Trust my diagnosis of IBS or could I have Crohn's Disease

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Hi All

I've not been right for three years now and my doctor has diagnosed me with IBS, along with Fibromyalgia and CFS, however I'm having a really hard time convincing myself otherwise. The reason I suspect Crohn's Disease was during a routine stool test for blood, which was also tested for faecal calprotectin, no blood was present in my stool, however I had a >300 faecal calprotectin result. A follow up test a couple of weeks later produced the same result, raised calprotectin but no blood. As a result of this a colonoscopy with biopsies was booked, which I had a few months ago. The results of this were fine, the doctor doing the scope said my rectum, colon and terminal ileum looked very healthy and my biopsies came back normal, the only thing found was haemorrhoids, and as a result of this a diagnosis of IBS was confirmed.

I can't convince myself this diagnosis is correct, I still feel like there needs to be more investigations done. Generally I always feel slightly ill, I get lots of bloating and abdominal and chest pains, feel weak, drained, sometimes lightheaded. I have a bowel movement every 3 days like clockwork and it always looks normal, however there has been mucus present sometimes and I have had blood present on my stool, or on the toilet paper, although this only happens rarely.

When I questioned the diagnosis with my doctor he went through all the tests I've had done, and told me with the pleasing colonoscopy results, the fact that I'm not in more constant severe pain, illness and distress, the fact I'm not loosing weight and the normal results of all the other tests I've had done, and there has been many, he had no reason to suspect Crohn's Disease, however he could give me no reassurance as to why my faecal calprotectin results were positive, he just said it's not a definitive and quite vague test and probably just one of those things. He also then told me that during the last two and a half years I've had 12 blood tests, all looking at various things like liver function, celiac disease, autoimmune disease and HIV, but each one has had a CBC done at the same time. He then said if I am feeling ill all the time caused by Crohn's Disease, then the law of averages would suggest that at least one of my blood tests would show markers of inflammation, raised white blood cells, but I've had 12 tests that have been fine. He finally said that my symptoms do not fit typical Crohn's Disease symptoms, especially as during a day I can go from feeling ill to feeling ok in a matter of hours.

I'm sorry to have waffled on so much, but I want to be as sure as I can that I should accept this diagnosis and try to move on with my life as best as possible. I'm just wondering what any of you would do in my situation? Would you accept it, or are there other tests that I need to push for to be 100% sure?

Any thoughts, views or comments would be greatly appreciated.

0 likes, 14 replies

14 Replies

  • Posted

    Perhaps it’s something other than chromes . Ask for a ct scan or capsule endoscopy or other mr defegraphy to look further. If you don’t feel right than keep requesting other tests. Go to another doctor if yours says all is fine. You know how you feel. 
    • Posted

      Thank you for the reply Nancy.

      I've already had a second opinion from another doctor, as well as seeing two Gastroenterologists, a Neurologist and a Rheumatologist and all of them seem convinced my diagnosis is correct, no matter how much I say to them that I really think it is something else. I don't know what else to do??

      I have to say that I don't feel really bad all the time, I just have this general feeling of being slightly ill, with the odd two to three hour moments of feeling quite bad. Up until two weeks ago I actually had a few week period of feeling fine, but then the general illness kicked off again.

      I just feel totally lost, but I guess that's quite normal for someone who has had so many tests with nothing ever showing up, yet feeling ill almost all the time.

  • Posted

    R u taking probiotics and keeping on a good eating regiment? The ruled out gluten as a problem? Try a gluten free diet and c if that helps. 
  • Posted

    I would keep pushing for answers Paul. I was ill for years . Seeing a gastroenterologist all that time. Had regular colonoscopies. Last one 4 years ago. Said diverticulosis but not bad.Since then really unwell, he kept saying IBS .couple of episodes of illness. Nothing on blood tests. Culminated in massive infection last year from diverticulitis. Hospital 7 days. Kept saying I still wasn't well. Cut a long story short, made him refer me to surgeon . Abscess and a huge grapefruit size ball of inflamed material. Now temporary bag which will be reversed in 8 weeks. To let it all heal. I know it's a different story from yours, it's not crohns. But my point is do not be fobbed off if you are not feeling well. Trust your body. If gastro doc had listened to me  I would not be in this mess. See someone else. 

