Has anyone else been told they have IBS?

[x0lou0x]

I have been suffering really badly for over a year with tummy pain, diarrhea everytime I eat/drink, blood in my stool, tiredness, can't concentrate at uni because I am so exhausted all the time, head aches etc.
When I first went to the doctors I wasn't having blood but was having all the other symptoms I got told I had IBS so I went away and just thought it was something I would have to deal with. I then got really worried when I started getting blood, I have had intermittent bleeding for 8 months now and I was referred to a gastroenterologist in August, they sent me off for a colonscopy and through the sedation I remember them taking LOTS of biopsies, saying I had mucous and nodules which sent all sorts of alarm bells ringing in my head of what it was and on my sheet it said CROHNS??? (written like this) and that I had Ileal-lymphoid-nodular hyperplasia. I was then left to wonder what on earth was wrong with me for 4 months until my next appointment, however being in so much pain and discomfort led my GP to get me an appointment earlier which I had on Tuesday. This consultant told me I had IBS and that all my bloods and my colonscopy results were normal (which is not true because I have had to be on iron tablets for over a year as I can not keep my iron levels up), she also said its very common to see nodules in the terminal ileum which may be true but why give it a name if this is normal?. after all this to be told I have IBS and that my diet and stress is to blame I felt so disheartened. This means no medication or anything. The consultant would not put me for further tests and only said to see a dietitian and to take fibregel. I have a good diet involving primarily fish and potatoes etc. I don't understand why they would not do any further tests and I basically felt like they had closed the door for me finding out whats wrong. I am so frustrated, thankfully my physician said this does not seem right and has referred me to another hospital but this means more waiting and worrying. Has anyone else had a similar experience with doctors automatically thinking you have IBS? Sorry for the long post, I needed to vent.

 

[Ihurt]

I have been having increasing abdominal pain for the last year and half. I was told IBS by my gastro. He did not even want to do any tests on me. Well I just had an MRE of small bowel which was normal. I have not had colonoscopy and not sure if I will since I had a really horrific experience with the MRE. I also am waiting for fecal calprotectin results which I should get Saturday when I see my doctor.

I think gastro docs love to blame everything on IBS. Did you doc say why you have bleeding with your stools? I mean where does he think the blood is from or what is causing it?

I definitely would want more answers, especially due to the blood in the stool.

And if he thinks IBS, did he give you any meds for it. There are a few things they use such as; Bentyl, donnatol, elavil, librax. These are some of the meds they use for the pain and if you have diarhea and cramping. He should have given you something to try and help the pain. That is ridiculous to send you on your way with fiber!

Sorry you are dealing with this, you are not alone. I have pain all the time and it can be quite severe. Hope you get some answers and help soon.

 

[x0lou0x]

She said that it must be from tears, but I know I'm not a doctor but its not painful when I bleed and its mixed in with the stool and its often watery blood rather than the bright red that you would get from a tea. and why would this be happening all the time? It didn't make sense at all to me. no she didn't give me any medication just told me to buy fibregel. I have just bought a lot of food to follow an IBS diet I am determined to follow the diet plan properly so that next time I see someone I can say to them I've done it.
I am sorry to hear you are going through the same sort of thing, it is very frustrating not knowing, I hope you find some answers from the doctors too.

 

[x0lou0x]

This is what I thought, i wouldn't be as worried if it wasn't for the blood. I felt like she'd already made her diagnosis before I even walked in the door, she twisted all my answers to her questions as when I said I have completely lost my appetite recently (not normal for me I normally have a healthy appetite) she said oh so you get full easily and I said well yes I get full easily but I've lost my appetite and she then focused on "Oh so you get full really easily, this is a symptom of IBS".it was only when I got home and read loss of appetite isn't a symptom of IBS that it clicked why she asked me that. She did it with the abdominal pain as well she asked me if it goes away after I have a BM and i said it varies as to how bad the pain is and again she focused on the fact the pain goes after a BM to fit in with IBS.

 

[Catherine]

My daughter was dx ibs 6 months prior to crohn dx. You do not get blood with ibs. Her final dx was made after 12kg weighloss in a two months period.

I would request the calprotectin stool test.

 

[UnXmas]

I was told I had IBS before I had any tests done and it was completely wrong. I think it's doctors' default answer to digestive problems. I went to the doctor, mumbled something about bowel problems (I was young and embarrassed at the time, and did myself no favours by trying not to get to detailed about my symptoms), and they told me I had IBS. They were so certain: it wasn't put to me as a possibility, but as a fact. They asked me hardly any questions about my symptoms. I think because I was young and had been healthy previously, they assumed IBS because it's supposedly common. (Probably it's common because they misdiagnose so many other things as IBS!).

