After years of seeing my GP about my symptoms and trying lots of different types of tablets, I’ve recently been told ‘there’s nothing the nhs can do for you until you try the anti-depressants’.
They won’t refer me to a gastroenterologist about persistent bloating. I have severe abdominal pain a few times a year but it stops everything in it’s track and no pain relief stops the pain.
When the pain occurs it’s so painful that I can’t stand and have been tempted to go to A&E on several occasions.
No patterns with stools. Stool tests completed several times. Blood tests requested and all seem to be normal levels, until recently when I had a ‘flare up’ and had bloods taken 2 days after the week long ‘flare up’ and they have come back showing liver ALT results are over double what they should be. They requested repeat tests 4 weeks later - ALT are back to normal but AST is now raised.
The GP said it’s nothing to worry about and is not linked to your stomach/IBS issues.
They won’t refer me for any scans or cameras as I’m ‘too young’ yet my mother had stage 4 bowel cancer in her late 40s and no symptoms besides pain but the same doctors surgery did not pick this up on any occasion.
Only option which has been suggested now is that I try anti depressants and if I do not try them and I quote what is said on my NHS records - ‘there is nothing more the NHS can do for you’.
Anyone else been in this boat?
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Blue92
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Very sorry to hear your plight with doctors. I have no solutions for you but a few of questions. If you are too young for a camera why do Gastros have paediatric scopes? Did they take note of your mums diagnosis? Is this pain and bloating worse around period time? Hope you find some answers and peace🤞
Thank you and exactly that - I’m early 30’s and that’s classed as ‘young’ in some medical aspects but ‘old’ in others … I’ve had to remind them on several occasions about my mums health and I’ve now seen 2 GPS at the same surgery who have said the words‘nothing more we can do on the nhs’.
So now thinking of going down the private route but the GP didn’t like it when I said that.
Just don’t see why we should have to pay privately to actually get somewhere. Frustrating.
Yes it is frustrating especially when the NHS is under pressure all the time. For the very last time I am going private to see if I can get any peace with my gut as unlike you I have more history that future😁.
Hi there Blue92- if your IBS is anxiety driven like mine is, an anti-anxiety drug may very well help you- My internist started me on Sertraline which is generic Zoloft-started atsuper lose dose of 25 mg and now at 50 mg which is working miracles- my bloating is 99% gone and I can sleep at night without waking up 6 times and not being able to go back to sleep quickly- You do need to be taking it for 5-6 weeks at least before it can have the maximum effectiveness- it has very few side effects and it may be worth a try for you-also I now eat small meals 3-4 times a day -my IBS is mostly stress/anxiety driven and a can eat most foods -I hope you can try something like this to help you
up to you but if you go to a private doctor they will probably tell you the same thing- i was willing to try anything to get relief but we are all different-why are you so agsinst trying an anti-anxiety drug ?? just curious
Have you thought of making a complaint to your GP and as well report them to the Care Quality Commission they are Regulator for all GP surgeries. If you’re in pain a GP cannot ignore or fob you off and say NHS can’t do no more.
I haven’t no, but was considering if a private consultant states it’s something else then to get a solicitor involved. Thank you for this suggestion - I hadn’t thought of this.
If you are considering making a complaint to the CQC, apply for a copy of your medical records first, it might help you make a better case. It also might be worth agreeing to the anti depressants and at the same time ask you GP for a stool test, just to calm your fears. The GP can't really refuse if he/she is prepared to give you anti depressants and the worry of a potential bowel cancer is part of your medical problem. Just a thought. Good luck.
Is there another clinic in your area? If so, book an appointment with another GP and get a second opinion. I feel your GP is wrong, and another doctor might be helpful. See what happens there before going private maybe. You have a right to a colonoscopy or scan if you feel you need one to be sure about what's going on.
Thank you. Sadly the second GP said exactly the same as my first GP and in both words and on my notes ‘there’s nothing more we can do for you on the NHS’ which is very frustrating to be told and read. The second GP wouldn’t listen when I said I didn’t wish to take the antidepressants and tried 4+ times going round in circles, but according to them that is the last resort.
Many I believe. I guess they'd need a strong reason to look for something physical in your colon; IBS doesn't display anything physical of course, you 'just' get symptoms. So yes, the route would be GP, gastro specialist, possible investigations (bloods, stools, scans, 'oscopies) then dietetics, CBT and non-medical actions ... and that's basically it. Gastro and GP may have ideas on medications. Some say amitriptyline works for them, others mirtazapine (former for me no, latter seems to be yes, lots about these on this group). You could get a colonoscopy privately of course (pricey but might be worth it). For the pain, which can get pretty nasty, paracetamol and a bit of codeine.
Thank you for your reply although if codeine and pracetamol relived it, that would be very helpful although it doesn’t touch the sides when the pains there.
Yeah, I get the not touching the sides bit; no point trying (2P+1C) when it's too bad, just brings you closer to the limit on 8P/day each and codeine can cause constipation although I never noticed. There's nothing else to take at it's worst, if you get that a lot , my sympathy, you could get referred to 'pain management' (just watching Dopesick on Disney+ at the moment actually ....ooooh).
