Every now and again I get things in my head where I think could this be more than IBS. I think even more so with all the bowel C symptoms going around.
I have tried everything that has been recommended from food diaries, supplements, probiotics, laxative (all different types) gluten free diet, lactose free diet, different medications etc and nothing has helped me.
Every day I have stomach ache, popping noises in my stomach, trapped wind to really loud passing wind, burping etc
I seriously don’t think I can spend the rest of my life like this it’s not normal am so un happy. I also know being depressed and low in mood can cause gut issues but it’s taking over my life well I don’t have a life. All I ever think about is pooing and my stomach.
I just don’t know what else to do, I feel I want to go back to the doctors but I just get palmed off again with it’s IBS and cause I have had the test which come back negative they won’t send me for a colonoscopy which I find frustrating as I feel that would at least tell me if I need to worry.
More and more people are being diagnosed with the Big C of the bowel when initially being diagnosed with IBS.
Please advise where I should go from here, I don’t know how much more I can take. For those who have suffered years and years I really don’t know how you have managed.
As I write this I have terrible stomach ache feel I need to pass wind and poo but I can’t.
If I just had a flare up that lasted a few days then I was normal again I could live with it but it’s day in day out I don’t get a break.
Sorry for the negativity am just so low.
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Bassem1979
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Has anything changed since your last post (about 20 days ago)? I know we suggested a colonoscopy then. Perhaps you go private or ask for a different physician. (Not sure how all that would play out, as I'm in the US.) Any look into therapy?
Not sure what test came back negative. Here in he US we can get a colorectal cancer test on our own without a doctor's script. Of course we do have to pay for it but here it's 89$ so no all that expensive. Do you have that over there. You might be able to get a test from them here. Their web site is Ques Diagnostics. Good luck
You can't help feeling negative in an IBS flare! I do know, because I feel horrible during one too, and sometimes a bit scared and anxious.
If there's anywhere you can vent about IBS, it has to be here. We understand.
Dark feelings and IBS....what comes first, the chicken or the egg? In my own experience, when my gut acts pretty normal, I am fine and don't generally have anxiety. But when it does, it's like my own personal tiny version of hell. It makes me anxious and upset. Being thrown back into it continually gets to me too. I can go days to weeks, to once even two months or more without it, then it comes back at me, and often for no discernable reason, just because it can!
That is very discouraging and disheartening for anyone to have to keep going through.
Non -IBS-ers don't really know what it's like. It's like having attacks of food poisoning or a bad tummy bug on a regular basis. It can often feel way worse than "just IBS".
I don't generally have extreme 5-second type of urgency, or accidents, but for those who do, it means it's hard to live their lives at all. That in itself is deeply depressing.
And poop problems let's face it, still have a bit of stigma attached. Socially it's more acceptable to have a broken leg.
I think IBS can definitely cause health anxiety. There are so many horrible conditions scarier than IBS which have similar symptoms, and that doesn't help if we are anxious.
There are certain different, discernible signs though of bowel cancer. If you have had stool tests which show there's no hidden bleeding, that's a good sign. I imagine the doctor did the "F.I.T." test for you? That does pick up the slightest trace of blood in the GI tract and is very sensitive. Even a bleeding gum from brushing teeth too hard would show up positive on that test.
If you've had a colonoscopy or biopsy which shows "no C", then that's the best possible good sign. Your doctor really ought to refer you for a colonoscopy if that is what would set your mind at rest. It is their duty, I think if you feel you need hard evidence.
But pain, bloating, bad flatulence and bad bowel movements are not necessarily a sign of cancer at all.
Take care. I am sure your bad flare will ease up in a day or two. I hope so. Eat very bland foods easy on the tummy.
Hi, maybe I already did mention it but has any health professional ever thought of you having atypical cystic fibrosis? Do you know if any member of your family including cousins has 'similar' health problems?
I feel exactly like you, I've had constant stomach pain for over a year now but yet am still being refused a colonoscopy by my GP. I have paid to see a private gastro & he just follows NHS protocol & also refused to do a colonoscopy even though I was willing to pay (around £1500). My hair started falling out in April due to stress & worry, I practically begged my GP & told them how the worry of not knowing what's going on was affecting me, but she couldn't wait to get off the phone & just said to let them know if it's got worse. I said it was significantly worse than a year ago but they just don't care.
