Feeling fed up of being diagnosed with IBS and seeking advice

I hope no one minds me posting here, I've been really ill for coming up to 5 months and my gp keeps diagnosing me with IBS, I hoped maybe if I gave some of my symptoms someone might be able to confirm my suspicions it *could* be crohn's? I'm getting really down about being undiagnosed and in a lot of pain.

I'm 32, about October last year I started getting painful stomach cramps and lethargy, I had a load of tests and they were inconclusive (bloods) US scan has showed no abnormalities I'm currently in a 2 month wait for a CT. My inflammation markers were normal. I have chronic stomach pain upon waking every morning, and a bit of back pain, I have particular sore spots on the left side of my abdomen where the colon bends downwards under my ribs, and my left pelvis, I have another painful area on the far right side roughly in the middle (when my gp has done physical examinations these are the most painful areas and he said it's colon rather than other organs) the whole of my abdomen is tender, usually bloated and just uncomfortable and heavy. I've had tests for celiac disease which were negative. Bowels have been typical IBS in variation so that part I can agree with the GP but surely constant pain for 4/5 months isn't normal for IBS?

I get very lightheaded, and I'm not feeling hungry due to the pains so I've lost about a stone and a half in the last few months, sometimes I feel nauseous and the cramps can be unbearable, I feel like I haven't felt 'well' in months now.

There is urgency and softness sometimes and afterward the pain feels often worse not relieved. (sorry, tmi I get embarrassed about these things) and things are certainly not always normal but no blood).

The past month I've had considerable pain in my left shoulder socket and blade, and under the left side of my ribs, sometimes on the right too but left predominantly. Other than this I get quite shaky, my knees hurt and my joints feel achy/stiff. I get acid reflux and am on Omeprazole, my gp started me on it about a month ago. All in all, the constant stomach pains, fatigue, general unwell feeling and rib pains are getting me down, I feel so immobile and tired all the time, it's not really like me and I have a small boy and a business to run so it's been quite hard on my partner picking up after me because I've been so out of action. Apparently 'soft organs' all appear ok and bloods are all normal. Is there any way this could be crohns? A friend of mine used to suffer badly and said my symptoms were very much like his and that he also had a negative inflammation marker blood test. My blood showed I was slightly anaemic.

I'd be grateful for anyone's time as since I had the US my gp wants to diagnose me with ibs but something is telling me it's not that. I would be really really grateful for anyone's time.

Hi Anna, welcome to the forum. Absolutely it could be Crohn's, but it could be any number of other things as well (likely not IBS though!). Is there a plan past the CT scan? I ask because with symptoms like yours, typically most doctors will want to do a colonoscopy and/or upper endoscopy first. If the CT doesn't find anything or is inconclusive, by all means do push your doctors for some scopes, as those can see quite a bit and take biopsies too (some types of IBD, such as microscopic colitis, can only be seen on biopsy, so biopsies can be a very important piece of the puzzle).

Bloodwork is not the most reliable thing, and if they were testing your inflammatory markers (CRP and ESR), those are normal in about 10% of IBD (Crohn's/colitis) patients - even when in a bad flare. I think I'm in that 10% myself. Unfortunately, having normal bloodwork even when you feel terrible is yet another hurdle to have to jump over to get a diagnosis. Don't let your doctors say that you're "fine" because your bloodwork looks okay - you obviously know you're not fine, so keep pushing for tests and answers.

You mentioned having tests for celiac - was that just the blood test, or did they do an upper endoscopy with biopsies? The blood test for celiac isn't the most accurate, the biopsies are much more accurate. If you do suspect celiac (and it is possible to have both celiac and Crohn's), you could try going on a gluten-free diet for awhile to see if that helps your symptoms at all. It's also possible to have a gluten sensitivity without celiac - meaning, you'd have symptoms but not intestinal damage and no signs of celiac, but gluten would still make you feel bad and have symptoms. So again, a trial of a gluten-free diet might not be a bad idea to try while you're waiting for the CT.

Another idea to try is to keep a food diary, if you haven't already. Certain foods can make symptoms worse but it's highly individual. For me, coconut is public enemy #1! A lot of us generally speaking have issues with fiber, fresh fruits & veggies, nuts & seeds, and some have issues with gluten and lactose too. You could try a low-residue diet (where you eat bland, white foods like rice, white bread, pasta, skinless potatoes, baked chicken & fish, etc) for awhile to see if that helps.

Did I answer most of your questions? I hope that helped a little bit. Good luck with the CT, please keep us posted on how it goes!

