Suspected IBS, any info please?

[Hayleymariex]

Well this is the first time I've posted in the undiagnosed section! As my boyfriend is the one with the diagnosed Crohn's I never thought I'd have the need to really lol!

Lately I've been getting symptoms similar to those shown in less severe IBS, and I was wondering if any one could offer me any information on how it's diagnosed, what I can expect if there is a diagnosis and the types of meds there are? I know that this is mainly a Crohn's disease forum and so I'm not sure how many responses I'll get on this, but even one would be appreciated.

Thank you all so much in advance! :ghug:

 

[UnXmas]

IBS is a diagnosis of exclusion, which means they can't test for it at all. If you have digestive symptoms and all your tests come back negative, doctors diagnose IBS. In my opinion doctors diagnose IBS when they don't know what the problem is, or when they haven't bothered doing enough tests.

Exactly how many and which tests you need to have to ensure you don't have anything other than IBS causing your symptoms is very uncertain. Some doctors will diagnose it without doing any tests at all just based on your symptoms.

What symptoms are you getting, if you don't mind my asking? If you lose weight or pass blood, those are big signs that it's something more serious.

Medications aim to address the symptoms, as the cause of IBS is completely unknown and can't be cured. If you have diarrhoea, medications like Immodium and Lomotil can help. For constipation, stool softeners can help (these are safer than stimulant laxatives, especially if you need to use them long term). There are various other meds for symptoms such as pain and bloating, but I'm not so familar with these. I've read that diet can help manage IBS symptoms as well, though exactly which dietary changes might help you is something you have to figure out by trial and error (just like with Crohn's), because it's very individual.

Just a quick warning: some doctors don't take IBS very seriously. Make sure you find a doctor who understands the effects symptoms can have on your quality of life, even if there's no serious threat to your health. If your symptoms get worse or you devlop new ones, make sure you or your doctors don't jump too quickly to an IBS diagnosis.

It's also my personal opinion that a lot of different conditions get diagnosed (or misdiagnosed) as IBS. There's an awful lot of uncertainty surrounding it. Because of this, and because of doctors' tendency to treat it as no big deal and/or as a psychological or lifestyle problem, I think it's a very unhelpful diagnosis.

So if I were you I'd only accept an IBS diagnosis (if that's what your doctor decides it is) if your symptoms really are mild enough to not cause you any real problems.

I hope your symptoms remain mild - or even better clear up on their own.

 

[Hayleymariex]

Thank you, that was really helpful! The symptoms I've been getting are bloating, not feeling I've fully emptied my bowels after a movement, occasional constipation, and trapped gas which causes pain. I was initially going to just carry on as usual without seeing the doctor, but my boyfriend, obviously with him having gastro problems himself, is taking me himself so there's no getting away from it. I suppose it's better than being uncomfortable a lot of the time though.

 

[gatheringroses]

Have you travelled anywhere recently? It could be a parasite (even if you have not travelled). Some doctors don't do comprehensive parasite testing before giving an IBS diagnosis. I read a study recently where many IBS cases (up to 1/4th? Maybe not that high, but a significant number) were parasitic in nature.
I'd ask for a referral to a GI specialist, and to ask your GP to do at least three stool tests for parasites (often, many don't get picked up). If your GP is open to it, you may wish to get treated for some harder-to-find parasites before accepting a diagnosis of IBS.

So, while your symptoms sound, to me, like they could be IBS, I think - like others have said - it's important to rule out all causes.

Have you lost any weight? If so, this is a huge red flag that it's not IBS

 

[Hayleymariex]

The only place I've travelled recently has been Liverpool, but I've had the symptoms for around half a year. I haven't lost any weight either (not for lack of trying lol!)
I've also tried to rule out any food intolerances, by cutting certain ingredients out of my diet, trial and error really, but as my symptoms showed with everything I eat even when cutting everything out I don't think it's likely to be an intolerance. I'll have to make an appointment to see my GP tomorrow I think. Thank you for your help

 

[Mehita]

Maybe Celiac disease? With adults, symptoms sometimes take 6-9 months to go away. Just a thought.

 

[Hayleymariex]

I've never heard of Celiac, I'll definitely have a look into it, thank you!

 

[valleysangel92]

celiac/coeliac is whats known as an auto-immune intolerance to gluten, which is a protein found in wheat, barley, rye and unpure oats. The small intestine is lined with small protrusions called villi which increase the surface area and help absorb food. When someone with coeliac eats a food containing gluten, it causes an unusual response by the body's immune system which produces antibodies and attacks the lining of the small intestine, damaging the villi. Symptoms can vary greatly from person to person but can include the ones you've described.

Coeliac is diagnosed through blood tests and an endoscopy with biopsies and then controlled with a gluten free diet, as mentioned above, it can take a few months, even up to a year, for symptoms to fully disapear, especially in adults who may have had the condition for a long period of time without realizing as sometimes it does not immediately cause noticable symptoms.

hope this helps

 

[Mehita]

Just don't take gluten out of your diet until you're tested or you could get false results. It's also important to get the test before experimenting with cutting out gluten because there is a difference between having Celiac disease and being gluten intolerant. Like valleysangel92 said, Celiac causes damage to the small intestine, whereas intolerance just makes you feel lousy, but no damage.

