I honestly don't know what to do anymore... I won't go over everything in detail but basically I started with stomach pain (lower centre) just over a year ago. The pain is there all the time and does not come and go. I also noticed I was more constipated than usual and had frequent bleeding. I had a sigmoidoscopy just over a year ago and I was told it was clear. I've only just had a FIT test which came back as '7'. These are the only bowel related tests I have had.
I've just come off the phone with my GP, they basically will do no more and will not refer me for a colonoscopy. She just said if my symptoms get worse or change let them know. I mean how bad do they want it to get? Everything that I read that suggests on going stomach pain screams colonoscopy, but yet they don't seem concerned. The pain is ruining my life, my stomach is so sore I can barely put any pressure on my lower left side and lower centre, I also have recent pain in the upper right. Despite this the GP and private consultant I saw just want me to take laxatives. They have also suggested amitriptyline for the pain which was suggested about a year ago. I have no problem trying this if I'd have had a colonoscopy and knew for sure I wasn't just covering the pain up.
I feel like going back to see the private gastro consultant and getting on my knees and beg for a colonoscopy. My own family are starting to treat me like I'm insane and I just need to sit or bend differently and it will all go away! If only it was that easy... when anyone asks me if I'm ok now I just say I'm not bad and don't get into anything as I feel nobody really wants to know anymore. I feel completely isolated.
Any suggestions on how I should move forward? Does anyone else suffer constant stomach pain and had a clear colonoscopy?
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RedTeddy
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Yes, I had pain and a clear colonoscopy. In the UK there is a set protocol for diagnosing IBS which is mentioned here:nhs.uk/conditions/irritable...
Calprotectin and inflammation markers indicate whether you need a colonoscopy or not. I am assuming that this all came back clear for you, which is why you are not being referred.
The reason you have been prescribed amitriptyline is that you are possibly suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:
It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.
In fact, I would try Alflorex probiotic or another scientifically tested probiotic in the first instance since pain can be caused by a gut bacterial imbalance with dominant bad bugs oversensitising the nerves in the intestines. If this works, this avoids needing to take drugs. If this doesn't work and since you are on the constipated side you could ask your doctor about Linaclotide, which also calms intestinal nerves and only acts locally in the gut, unlike amitriptyline which acts on the whole nervous system.
Thanks for your reply xjrs, it was very helpful 🙂 I will take a look at the links you sent and also at Linaclotide and Alflorex as I was worried that amitriptyline would make my constipation worse.
I have suffered with a lot of stress over the last year and a half and more recently when my husband left me which I believe was partly due to my being ill all the time🙄I have also had antibiotics at least twice a year for UTI's, so far this year though I've had three UTI's so antibiotics three times already. I've always had an Actimel every day and have tried apple cider vinegar but I think maybe something like Alflorex may be better. I know I have inflammation but it must have been in normal range. I'm glad you've found some relief to your pain 🙂
Sorry to hear what you've been through. If you need to take antibiotics again you can also take Saccharomyces Boulardii alongside them and for a couple of weeks afterwards if necessary. Since Saccharomyces Boulardii is a beneficial yeast it won't be affected by the antibiotics but can help support your microbiome whilst you are on them. Good luck.
Thanks for the tip, it's 7 weeks since my last UTI they have usually been 5 1/2 -6 weeks apart so I'm doing well at 7! I have been worried about taking more antibiotics so anything to help my microbiome recover is much appreciated.
Sometimes you have to be politely persistent with your GP I found. Is there an option to see a different person in your practice? When I first presented with gut issues, I was told 'if something upsets your tummy, just don't eat it'. Infuriatingly patronising. Grrrr... Sometime later, I saw another GP who offered me a referral to a gastroenterologist, while freely admitting he knew very little about gut issues. Maybe try again with another doctor?
Hi BabsyWabsy, well I wish I could 'see' a GP. I haven't seen one in person for over a year. Our practise no longer takes new appointments by phone you have to fill in an online form where it's assessed then put in priority order. I was clearly at the bottom as they thought a phone call appointment in 3 weeks was sufficient.
When I finally got the phone call yesterday they said they were following NHS protocol and would not do any further investigations and just come back if I get worse.... the GP then promptly ended the conversation with 'I've got to go' and a sigh like I was wasting her time, at least that's the impression I got. I honestly don't think trying to contact another GP wouldn't get me anywhere, besides you can't request who you get it's potluck. If I was to try and push for any further investigations I'd probably have more luck with a private consultant, but the last one I saw wasn't much help and plus it's more money.... you can't win x
Oh that is frustrating. Ours has an option of making an appointment on line since they updated their website. It is easier than ringing up for one. I would not be happy to be allocated a random person either. There is one in particular that I refuse to see. I suppose, if you are in constant pain, it would not be unreasonable to call 111 for their advice.