    • Posted

      How could that have been missed? It didn’t show up in colonoscopy but y? I am going though my undiagnosed situation and have an anal rectum surgeon doing tests.  MR defegraphy next then another colonoscopy. It was at my insistence he’s doing other tests than finger up the butt. Now I am wondering, how could they miss what you had?!
    • Posted

      Because the gastroenterologist wasn't listening to me. Everything is ibs! I've been ill for 2 years. We must push when we know something isn't right. Surgeon sa it took him 3 hours to sort it all out. I will not be going back to that gastro guy again. I hope you get your problem sorted out .

    • Posted

      So sorry to hear about your experiences Rhiannon, that sounds awful that something so big was missed and it's reading stories such as yours that almost convinces me that there must be something else going on inside me that hasn't been identified. But how far should we take it before we do actually have to accept our diagnosis. At some point I'm going to have to accept my diagnosis, and considering the extensiveness of testing and investigations done on me over the past 4 years, should now be the time? With my way of thinking I'm just stuck in limbo at the moment, and I need to try and move on.

      I have a friend who has Fibromyalgia, my sister in law has CFS and a friend of a friend has Crohn's Disease, and none of them can understand why I am not in more pain and discomfort. I know there is something not quite right, and everything seems to be centred around bloating, which is seems to be causing the most pains and discomfort. However, I'd say 90% of the time my symptoms are very mild with a very slight, underlying feeling of being ill and lightheaded. I also know that I now have a phobia of eating, and have settled on very few foods that I know I can tolerate, so I'm lacking in plenty of vitamins, minerals and fats needed in a healthy, balanced diet, I'm sure that isn't helping.

      I would get another opinion, but this would then be my fourth then, and I don't see how this opinion will be any different to the others, the other opinions just looked at my results and notes, and together with my symptoms, couldn't suggest what further action they could take. I'm just so stuck as to what I should do now, the only plus I can think of is that my symptoms aren't getting any worse.

    • Posted

      It does leave you In an awkward position Paul. I must admit that my symptoms were making me feel really ill. There was no doubt in my mind there was something wrong. I didn't seek another opinion either until I was finally sent to the surgeon ( through necessity) .  It does seem as though you have had all of the tests. If your diet is restricted, a multivitamin could help? I really feel for you. There is nothing worse than not feeling well. I wish I could help. Keep us posted.

    • Posted

      Thank you for your sympathetic words Rhiannon, I really do appreciate them.

      I thought I’d let you know I got my third opinion today, and again was told they don’t see a necessity for any further investigations into my symptoms, my current health condition level, symptoms and mainly normal test results suggest my diagnosis are correct. The doctor told me that the positive faecal calprotectin results could be something and nothing, but the fact my colonoscopy and biopsies were normal suggests I don’t have an IBD. She actually said she doesn’t like the test as it is very non specific and sensitive, and means a lot of patients are being put through un-needed invasive procedures for no reason, adding more stress to the patient and increased cost to the health sector. She is a firm believer in alternative forms of treatment, which I though was strange for someone in the medical profession, and has actually suggested acupuncture as a form of treatment. On top of that she suggested some form of very light hydrotherapy to start exercising, but not to participate in any graded exercise therapy that a lot of doctors will suggest to Fibromyalgia patients, she said it makes you worse and has although it helped some, it has actually worsened symptoms in most.

      So there you go, another professional telling me to trust my diagnosis, does it make me feel any better? Not really, I think there’ll always be a part of me that will struggle to accept this diagnosis.

    • Posted

      Sorry Paul. So frustrating I know. Ironically, I live in Australia and my surgeon said the feacal test you mentioned is how they diagnose bowel disease here now. I was concerned they didn't see anything in my bloodwork  and yet I had an an abscess. He said if they had done the test they would have known straight away there was something very wrong , even though I don't have crohns or ulcerative colitis, he doesn't really go by blood tests at all. I was very interested in that. I know how frustrated you must feel, I went through all that as you know. I agree she had some strange ideas! No natural therapy would have cured me!also I was a fit active slim 62 year old , the opposite of what they used to say was a diverticulitis candidate. They just don't know enough about these things, iim convinced. Please look after yourself and let us know how you are feeling . 

       

    • Posted

      Your comments are the reason why I don’t, and can’t accept my diagnosis Rhiannon, you don’t usually get positive test results for no reason. Here in the UK and I have to rely on the NHS, which at the moment always seems to be in the news. Overworked and under funded, longest waiting times ever, mis-diagnosis, it’s a pretty sorry state of affairs concerning health care here. I would be tempted to go private, but I don’t work anymore due to my illnesses and I don’t want to start taking money from the small amount of savings I have managed to put by.

