests, and even good quality stool tests to tell what kind of inflammation one is dealing with. If you ever have another scope, I would tell the doctor of your problems with the prep and inflammation and discuss other alternatives for prepping for the scope. Use this information in the future, so as not to repeat it again.


----------



## Epona (Jul 27, 2000)

Very good information and advice, I love this forum! I'm lucky in that I have a very nice family doctor, he is actually extremely caring and very up on IBS and colitis. While I do have a GI doc, I am not happy with her, she gets snarky if I even ask a simple question (and I DO ask a lot of questions, I used to work in a hospital so docs do not intimidate me, lol), so for now I look to my family doctor for my information regarding my IBS, or whatever I have. I think I may get another GI doctor the next time I need to go in to be seen.


----------



## Slade (Dec 17, 2008)

Kathleen M. said:


> ...One known environmental factor is GI infections, so another reason to wash your hands often to prevent GI viruses and using good food preparation techniques.


Yes I'm sure about this because most of my problems started some months after couple of bouts of stomach flu. This is for IBS. On the other hand some IBD studies claim that pedantic personal hygiene, HACCP and other food safety measures could be the key for the greater IBD occurrence in the developed world. They even tried to infect people with IBD with parasites to keep the immune system busy. I really hope they find the best way to fund IBS and IBD research and some real facts and truths start to emerge soon.Epona, do you have the biopsy results yet?


----------



## Kathleen M. (Nov 16, 1999)

Remember IBD is a different thing than IBS. IBD as well as asthma, allergies and other immune system running amok on things it shouldn't be attacking do all seem to be a problem in cleaner environments. Kinda like a border collie or other working breed dogs. It needs a job. If you do not give it a job it will get obsessed with something, anything, and often that obsession involves destruction. How easily it gets obsessed and possibly which way it gets obsessed has to do with your genetics.It is a hard balancing point. Do we want to go back to the days where pretty much every family lost one or two kids to disease before adulthood just so we have fewer people with usually treatable immune system issues? I do think it is a good idea to let kids play outside in the germs a bit more than they tend to these days, but the places with low incidences of these diseases generally have very high infant mortality rates.


----------



## petra (Feb 2, 2009)

thanks for your replies, they are always really helpful to me-I'll let you know what the biopsies show but am not really expecting anything positive.


----------



## Epona (Jul 27, 2000)

The RN called while I was gone today, so I called her back just now and I'm waiting to see what more they may have to say.But biopsies showed nothing, so right now they are saying severe IBS.


----------



## Slade (Dec 17, 2008)

Epona said:


> Remember IBD is a different thing than IBS. IBD as well as asthma, allergies and other immune system running amok on things it shouldn't be attacking do all seem to be a problem in cleaner environments. Kinda like a border collie or other working breed dogs. It needs a job. If you do not give it a job it will get obsessed with something, anything, and often that obsession involves destruction. How easily it gets obsessed and possibly which way it gets obsessed has to do with your genetics.It is a hard balancing point. Do we want to go back to the days where pretty much every family lost one or two kids to disease before adulthood just so we have fewer people with usually treatable immune system issues? I do think it is a good idea to let kids play outside in the germs a bit more than they tend to these days, but the places with low incidences of these diseases generally have very high infant mortality rates.


No I don't think that living in a dirtier environment is an option and should be encouraged. That's why I have my eyes on the science hoping that they'd find some way to modulate the immune system so that it agrees with our current environment.


----------



## Patman75 (Mar 9, 2008)

Slade said:


> No I don't think that living in a dirtier environment is an option and should be encouraged. That's why I have my eyes on the science hoping that they'd find some way to modulate the immune system so that it agrees with our current environment.


Dirtier environment also applies to an environment that has less or no harsh industrial cleaners and free of antibiotic soaps. The chemicals in those cleaners & soaps can affect the bacterial flora and thus affecting your immune system.Don't hold your breath for science, you might be waiting a long time. There are plenty of wasy to modulate the immune system right now.


----------

