Well I talked to the nurese on the support line and they said they would feel safer talking to me if I had a formal diangoises of IBS. I don't know what my doctor's are up to and randomly I never considered having it formally diagnosed. It seemed enough that I knew, weirdly. Well my doctor when he first examined me said it was stress. The next doctor was like well there's a support group good luck. I guess I could try and talk to my first doctor whom and see if I can get a dignoses out of him now I have had these problems for the second time. This is all rather stressful. Perhaps I will say the nurese at the IBS charity don't feel safe talking to me an dmaybe they will pull their finger out.
Experiences?
Written by
REDLYN123
To view profiles and participate in discussions please or .
My doctor sort of diagnosed me with IBS. When I say "sort of" it was the conclusion he came to when listening to all my details of symptoms, plus three stool tests.
I did share with him that I really really didn't want a colonoscopy unless it was absolutely necessary.
He said that would depend on if any 'red flags' for further investigation were found on the stool tests.
So we ran a FIT test (to test for any occult blood in stools)
And we ran a Calprotectin test (to see if that was raised and that would show if there was inflammation.)
And Lactoferrin (I think that's a similar thing to the calprotectin test. Not quite sure what that was for)
And a blood test. That was all perfect .
All the tests were negative. Nothing found. He then told me a long list of all the things it couldn't be as a result, and said he was 99.99 percent certain it was IBS.
So at least maybe your doctor could run those tests for you. They are fairly easy to do and non invasive. Just a bit messy (collecting stool samples) but you are given a kit with everything necessary to do it as neatly as possible.
yeah I am in an odd place with my doctor. I mean I would have thought they would run these tests rather than me having to ask for them. I am feeling a bit let down at the moment and like they don't care or take me seriously. I mean the first doctor just sent me off to this support group and said there was no test for IBS. I asked for the blood test and the celiac test. I just feel like an idiot now. I know my blood test is normal apart from my bilribun.
Unfortunately it seems to be a common thing now, that you have to do your own diagnostic work up, figure out what the differential diagnoses might be and ask your doctor for the relevant tests... I don't understand why clinicians are not more proactive either, it must make their job quite boring? To be fair the GP that I first saw did actually order a bunch of tests (bloods, faecal calprotectin, FIT test, general stool and urine tests for bacteria and parasites) which were all negative / normal except slight eosinophilia in my bloods which has always been that way - after I wrote a virtual essay describing my history in the online appointment form. I then got eventually referred to gastroenterology but it took a year because of covid. With gastroenterology it has been more a case of me having to ask / push for specific tests and any other follow up, otherwise I suspect I would have just been told it was IBS and that's it.
yeah its the same with my doctors...though my original doctor who suggested IBS actually did see me for angular chleitus? It was so random..I wonder if he was thinking he wanted to help me with my IBS and I would open up in the appointment, but sadly I just got embarrassed and believed he didn't believe me (the infection had disappeared). Another doctor just told me to go to the IBS support group. I asked for a celiac test and got that so I imagine I would have to do the same for the other tests for IBS if I want to go down that road. I found this...ibs-solutions.co.uk/phdi/p1...
I had a Endascope I think it's called (a tube with camera) up back passage not as bad as it sounds ) and as it was inconclusive of anything else bingo IBS And that was it , just left to find my own way , but hopefully things are better organised now I'm talking 20 0dd years ago .
I don't think they are better organised. Do you get these tests done in a hospital? I like my GP but I don't want him putting things into me. Perhaps not even a woman doctor.. Perhaps a nurse in a hospital somewhere with a mate with me in the waiting room.
Yes mine was done at hospital , I'm a coward and don't like showing my private parts but it's really not too bad and no pain and fairly quick ,and at least then you know what it is .
I had my colonoscopy in a hospital - to be honest I had avoided getting my symptoms investigated for years because I was afraid of the invasive investigations. But I found a youtube video online by Hannah Whitton (and subsequently many other people, there is even one by the actor Will Smith!) about having a colonoscopy, where they describe the whole procedure and the prep etc. I found it really helpful and reassuring to know what to expect. I also opted for sedation, which I think helped as well - I really don't remember much at all of the actual procedure and it didn't hurt (that I remember). For me I had just reached a point where I was so fed up with having symptoms for such a long time (nearly 40 years now) and not knowing the cause or having any treatment or management, that I was prepared to do whatever it takes to find out once and for all what it is and what can be done about it. I'm still on that journey, is taking longer than I thought but hopefully will get there.