Thank you, that's incredibly helpful because the CT wait is such a long one I am waiting for a call from my GP and I'm going to push for an endoscopy or colonoscopy, right how I've just eaten and have massive pains in my stomach

Is your GP good, are they taking you seriously or are they the one saying it's IBS? IBS, if it's a diagnosis at all (which is debatable), should really be a diagnosis of exclusion. In other words, they should do tests on you to confirm or rule out any other possibility first before they even think of slapping the IBS label on you. Sadly a lot of doctors are lazy or maybe just bad, and will label anyone with gastro-type symptoms as IBS. It could be anything in the IBD family (Crohn's, UC, microscopic colitis, mastocytic enterocolitis, etc) or it could be something like Lupus, Behcet's, Addison's disease, etc (those are all auto-immune illnesses that can sometimes mimic Crohn's-like symptoms).

Sorry, I started rambling there. Yes, definitely do push for both colonoscopy and upper endoscopy, and make sure they take lots of biopsies from each scope. Things like Crohn's and microscopic colitis have "skip patterns", meaning the inflammation is patchy. So they have to basically biopsy the right areas - so, the more biopsies they take, the better chance you have of getting a diagnosis. Good luck with your GP, I hope you can make some meaningful progress while you're waiting for that CT scan.

Oh, and I forgot to mention, in your earlier post you mentioned joint pain. Is it usually in the same joint(s) or does it move around? When I flare up, I have pain in most of my big joints, but sometimes I have pain in my right hip that seems to be independent of what my guts are doing. I went to my GP, and he did x-rays and diagnosed me as having mild arthritis in my hip. He sent me to physical therapy and that helped quite a bit. I'm 34 so obviously too young to have wear-and-tear type arthritis, but certain types of arthritis are fairly common in conjunction with Crohn's. So that could be another avenue of testing for you, to see if you have arthritis, and if so, what type. Could be a big piece of the puzzle for you.

It's my GP who wants to diagnose me with IBS, I've had to really fight to get beyond having normal bloods, he said I'm in the prime age group and female so it was either ibs or celiac, when bloods for celiac came back negative it was back to ibs again, I feel like a bit of a burden pushing for more but I've been really worried, because he knows I'm worried I'm further labelled as 'typical ibs' it's really frustrating. I get a lot of pain in my shoulder, socket and blade and a lot of rib pain, both sides but mostly left. My GP said crohns is a possibility but unlikely as my inflammation marker came back normal, so again I feel like I'm fighting the system. Initially my concern was my pancreas due to the location of the pain but the US and bloods didn't pick anything up, and he suggested a pneumocolon CT, but the wait is ridiculous despite being told it would be requested as urgent due to my 4 months of pains. I also get pains in my knees quite often, my mum suffers quite badly with arthritis so I just figured it was maybe heriditory I didn't figure it could be a crohns symptom. I think the feeling with my surgery is 'hysterical self diagnosing woman' and I feel quite down about it as no one seems to be actually listening to my symptoms, I mean, the stomach pains just don't go away they just vary in severity and location but I can't remember not having stomach pains, I just want a diagnosis so I can get on with my life really, I've usually got loads of energy and I'm so listless, it's rubbish! Thanks so much for your time.

Oh, honestly then it sounds to me like time for a new GP! No sense wasting time with a doctor who doesn't take you seriously. Are there other GPs in your area that you could go to for a second opinion? And have you been referred to a gastroenterologist (GI)? If not, it sounds like time for that as well. You should not have to deal with such shoddy treatment from your doctors, so if it is at all possible, ditch your current doc and find someone who listens!

I've been in that boat myself, my normal GP is quite good but one day I was so ill and he wasn't available, so I went to see a different GP, and this guy was a total jerk. He took one glance at my file for literally about 2 seconds, then he declared, "You have IBS. And you look depressed, would you like some Zoloft?" Wow, he didn't even let me speak before declaring I have IBS and I "look" depressed (how clinical is that, do they teach that in med school?) and offered me an anti-depressant. I got so mad! From that moment, I decided that I don't care if a doctor thinks I'm a pain or a burden or annoying, I'm just going to fight for myself because I know I'm in pain, I know it's not something made up or "womens troubles" or whatever. Seriously, you mentioned feeling like a burden to your GP - do NOT feel that way! Doctors are supposed to help! If your doctor isn't helping, find one who will. I know, it's so difficult to have to fight for your health especially when you feel terrible all the time, but do keep fighting and don't stick with bad doctors.