Valleysangel92 - Just curious if you've ever had a gluten exposure trigger a Crohn's flare? When my son was at his worst, I never knew what we were dealing with. Gluten, Crohn's, or just some virus he caught at school. Very frustrating. We've become super strict with the gluten free diet just so we can rule it out when symptoms start up.

 

[valleysangel92]

I havent had any gluten in over two years, last time was at a resteraunt that made mistakes, i wasnt diagnosed as crohns then but my symptoms did get much worse, so i guess that could of been the crohns as well as the gluten , which also made my tongue swell up ... When i was trying to get diagnosed tho i did get many doctors just telling me it was the coeliac despite having negative bloods for over a year -_-.. They suggested i "just had to go heal".. Even had one say i was doing it on purpose so i agree its very frustrating

 

[prettykitty]

Hi Hayleymariex! Kudos to your bf for insisting you go to the doctor! Like you, I had assumed I *just* had IBS. When I explained my symptoms to my GP, she ran some tests -- all normal! -- and then offered me a referral to a gastroenterologist. When I finally got around to going to the GI, he also thought it sounded like IBS -- and he proceeded to run more tests to exclude other things. He identified Crohns on colonoscopy. Even mild symptoms can be IBD.

And I want to put out there that IBS can cause plenty of distress and be very disruptive to quality of life. I agree with what others have said -- make sure you find a doctor who takes it seriously.

 

[Hayleymariex]

Thank you all so much! You've not only helped me but one of my friends who has been suffering with what she assumed was a gluten intolerence is now going to go to her GP and demand blood tests, sadly I won't be able to make an appointment until this Friday because my doctor is on holiday until then and I don't trust anyone else there. Sigh.

 

[Hayleymariex]

Sorry to bother everyone, but could any of you let me know if it's absolutely necessary to have a blood test to diagnose IBS? I have a phobia of needles, which is preventing me from going to see my GP, but I'd really like to know what's going on. If I say I don't want a blood test will they still diagnose me or will they just send me away? Sorry to be a bother, just anxious.

 

[valleysangel92]

Its not a bother.. Honestly ..
There arent any diagnostic tests they can do to test for IBS.. Diagnosis is mainly based on a process of illimination... Tests are carried out to rule out things like coeliac or crohns and if these are negative, a.diagnosis of IBS may be considered . If you really dont want the tests, your doctor may be willing to trial you on IBS medication and diagnose from that... If you do get an IBS diagnosis and your symptoms get worse, or things just dont feel right, dont be shy of going back and getting second opinipns or further investigation.

 

[Lustforlife]

Agree with valleysangel on trailing some of those meds - though some people with IBD can get worse on them, so don't keep taking them if you get worse. (Ie. slowing down your bowel or bulking up the stool wouldn't be good if you were to have a stricture) I've also heard of people trying the FODMAP diet helping for IBS but having the opposite effect in IBD. If you were able to get one blood test (because that's all the needles you could force yourself to take), have it be for crp/esr levels, which measure body-wide inflammation. They can be normal even in people with Crohns, but the majority of the time they will pick up inflammatory activity if its there.

 

[Mehita]

They might be able to collect info from a stool sample. It's worth asking about.

If it's the sting of a needle that bothers you, there is a numbing creams available. My son always asks for the numbing cream and it made a world of difference in his anxiety level for blood draws.

 

[UnXmas]

Unless they diagnose IBS just on symptoms, a blood test is usually one of the first things they do. Blood tests are not specific for any disease, but as mentioned above they can detect things like inflammation markers and vitamin deficiencies which may happen with illnesses like Crohn's, but not with IBS, so it helps in detecting whether further, more invasive tests are necessary.

If you have the more invasive tests - colonoscopy, endoscopy, etc., there'll be a long wait if you're being seen on the NHS, and they will be done in a hospital rather than by your GP. And some of those tests require needles anyway, e.g. to give you a sedative before a colonoscopy.

So unfortunately a blood test is one of the best ways to distinguish IBS from other causes of your symptoms. I expect if you're young and otherwise healthy, they may be more willing to diagnosing IBS without any tests. Whether you should try to stand having a blood test really depends on how concerned you are that there may be something more than IBS going on.

It's very unlikely they'll send you away if you refuse a blood test. A phobia of needles is very common, and most doctors will be sympathetic about it. I've fainted more than once having tests done, and the nurses or doctors doing it have always been nice about it, even though I feel quite silly that I've been through so many tests and still pass out when having blood taken sometimes! By the way, if you're like me and faint easily, you can ask to lie down when they take blood (it's usually done with you sitting up), this helps me a lot because it's easier for your blood to flow to your brain and prevent feeling faint.

I think it may be best if you see your GP and explain both your symptoms and your needle phobia. The GP should be able to advise you on whether tests are necessary at all, based on your symptoms, and whether alternatives to a blood test are possible. They're really not likely to refuse to treat you - you're perfectly entitled to refuse any tests you don't want.