Unfortunately I didn't get the option of sedation so was fully awake , but tbh I think the worse part was the prep and the disgusting stuff you have to drink to empty your bowels 🤢
yeah wow...ummmm....yeah.....maybe I will just ride around not knowing what's going on in my guts...lo.l...no I will consider it. If it is in a hospital I might be able to deal with the situation.
yeah I am wondering if it is worth the diagnosis as bad attacks have happened as far as I can remember twice in my life. And there are times I am stressed and there are no digestive symptoms or perhaps there were and I had forgotten. There is something going on for sure. But then equally...it is pretty mysterious the gut and all this body mind connection. I guess I sort of eat in a fodmap style now and occasionally I get bloated and have a stomach cramp when I can' t be bothered. Maybe when my digestion goes in a naught again or it starts happening more and more I know something is up and it is time for the investigations.
You sound exactly like me wanting to know , but not with all the prodding and poking , but if it puts your mind at ease got to be worth it , just think of something you like while everything gos on around you , good luck you will get sorted I'm sure xx
yeah god seems kinda stressful - I am going to read the IBS website and spend some time deciding if it is time to change practice or just doctor. I am looking into how to manage patient-doctor relationship etc. Whether we can start again or whether it's best to just move on. Most of the time the practice has been alright, and I don't really need a lot, to be honest, but yeah this has gotten a bit weird. I don't know if I should have just stuck to one doctor with the IBS issue, (probably), or whether I am just normally so healthy I actually have no clue how to really engage with these people and communicate and hence its sort of buggered up for a while.
I think I need to accept whatever happened with the doctors at the moment and that we can't turn back time and say I need the doctor who originally examined me and thought it could be IBS and to have not changed my diet and to be like a normal human. I wasn't at the time, I had other things to think of. What is done is done and if it comes back around and turns out I need a dignaoses, well I will deal with that when I am not stressed and I am ready, I guess.
The past is the past, no point in worrying about it. You could buy a stool test online but why should you and there are so many, and I don't even know what they learn from a stool test and I have had IBS for 35+ years and still haven't figured out what is going on in there, and I certainly haven't had much help from the so-called professionals! Like you say just chill for a bit and read through the IBS Network website and makes notes that you could discuss with one of your idiot doctors! 🙂
yeah- I don't know if they are idiots but they are a different version of human...can I just ring up and ask for an appointment then? I am so confused. I normally just use an econsult and someone calls me. To behonest I have lost confidence in general. I mean no one cares if I ran around paranoid I might be celiac on a PGCE course...we have all done equally weird things. But for some reason I think the doctors are judging me. I guess when the doc guy turned around and said hey you are here now and you were here yesterday what the hell do you want from me now...more or less...I felt judged and embarrassed. But the thing is- he was the one making the appointments. I had a hip sprain and needed to check pain killers, I expected a phone call. I had a thing on my mouth I expected a phone call. Maybe they are paranoid I am a celiac as well. Maybe an excuse to check my bone function and I don't have canker sores.
I mean who cares if I even have IBS or not. If I ask to be tested who cares if they find something else or nothing. I mean why do I care what they think exactly? Not sure why I am so hung up on this exactly. It is not personal. Yeah...maybe it just a crisis I am going through. I suppose there is this 'face' we have to keep of being rational adults with professional and personal pride. To admit to a doctor I wound myself up over my angular chelist is perhaps too much for me, but it shouldn't be. It should just be ok as we are all human and do these things.
there probably is no grand conspiracy there to stop me finding out the truth about my body...its just some random events and doctors are human, to. They aren't at home scheming to avoid testing my poop. To be honest...I don't want anyone near my poop. Sorry I am having a little joke here.
