[Epona]

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]

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]

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]

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.]

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]

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]

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]

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

 

[Epona]

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]

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]

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]

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]

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

 

[jmc09]

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.]

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]

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.]

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]

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]

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]

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