I have no life now, I had to go to a long awaited event on Saturday evening which was originally booked in 2019 but due to COVID was delayed. I was determined not to miss it. I had been in pain all day & pain killers don't touch it, I went anyway & tried to smile my way through the evening despite the pain. I couldn't wait to get home, I walked through the door & just burst into tears, I felt so down. I feel completely abandoned by the doctors & I just feel like everyday I'm just waiting to die. If this is my life now I don't want it. Sorry for the super negative attitude, I wish I could help & tell you it will get better, I used to think that but I've now given up all hope x
Your reply to Bassem1979 really touched me as it reminded me of what I've been through. 30 years of utter failure and uncaring attitude by the gp services I've used. Now not only do I have Ibs, I have Diverticulitis which is worse than the 2 labour's I had with my children. I got depressed and angry. I knew I'd make the gp see me so began writing down my symptoms, diet and exercise. When I had the telephone consultation I admitted to the gp that I felt suicidal at 30 years of dealing with this and having to now wear nappies daily as I have the combined form of Ibs. I said I couldn't afford them and had no social life as my friends and family were disgusted, which made me feel worse. He thought it was fantastic that I'd written it all down and said all gp's wished patients would do that. I was referred to the Urology and Colerectal Service as now I'd began wetting myself he thought was due to stress. After 3 weeks I'm amazed at the difference. I actually have a slow gut transit which means it gets stuck, I then get constipated badly and very painfully, then comes the never ending diarrhoea. (Maybe I don't have Ibs 🤔)The nurse said I was backed up to the top of my ribs and full depth of my body. I just cannot believe that she said it was malpractice what all the gp's had neglected to do as I should be in hospital due to the severity of the situation. I was asked, told, threatened with an ambulance and the mental health act to go into hospital by this nurse and she called me every 2 days begging me to let her arrange it but we argued and I always refused. I did apologise to her in the end though because I knew she did care, bless her. Not sure until next week what is next as she prescribed 2 tablets (forgot the name) for me to take as well as the laxatives I already take. Maybe this is me for the rest of my life, I don't know but she's warned me that the gp should check or review at least x2 yearly patients with Ibs or bowel issues. Hope this helps. All the best 😍
Oh Evonne02, you've really been through it, I really feel for you 😳 it really shouldn't be like this. I'm so depressed, the dr's don't realise what they're doing to our mental health. When I paid to see a private gastro consultant I went in with things typed up for him thinking it would be helpful, he just cast a brief eye over it & looked at me like I was a hypochondriac. He actually made me feel embarrassed that I had gone to the trouble.
I won't give up I have to keep trying, it's my life & my body. I really hope you start feeling better soon at least you have some answers & can now get the right treatment plan to help you, keep going & look after yourself ☺️
I thought I had IBS for years but it turned out after a very severe attack which I ended up in hospital I have diverticulitis. I now know I have to avoid acidy foods such as citric fruit, chocolate, onions, also nuts are off the list. I can't eat dairy anyway or gluten. But I manage and seem to have avoided a serious attack for a few months now. Ask your doctor to give you a colonoscopy and an endoscopy and say you will report him to the BMA for negligence if he doesn't.