There are signs that officially warn doctors a digestive problem is more serious than IBS. I think they're called "red flags." Bleeding is one of them. Weight loss is another.

Bleeding can be superficial though - you can pass blood from hemmorids or just tears in the skin, which is the only reason I can think they would disregard something like that - if they're assuming it's hemmorhoids and not actually from an inflammed intestine. Even if it is something like that, it still needs to be confirmed and treated. Could it be something like that for you? It's more likely if it's just a little red blood, I think. If it's black or a lot it's more likely from inflammation or something inside the digestive system. (I'm not an expert - don't take my word on this for definite, it's just from what I've read over the years!)

They are probably saying it's IBS now because your tests results were normal. Sometimes it's ridiculous how tests come down to doctors' interpretation, but it is the case that sometimes they'll write down an abnormality - the "nodules" in your case - just to be comprehensive, when it's not actually a sign of a serious disease or a possible cause of symptoms, hence they'll still summarise the findings as "normal". Sometimes they seem overly keen to make patients "normal!"

The way they wrote "Crohn's?" on your sheet sounds like some doctor was considering it as a possibity and asking it to be checked for, but then the results did not confirm it.

If I were you I would tell the next doctor you see very clearly about the blood - how much, how often, colour, etc. and ask them what is causing it, because, while it might not be a sign of something serious, it definitely is not from IBS. Or make an appointmen to see a different doctor if the one you saw wasn't helpful. Tell them you're concerned about weight loss and any other symptoms you're having as well. Try not to appear overly anxious or keen for tests because that might have the wrong effect on how they perceive you; just state the symptoms you're having honestly and let them realise that there is more going on. (Telling them what tests you think you need or what you think's wrong usually doesn't go down well.)

If you do end up being diagnosed with IBS, you are still entitled to be treated seriously and get help with symptom management. There are medications to help appetite, stop diarrhoea, pain killers, etc.

Hope you get some help soon.

 

[x0lou0x]

Yes they did think it was supeficial bleeding but she didn't ask me many questions about the blood whereas my physician knows all the details about that hence why she thinks its an internal problem and ruled out a fissure/haemorrhoids straight away. thanks for the advice I think I do need to talk to the next gastroenterologist without getting embarrassed and try to explain everything properly and why i don't think the bleeding is haemorrhoids or a tear, in the mean time I'm going to make a food vs symptoms diary and stick to it this time! thanks everyone

 

[x0lou0x]

I have now just got Erythema Multiforme on my foot, is this related to any bowel disorders? My doctor said it can be caused by a number of things so it is difficult to tell whether it is or not. I am scared it will spread has anyone had this??

 

[fosterschick]

hi i dont know if this is of any help , i am i the smae postion , but i had a test done with the oxford screening i had to pay for it about 40 pound its a fecal calprotecting test and can help distingish whether its ibs or ibd via the inflammtion in bowel , apparantly this calprotecting is hi if there is inflammation present and as ibs is a purley functional disorder then no infmammtion should be present , just something to think about xx

 

[x0lou0x]

That sounds ideal, do the nhs not do that test for free? How did your results turn out?

 

[fosterschick]

hi sorry for delay , im not sure abot nhs doing for free but im sure you could ask , mine turned out to be positive so i will take the results when i have my scope x good luck x

 

[atomb]

I hear ya ..
I have the IBS diagnosis as well but quite certain Im a crohnie.
My father got his diagnosis at 60 when they found diseased areas in his bowel but i have been in pain since 15. We share almost all the same symtoms of pain to depression.

There really are no definitive tests for Crohn's from what i understand ....
The tests seem more subjective.

There is no blood test that will make you a bonifide Chronie per se only assumptions made upon blood and stoolinflammation states ..

If yours gi issues progressed to a diseased state you willl get a real diagnosis.

Not the IBS label which is the equivalent of I dont know .
The sad thing is if you get The Crohn's label you'll be SOL anyhow.

Remeber the industry on the whole is more interested in managing you then fixing there is alot more money in it.Its called repeat business.

If the docs do the all the ibd tests and find nothing their buts are on the line from the insurance companies so its a tough road to cross.

There are so many cases of ibs now in the US i wonder if any or how many progress to Crohn's?

I feel for ya .

Im going back to my doc soon to get a better diagnosis
but hes taken care of my dad right now because they have found enlarged lymph nodes and biopsies have been done that say negative on cancer and we are tryng to figure out if its the Crohn's at the moment.Scary stuff.
I hope its the Crohn's and since the power went out here we have been on hold.
Be well

 

[Ihurt]

It is interesting. I mean my mom had mucus colitis for years( this is just what they called IBS back in the day). She had all kinds of scopes and tests and they were all negative.