The only one I refuse to talk to at my practise is an ACP (advanced care practitioner) they are basically being used as cheap GP's and my practise is GP owned. On the online form I have to insist I don't get an appointment with an ACP and especially the one lady I have had in the past, she upset me and my neighbour.
As for 111, don't get me started. My experience has been like talking to a robot, when I was severly constipated following an operation they just kept asking questions like 'what does your stool look like' I asked if they were listening and they just repeated the question.... then it usually ends with 'go to A&E'. As far as I'm concerned 111 is a complete waste of time but I'm sure there are people out there who are prepared to wait ages for a robot then a few hours for a nurse, if you're lucky. Oh no I've started.... meditation required lol
I've had revere abdominal pain for over a year now, had colonoscopy CTscans, blood tests etc etc, and they've all come back clear,. I'm at the end of my tether now and don't know which way to turn,. No painkileers help and doctors say they don't know what is causing it.
Hi Edwangy, I'm in the same boat as you, it feels like being on the Titanic. I'm trying to focus on my mental health a bit and am trying to distract myself as much as I can as the pain can be all consuming at times. Pain killers don't help me either. I try and exercise a bit when the pain is more tolerable but then I pay for it in the evening. Breathing exercises and meditation helps a bit, if only to calm my mind as sometimes it feels like they're both out to destroy me. What a life!
It's awful, it's seems to get worse over time. Gastroenterologist has said that it is functional abdominal pain where there is no physical cause and is how the brain interprets pain, he referred me to a functional pain clinic end of April and I'm still waiting. I was told that I had slow bowel transit and a thickening of the colon due to diverticular disease. All these diagnosis yet no treatment at all. I take mebeverine which sometimes helps a bit but I am in permanent pain sometimes more severe the others.
How do you sleep? This also keeps me awake at night as the pain doesn't subside.
The only way I can sleep is if I go to bed extremely tired, I try & do a bit of sudoku in the evening as this soon wears my brain out. I make sure I have my teeth brushed etc so I can literally fall straight into bed & hopefully sleep.
I don't manage this all the time & inevitably I'm awake with the pain often. I'd say my pain ranges from 3 to 8 generally. Breathing exercises sometimes help a bit or I listen to an app called 'Get Sleepy' it helps distract my mind from the pain & usually helps me fall asleep if I'm not tired enough.
At least you've had some form of diagnosis although you're not getting any help for it yet... It really is awful trying to live with constant pain, I hope you get your appointment soon & they can find a way to help you x
Thanks, I don't agree with their diagnosis, I feel like there is some kind of blockage or stricture causing the pain, but nobody listens and they do nothing. I've no confidence or hope in this referral, I feel I'm just being fobbed off again.
It's a waste of time going to A&E. I've been that bad and have been in an ambulance 3 times to hospital. They give you a scan and take your blood, if nothing shows they just send you home with nothing! They are totally disinterested if you're not dying, totally useless.
I sadly have to agree, although I've not been in that situation myself but my neighbour who has been I'll for the last 3 year's (nothing diagnosed yet!) Has been in hospital numerous times via an ambulance. They patch her up & send her home, she's half the person she was, literally. It's so sad & frustrating.
Hello RedTeddy, i been suffering from abdominal pain for the past 2.5 years. My pain is located 2 inches below the end of my sternum. Its always there. Few times it goes down or up in the pain scale but always there. I have tried nortriptolyne for six weeks but it did not help. Probably needed to take it for a longer time but I did not feel a difference. All CT scans, blood, stool, endoscopy, come out clear, nothing shows. I modified my diet and have found no slight relief. The one thing that doesnt make it worse is to eat small meals. Most likely my issues are from stress, since Im easily stress out. I know that feeling of people ignoring you because they dont believe you. Hopefully we find a way to get better.
I'm sorry you're in pain too 🥺 coming on here is the only place where you feel you can talk about things as nobody else really understands. I tend to go from a 3 to an 8 for pain, just now I'd say it's a 4 so I'm trying to do a bit of gardening as my husband left me at Easter so I now have everything to do. It may be an 8 later! I have noticed that if I eat a larger meal I feel worse. The other day I didn't feel like much for dinner so I had something light & I have to say I felt better for it. I will make an effort to eat smaller portions more regular & make my last meal a little earlier & see if this helps. I hope we find a way to get better too, just have to keep on trying 🙂
If I was you I would put in a written complaint about the level of care you have received from your GP practice. There will be details on their website and probably a form to fill in. Tell them what you have told us. Someone should sit up and take notice and come up with a plan going forward. I got to the stage where I could only tolerate fluids and smoothies, no solid food, my gp practice offered me an appointment in a months time and said I would be fine as long as I was taking in fluids !!! I filed a complaint and got an appointment and a referral. Try it. You have nothing to lose. Gp’s have a lot to answer for.
Funnily enough I do nto have any pain but I do take a sachet of laxido every day to combat constipation from taking other meds. Would this show blood in my stool? I do have my bowels opened every day and it is a soft stool
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