This made me chuckle Like you I am not very familiar with how this whole thing works as I only registered with a GP in 2020... still figuring it out. Many practices have radically changed their approaches to avoid seeing patients unless necessary for a physical exam / to look at something, since covid. It seems to work in different ways depending on where you are. In my practice the default is an online appointment, if you want to be seen face to face you can book one but the waiting list is much longer and you can't choose which doctor you see. In the one my sister attends, they fill out an online form, then have a telephone appointment where it is decided if they also need to be seen face to face or not. So if you can phone the reception and ask them how you book a face to face appointment at your practice and be explicit during the appointment about current symptoms and that you need tests done so that you have a diagnosis and can access support services.
yeah no I feel too guilty I messed up a face to face appointment with a GP whom I actually asked to see in a way...its like... I need to forgive myself. The guilt as well at being seen for something so minor that had disappeared by the time I got there...when i really needed to talk about my IBS...I don't know if I will get that chance again.
I mean even he could tell there was something else I wanted to say if I had shown up without even a mark on my face...I just couldn't cope with how he asked me...and then we went back to just sorting out my face and the opportunity was missed...fuck...kicking myself but then I wasn't ready maybe.
yeah reflecting on that appointment today and perhaps it was just a mistake on both sides. I should ask directly for that doctor to talk about IBS. He examined me the first time and said it could have been IBS but as my symptoms are not ongoing it might be stress. Perhaps I am sort of like on the outer edges of the IBS spectrum. My mother can hardly eat some days.
at the time I spoke to him as well I didn't know that all my mother's line pretty mucn suffer with sensitive guts....so it was a missed opportunity in a way...but equally it is not...this is the journey of life and things reveal themselves over time. Consider I only have a flare up when massively stressed, or stupidly changing my diet...it does seem like perhaps the doctor is not so unreasonable. I think I just need to ask for the diagnoises perhaps...or accept they think it is stress and go somewhere else.
I don't know if you can phone up and ask for an appointment as I very rarely contact my doctors practice. Have you not had a face to face with these doctors you were talking about? Not that it matters now. If you want an appointment face to face then ask for one, they can only say no.
The reason the nurses will ask if you have had an official diagnosis is because there are many bowel conditions all with similar symptoms, but all treated very differently. Without knowing what you are suffering with you will not be able to start to manage the condition you are living with.
Symptoms of IBS indicate a sensitivity and irritability of the gut, which may, of course, be caused by other diseases that irritate or cause inflammation of the bowel. Your doctor will always need to consider the possibility of one of these.
Without a diagnosis from a medical practitioner no one will be able to advise you on treatment and you will not be able to start feeling well again. It cannot be diagnosed over the phone as there are certain tests that need to be carried out to rule out other conditions.
What you can expect at your doctors – Investigations and Procedures Tests are not always necessary Current guidelines encourage gastroenterologists to make a positive
What does this part mean? What you can expect at your doctors – Investigations and Procedures Tests are not always necessary Current guidelines encourage gastroenterologists to make a positive
That does seem like contradictory advice to healthcare professionals? I would think differential diagnosis testing for other conditions is important because all the symptoms that are listed can also be due to many other (treatable) things.
Having a discussion with your GP is always worthwhile in some aspects, but yes you could mention that the IBS Network nurse on the charities support line was cautious on the advice they could give you without having a formal diagnosis of IBS! More so if they've done tests to rule other things out and results are clear then ask them if it is IBS
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Like you I am not very familiar with how this whole thing works as I only registered with a GP in 2020... still figuring it out. Many practices have radically changed their approaches to avoid seeing patients unless necessary for a physical exam / to look at something, since covid. It seems to work in different ways depending on where you are. In my practice the default is an online appointment, if you want to be seen face to face you can book one but the waiting list is much longer and you can't choose which doctor you see. In the one my sister attends, they fill out an online form, then have a telephone appointment where it is decided if they also need to be seen face to face or not. So if you can phone the reception and ask them how you book a face to face appointment at your practice and be explicit during the appointment about current symptoms and that you need tests done so that you have a diagnosis and can access support services.
Not getting better reflux and IBS C
Why am I getting nausea and bloating every morning with my IBS?
ibs is really getting me down
IBS Just getting worse
IBS what can u get on prescription? 