I have been told I have IBS. I went through a MRE of small bowel( as I have upper gut issues as well as lower). My MRE was normal and I also had a normal fecal calprotectin test as well. I have a lot of other health issues though that complicate things for me. The MRE of my small bowel made me soo sick( all the chemicals they injected in me and the stuff I drank). It gave me horrid diarrhea and subsequently I ended up getting a bad UTI. It really set me back. So now my gastro wont even consider a colonoscopy at this point.

I still think I have something going on though that is something other than IBS. I mean I am sure there are a lot of different things that can irritate and inflamme the intestines besides crohns and UC. I get inflammation in many areas of my body. I have IC which inflammes my bladder( this I believe is a bacteria cause though). I also get imflammed nasal passages on and off. I also had an inflammed throat years ago. Had biopsies and everything, they could not figure out what I had.

I have known a couple people who have been dx with IBS and one has had it for over 20 years. I agree, doctors do not know what IBS even is. They do not even know what crohns is really, nor what causes it! I wish they would do some research and really look into a cause for some of these awful diseases. I mean they cannot get a cure unless they first find a cause. But greed will win over that. They can make more money just making drugs that put a bandaid on things. It is sad...














QUOTE=atomb;529134]I hear ya ..
I have the IBS diagnosis as well but quite certain Im a crohnie.
My father got his diagnosis at 60 when they found diseased areas in his bowel but i have been in pain since 15. We share almost all the same symtoms of pain to depression.

There really are no definitive tests for Crohn's from what i understand ....
The tests seem more subjective.

There is no blood test that will make you a bonifide Chronie per se only assumptions made upon blood and stoolinflammation states ..

If yours gi issues progressed to a diseased state you willl get a real diagnosis.

Not the IBS label which is the equivalent of I dont know .
The sad thing is if you get The Crohn's label you'll be SOL anyhow.

Remeber the industry on the whole is more interested in managing you then fixing there is alot more money in it.Its called repeat business.

If the docs do the all the ibd tests and find nothing their buts are on the line from the insurance companies so its a tough road to cross.

There are so many cases of ibs now in the US i wonder if any or how many progress to Crohn's?

I feel for ya .

Im going back to my doc soon to get a better diagnosis
but hes taken care of my dad right now because they have found enlarged lymph nodes and biopsies have been done that say negative on cancer and we are tryng to figure out if its the Crohn's at the moment.Scary stuff.
I hope its the Crohn's and since the power went out here we have been on hold.
Be well[/QUOTE]

 

[Gabi]

I can't believe so many people have been to this too. I'm I'm hell with what I believe must be IBD as I've bleeding weight loss etc and I'm being told I have IBS. They won't give me pain killers and I'm in serious pain. I'm losing weight I've no hope left as I've had a second opinion and he has just discharged me yesterday. I need a crohns specialist but I can't find one in my area and I really can't afford to go over seas. 9 months with "IBS" and I swear I can't go on. To all you who have suffered for longer I take my hat of to you and all I can do is hope we will all get a consultant who can see that we aren't crazy!
I've also been put on lyrica/pregablin for pain and so far I've just been walking around like a drunk woman!!! The side effects are awful an i know it isn't helping anyway. Has anyone else got put on these anti anxiety drugs such as lyrica or amatriptaline?

 

[x0lou0x]

I'm sorry to hear you are in pain Gabi! I went to see a dietician and she suggested going on the anti candida diet, it is horrific as you have to cut loads of food groups out but is so worth it! I have gone from 7-8 BMs a day to 2, I still have the odd bad day and I am still having bleeding and mucus but it is a vast improvement. I have been reading up on the benefits of giving up yeast for people with IBD and IBS and it can help a lot of people as it adds to inflamation in the bowel so maybe you should give it a try?

I am seeing another specialist at the end of January as I am convinced it is not IBS, especially as since I posted this I developed a target skin lesion which my GP thinks it is related to everything else i've been experiencing. just want answers really!
hope if you try cutting out yeast it will help you even a little bit like it has helped me!

 

[juljul]

Hi x0lou0x,
I have not been told I have IBS. My Mum has been told she has IBS, and an uncle sadly died of a strangled herrnia in his thirties because he was mis-diagnosed as having a simple stomach complaint ....but it was his bowels, they were diseased!! They have not given me the IBS label, instead it was proctalgia ...though I rarely have proctalgia fugax, but have many more GI symptoms. They have to offer some label or they are made to feel like they have failed I guess. They don't like complex challenging cases is my understanding in this era of the NHS being about business over care!!

I think we have to trust our instincts.....the gut feeling ...and not give up, how can we accept being 'not diagnosed correctly' when we know deep down it is not a correct diagnosis and we haven't got the correct treatment to help. etc.