As for your GP, like I said, inflammation markers will always be normal in about 10% of IBD sufferers. One normal blood test definitely does not rule out Crohn's! And you don't get joint pains with IBS, but they are common with Crohn's. IBS doesn't make you lose weight nor does it give you fatigue - you mentioned both of those things too. Do you have other symptoms like blood in stool, night sweats, getting up in the night (also called "nocturnal diarrhea"), anything like that? Those are all also signs that it's something more than "just IBS."

Thank you, it's reassuring to know I'm not alone. I do have night sweats yes, even when it's really cold, but no blood or diarrhoea, sometimes a little but not much. I've been thinking about changing gp's, I used to work at that surgery so it's always a little awkward anyway, there haven't been any referrals to GI though I'm going to ask, everything takes so long I feel like I'm stuck in the system half the time. A month or so ago my gp said to me 'Anna, maybe it's time you just accept it's ibs' that was before I even had any bloods and made me feel really disheartened!

Hi Anna,

I can totally relate to you. I have been suffering for over 2 years now and also am being told IBS! My symptoms do Not even fit the IBS criteria. My main symptom is severe pain. My gastroenterologist told me that there is a condition that some with IBS get called Visceral pain. I am not sure about it, be he says that it is an over sensitivity of the pain receptors. I am not buying into that though.

I went through all kinds of tests too and nothing to much has shown up. I have other health issues to so it has been really tough. I also have Interstitial Cystitis of the bladder which is one of the most debilitating diseases I have dealt with. I am sorry you are feeling like you are getting no answers. Just want you to know you are not alone. Did you doctor give you anything to try for pain relief?

Thank you, sorry to hear you're going through a tough time, I feel like the more I go to my gp the more I feel like a real pain, having worked there in the past I know what kind of reception I could be getting, harsh I know but sadly that's the truth! I've been given tramadol but I don't take pain killers much and it wipes me out so I don't take it unless I have to, and I can't take it during the day as it makes me feel high!! I am desperate for some anti inflammatories as my stomach feels inflamed, not bloated if that makes sense? And today I have such bad rib pain it's like someone has punched me, weirdly my right knee is doing the same today, it's very odd indeed!

Oh, I am so sorry you are in pain. I hear ya about the pain meds. I cant tolerate them to well either. I get so many side effects. Have you ever tired a heating pad? I always use my heating pad on my abdomen and also whenever I have back pain or wherever I have pain. It seems to help some. I also get that feeling of like I have been punched in my abdomen. It is like a very sore feeling inside. I am sorry you are feeling so bad, I hope you feel better soon.

I think it's worth remembering that there are more options than IBS and Crohn's. Crohn's is a relatively common condition, so if you're researching bowel problems, it will come up often. But there are so many rare conditions out there.

I strongly suspect that IBS is not a distinct condition, but a diagnosis which covers any digestive symptoms that doctors have found no other reason for, hence numerous different conditions get misdiagnosed as IBS.

Unintentional weight-loss should not be regarded as a symptom of IBS, however I have known doctors to be very flexible in their understanding of IBS and using it as the diagnosis when there are symptoms that should in theory prohibit it. (This goes for the length of time you've been in pain for too, though I'm not sure if there are set criteria regarding the duration of IBS pain, or whether a particular length of time is considered typical.)

I'm sorry if that sounded negative, but I think it's important to be realistic - your symptoms are quite general (could result from a great many different conditions) so you may have a hard time getting a correct diagnosis and getting doctors to move past suspecting IBS. Finding a doctor who will look for the cause of your symptoms willingly will help you a great deal.

Colonoscopy and endoscopy should detect Crohn's if it is the cause of your symptoms, but as I said, I don't think your symptoms point specifically to Crohn's, there are many other possibilities. But these tests can also pick up on many other conditions, and can rule a whole lot out.

I understand the frustration of being diagnosed with IBS, but I think it's best if you are prepared that doctors may continue to try and diagnose it until tests show otherwise. Don't take it personally or feel it in anyway reflects on the severity of your suffering - so many people get their symptoms dismissed in this way.

So when i first started feeling terrible i bought tumeric and put it in my drinks and food there is a natural into inflammatory substance in the root... ive heard coconut oil and ginger have anti inflammatory agents in them . I really recommend a endoscopy and a colonoscopy. hope you feel well... also my doctor gave me a flex sigmoid... it can rule out some things but not crohns imo... so if they say flex sig tell them you want more than that... and you want a full colonoscopy. unhappy tummies are no fun