      Right now I feel like a time bomb waiting to explode, yet without the timer, I’m just waiting for that day when something really doesn’t feel right, or something serious kicks off that requires immediate hospitalisation. I sort of wish it would now, but there is no guarantee it will, and means I’ll could well be waiting for the rest of my life for something to happen. As I said before the symptoms from my conditions are generally very mild and maybe I should be grateful for that, there are people out there in a far worse state than myself.

      I’ll definitely keep you posted on any new developments, in the meantime, thank you all for for you comments and all the best to you for the future.

    • Posted

      Hi Paul, i've not got much to add but just wanted to say how shocking the NHS is.

      I've been unwell with stomach problems for nearly 20 months. I've had to fight and push for everything and to be honest everything means pretty much nothing.

      My GP fobbed me off for over 6 months until i finally got a referral to a gastro  but he was as obtuse as my GP. He ordered a chest, abdo and pelvis CT scan and then tried to discharge me. I've got nowhere since and i've asked my GP many, many times why i've not been asked for a stool sample but he just looks at me like i'm an idiot. No colonoscopy offered, nothing! I just can't get through to these people.

      I'm a member of a few other groups and you would not believe how many people are paying private for various things as many waiting times to see a consultant are 6 months +. 

      My 16 year old Nephew was fobbed off for a long period and his Mum  had to get nasty with the NHS to get the tests and it turned out he had crohns.

    • Posted

      Same here matt. I live in Australia and my husband and i have private health care. Its expensive, and sometimes out of pocket expenses and we are not well off. My hubby still works, i dont. Our local emergency dept is geared towards druggies and dropkicks. I hate it. Waiting lists for specialists are ridiculous. We are in our 60's and we will hang onto it as long as we can, especially with my battle with diverticulitis. Shouldn't be necessary but it is.

    • Posted

      Hi Matt

      The health system is a very sorry state of affairs, I know I'm not working now, but for almost 30 years I worked in some of the crummiest jobs you could imagine, 12 hour day and night shifts in a rat infested feed mill, constant late shifts in a processing dairy, and for what? Just for all the money I paid in taxes to be not given the treatment I feel I deserve, maybe not even deserve, but need. I personally believe that if all the money I paid in taxes was put to one side for my health care, I would have accumulated enough to pay for colonoscopies, endoscopies, MRIs, blood tests, everything I need to ensure there isn't anything severely wrong with me, with money left over. I worked out that during one of my jobs the government would have accumulated roughly £7200.00 in paid taxes over a 2 year period.

      Now I get the feeling my doctor can't be bothered with me anymore, I'm pretty sure that's the impression I get from him. My appointments with him seem like a hassle, and because of that I've decided to make a formal complaint to the NHS, where that will get me I don't know, but I'm just so fed up with the whole process.

      The irony is, I have a serious belief that it was the actions of my GP surgery that have caused my problems. I was showing signs of upper GI bleeding (probably stomach ulcers) with dark, tarry stools, stomach pain, nausea, heartburn and indigestion, which were on my medical notes from previous appointments. I then developed a back pain at work that gradually got worse during the day. I tried to get into the surgery but they were fully booked, which they are most of the time, so the receptionist asked if there was something she could do. I explained the situation and she said she would get back to me. A few hours later I got a call back to say a doctor had written up a prescription of Naproxen for the back pain. I picked it up thinking nothing of it, within a day of taking Naproxen the top of my stomach felt like it was being ripped apart, it was pure agony. It went on for a day or so until I couldn't take the pain any longer so managed to book an appointment at my surgery with a locum doctor. He looked at my notes, checked me over and immediately told me to stop taking the Naproxen and put me on Omeprazole. During the appointment I asked him if back pain / injury can cause stomach problems, he told me no but stomach problems can cause back pain. He then told me that being prescribed Naproxen with upper GI bleeding, likely to be stomach ulcers, without some sort of protection for my stomach was a "recipe for disaster" in his own words. Ever since then I've never felt right.

      I guess I should count myself lucky that I've managed to at least have an endoscopy and colonoscopies which both have shown nothing out of the ordinary, but there are other parts that need checking, but as I have my diagnosis of IBS, that seems to be enough for the doctors. Until something really bad happens I have this feeling this is going to be my life.

      I do hope you get somewhere with getting some investigations under way for your problems, I would say there is always hope, but even that seems to be running thin.

      All the best.

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