I could have written this, I also suffer pain and constipation 24/7 and have had every test going, CTs, bloods, colonoscopy, bowel transit time, etc etc. They couldn't find anythingrxcept slow bowel transit. No medication helps and pain killers do nothing. I'm just left to get on with it
Hello,I totally understand how you feel.I have had ibs for 24 years now and at times have felt completely hopeless with it.I had all the tests a while after it started which were fine but every now and then I feel it could be more than ibs and wonder if I should have them done again.I would maybe see a different doctor and really press for a colonoscopy which would put your mind at rest and possibly ease your symptoms.I really feel for you and you are too young to be feeling this way.Very best wishes to you .xx
So sorry to hear you are having a bad time. I have had IBS for over 30 years. It does get you down especially as there is no cure and we are left to "manage" our symptoms. My Dr has said for years "it's only IBS" I watched a programme embarrassing bodies I think it was series 9 ep4 with a patient who had wind problems and was shocked to hear that honey causes wind and fruit with stones I was not aware of that. I take Symprove which has reduced my stomach issues but it still gurgles and gets a bit bloated and have flare ups. People on this site do understand which does help. Take care x
Hi Bassem , you are in the same boat I was in couple of years ago . The pain and the not knowing what was wrong with me made me suicidal . I made many calls to my gp who prescribed me things that never worked , it was only by putting my foot down with them that they took me seriously . So I know where you’re coming from, I would insist to your gp for a ct scan with contrast at least to put your mind at rest . I would not of got through it all without my friends who kept me going . You could try to get in touch with your gynae consultant and ask how long the zoladex takes to shrink the fibroids as that could ease your symptoms . Wishing you the very best and I hope you get some sort of resolution x
Same here I’ve had symptoms everyday , but now my gallbladders been taken out I’m hoping the ibs will calm down a bit . Will keep fingers crossed for both of us ! X
Did you contact the GP after you last posted ?Or did they refuse to refer you to a gastroenterologist at that appointment?
If you are in the UK you have the right to ask to be referred to a gastroenterologist to confirm your GPs diagnosis and get a more detailed assessment of your symptoms to be sure that there is no obvious disease or illness causing your symptoms.
It's actually important for them to do this automatically if you have a family history of bowel diseases or bowel / stomach / liver or pancreatic cancer.
If you politely , but firmly , remind your GP that this has been going on for sometime and that you would like to request a referral to Gastroenterology for a consultants opinion , as is your right to request , they will see that you know your right as a patient and can't really refuse you.
If they do , again politely ask , why they have refused this and then tell them that you would therefore like to see another GP at your surgery for a second opinion.
They are more likely to grumble under their breath but refer you rather than have your complaint heard by another doctor.
You could also ask your GP to refer you to your nearest Bowel and Bladder Clinic for assessment and therapy.
A lot of GPs don't even know these exist or that they can do the referral!
Or, check if you can self refer to your local Bowel and Bladder Clinic by looking up its details on the net.
Your Hospital Consultation may take time , especially under current circumstances , as you condition will not be classed as life threatening. If you haven't heard anything to show the referral is in process within 3 months contact the Hospital appointments desk to enquire what has happened.
Be well prepared with notes for a consultation with a list of your symptoms , things you have tried that did not work , things you are on now and which tests you have had at the GP that came back negative ( you can get copies of your blood test results from the surgery by request).
They may still not give you a colonoscopy if they don't think it is appropriate after a physical exam.
Hi my heart goes out to all you long suffering IBS sufferers, like wise I have had years of trying to cope with mainly IBS D not a pleasant thing to deal with but I am alive and kicking I had a severe bout just a couple of months ago but I am getting better by the day still having the odd days of anxiety but coping well, the turn around from going at least 8 times in 1 day to nearly just once to 3 times a day and iput it down to a product called Regucol from Holland and Barrett it's been nearly miraculous for me maybe try you have nothing to lose and I had a colonoscopy recently been told I have diverticulosis but gp has ever been in touch good luck to everyone because you all deserve better♥️💖👏👏👍👍
Thank you everyone for replying it really does help when you know you not a lone I have an exam Thursday morning and then am going to ring the GP again and demand further tests and referrals can’t cope any more.
People keep saying am losing weight too which makes me stress more and worry.
Do remember that a lot of physicians don't think about the possibility of atypical cystic fibrosis (CF) as the root cause of your chronic gastrointestinal symptoms, problems with your digestive tract.
Although (atypical) CF is a rare genetic disease it's possible, especially when you have long medical history (as I have), that you're genetically predisposed. I think you should at least mention it when seeing the consultant, give them something to think about.
Next week I hope to get a blood test to rule out or confirm (atypical) CF as underlying disease.
Yes your story is very similar to mine, we have more or less the same complaints and I am at the end of my tether with it all, Doctors are not a bit interested and I think anyone with Ibs is a hypercondriac mine is worse than when it started over two years ago, look at my post above I go under the name of Lamly.
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