Gabi, I am so sorry to hear what is happening to you too. Hang in there. You are not alone if it is any consolation. I was told there is nothing wrong with my GI system what so ever by the last doctor (though he was not the consultant but his registrar). He was very insulting and I left in tears. All the while I have been in agony for 2 years. But I am fighting it somewhat with very many (home-made) turmeric tablets daily. I know it is inflammation. But no one will believe me either. My "normal" bloods do not help. Having joint pains and tendonitis does not help my cause either. Being diagnosed with a CTD (auto-immune) is not helping my cause either. I am starting to feel like there is a conspiracy. I feel the need to get out of this country for a firm diagnosis to somewhere where healthcare is about care, and is cheap enough....but then I am playing into their hands.

There has to be a consultant out there who is kind and understanding and is willing to listen and believe us. I think the NHS is in for a major overhaul in the wake of the Staffs scandal. I do hope so. Stay strong everyone.

juljul xx

 

[UnXmas]

There has to be a consultant out there who is kind and understanding and is willing to listen and believe us. I think the NHS is in for a major overhaul in the wake of the Staffs scandal. I do hope so. Stay strong everyone.

After many years I found NHS consultants who could help me. But I still can't get my head around the number who are so determined to diagnose symptoms as IBS, or some stress-related illness, or some mental health condition. And then they act dismissive and/or angry with the patient for seeking help.

 

[Ihurt]

This can also happen due to an allergic reaction to a medication. Are you taking any meds? What is your doctor doing about the Erythema Multiforme? This can get serious so you have to wacth that it is not spreading. If it is, you need to get to a hospital. Erythema Multiforme is like Steven Johsnsons syndrome. If you notice any blisters appearing anywhere or large areas of skin peeling, you need to get some help...

Hope you feel better soon...

I have now just got Erythema Multiforme on my foot, is this related to any bowel disorders? My doctor said it can be caused by a number of things so it is difficult to tell whether it is or not. I am scared it will spread has anyone had this??

 

[CLynn]

I was told I had IBS before I had any tests done and it was completely wrong. I think it's doctors' default answer to digestive problems. I went to the doctor, mumbled something about bowel problems (I was young and embarrassed at the time, and did myself no favours by trying not to get to detailed about my symptoms), and they told me I had IBS. They were so certain: it wasn't put to me as a possibility, but as a fact. They asked me hardly any questions about my symptoms. I think because I was young and had been healthy previously, they assumed IBS because it's supposedly common. (Probably it's common because they misdiagnose so many other things as IBS!).

There are signs that officially warn doctors a digestive problem is more serious than IBS. I think they're called "red flags." Bleeding is one of them. Weight loss is another.

Bleeding can be superficial though - you can pass blood from hemmorids or just tears in the skin, which is the only reason I can think they would disregard something like that - if they're assuming it's hemmorhoids and not actually from an inflammed intestine. Even if it is something like that, it still needs to be confirmed and treated. Could it be something like that for you? It's more likely if it's just a little red blood, I think. If it's black or a lot it's more likely from inflammation or something inside the digestive system. (I'm not an expert - don't take my word on this for definite, it's just from what I've read over the years!)

They are probably saying it's IBS now because your tests results were normal. Sometimes it's ridiculous how tests come down to doctors' interpretation, but it is the case that sometimes they'll write down an abnormality - the "nodules" in your case - just to be comprehensive, when it's not actually a sign of a serious disease or a possible cause of symptoms, hence they'll still summarise the findings as "normal". Sometimes they seem overly keen to make patients "normal!"

The way they wrote "Crohn's?" on your sheet sounds like some doctor was considering it as a possibity and asking it to be checked for, but then the results did not confirm it.

If I were you I would tell the next doctor you see very clearly about the blood - how much, how often, colour, etc. and ask them what is causing it, because, while it might not be a sign of something serious, it definitely is not from IBS. Or make an appointmen to see a different doctor if the one you saw wasn't helpful. Tell them you're concerned about weight loss and any other symptoms you're having as well. Try not to appear overly anxious or keen for tests because that might have the wrong effect on how they perceive you; just state the symptoms you're having honestly and let them realise that there is more going on. (Telling them what tests you think you need or what you think's wrong usually doesn't go down well.)

If you do end up being diagnosed with IBS, you are still entitled to be treated seriously and get help with symptom management. There are medications to help appetite, stop diarrhoea, pain killers, etc.

Hope you get some help soon.

After having Crohn's symptoms for a year when I was in college, I went to our family doctor. Ignoring the red flag of my older brother having an ulcerated colon at age 21, and with no tests of any sort, no blood levels, x-rays, or scopes, he dismissed my symptoms as IBS and sent me on my way with an antispasmodic. I just knew he couldn't be right, so I picked one of the two GI's our town had listed in our phone book and made an appointment. (I picked the one that didn't sound foreign, lol) He caught the red flag and scheduled me for a blood levels and a scope. Finally got a diagnosis.