I haven’t looked into this - I’ve already spoken with a dietician and we’ve tried low FODMAP, eliminating foods and I was dairy free for 6/7 years. What is a qualified nutritional therapist please?
A Nutritional Therapist delivers personalised treatment based on nutrition and lifestyle thus maximizing your body's ability to overcome disease. Besides being qualified, they should be approved by governing body BANT (1st link below, both should help find a suitable practitioner).
I can't recommend dieticians because:
1. I have personal, bad experience
2. Their governing body is "financially influenced" - links available, on request.
I don't know the regulation details but my personal experience and that of others is that they basically act as an extension of the NHS. And, as indicated, they are tied financially so vested interest re their advice (links available).
I would ask for a second opinion, and go to a&e next time because if you keep going they will have to test you for everything,it does sound like you may have gall stones??,as the pain you are explaining does sound similar but I'm not a medical professional so please don't take my word for it,I have had lots of experience with medical conditions myself and have had plenty of surgery and medication, please take care of yourself and I hope you get help soon ❤️
Thank you for your recommendation and someone else mentioned above about a trip to A&E too, so I might just go next time it’s painful and see as I’ve previously put it off with not wishing to ‘waste nhs time and resources’ but I feel like im getting no where and im convinced it’s not IBS. Thank you. Hope you are feeling much better now too!
Side effects of low dose amitriptyline are very few. Ibs can come and go. I say just try it, you never know it may just help. What have you got to lose. I didn't like the thought of starting steroids but I felt so poorly at the time I just wanted something to help, I was beyond caring about the side effect. They made me feel so much better and I was almost my old self again, more energy, no sickness and no diarrhoea. Win win
Steroids and injections I’m fine with but going on antidepressants when I’m very clearly not depressed is not for me. I’m pleased it works for you though and it’s great you’ve found something which works!
There are others and antidepressants at low doses are good for pain in some cases. However everyone has a choice, I'm only saying it maybe worth a try as they do work for a lot of people.
Everyone reacts differently to medication. I found amitriptyline to be very helpful with pain relief and didn't cause constipation. I was nervous about taking an anti-depressant when I wasn't depressed but my doctor very carefully explained to me that in small doses (5mg - 25mg) it's actually a muscle relaxant, not an anti-depressant.
so sorry to hear, Im afraid the strain on the NHS is terrible these days. I have spent 40 years of my life working in, alongside, researching the NHS, as a social researcher, and if you can afford it, I would go privately , ive had to many recent ailments, and yes it may just be IBS, but it is your body, your know it better than anyone , I had investigations in my 20s for a range of gastrointestinal things, any evidence of parasitic infection? They should be willing to refer you privately , most GPS are, take care I feel for you
Thank you - Yes, strongly considering private and have been looking into paying for a private gut health specific consultant. The NHS are fab when there’s an emergency and everyday basics, although I personally feel when it comes to anything more there’s no resources available. It’s just a shame. Knowing what I know now, I’d have taken out private health care 10 years ago. The second opinion gp said ‘I don’t think it’s a matter of NHS/Private’ in that consultation and she said nothing of it. So who knows.
Two things; one is that the GP's are making a direct link between the gut and the mind which is why they have suggested trying anti depressants. However, do not even think about going down that route until you have had a colonoscopy to put your mind at rest because of your mums Stage 4 bowel cancer. You will have to pay in the first instance to see a gastroenterologist. They almost all work both private and NHS so look up some who work at a hospital that is local to you (the hospitals website will have all their names for gastro dept). Then look up your nearest private hospitals - cost will be about 200-250 for a 30 min consultation but worth every penny if you explain about your mum not having major symptoms with stage 4 cancer and your symptoms that are ongoing. They can actually fast track you if they think it necessary for a colonoscopy (possibly only if they know you have blood or weight loss) but it is what I would do. I am speaking from experience although I have had IBS 25 years but also have patchy pancolitis and GP refused to send me to gastro in summer 2021 so I paid to see someone! Hope you get some answers!
Thank you for cementing my thoughts of going private at this stage. Yes, I don’t believe the pain is associated with gut-brain-axis as there is no link at all with stress/anxiety for the severe pain. My mother is in recovery now but does still suffer with microscopic colitis. I hope you are okay!
oh sorry I thought you went. I advise you when you have severe pain like this go to hospital. Bz gps they don’t help in this case
It happened to me I lived with dizziness for 3 years and lots of scans and blood tests and the results was negative , it sounds good but still it’s so annoying . Then I noticed this dizziness was from ibs even though my gp told me ibs doesn’t cause dizziness but I was sure bz I get dizziness when my ibs flare .
And like u said medication most of the time don’t help .
Did your doctor run stool calprotectin and check for blood inflammation (CRP levels)? If so, were these normal? People are only referred for colonoscopy if inflammation is indicated via these types of tests. Clinical studies were conducted some time ago that proves that it is safe to use these markers to indicate whether further investigation is needed. This has saved lots of people having a colonoscopy unnecessarily. Have you also had a FIT test to check for blood in the stool?
In terms of the anti-depressants, they are probably talking about low dose ones like amitriptyline, which are used as pain agents. They may also work on anxiety a bit. Visceral pain from IBS can be caused by disruptions to the gut/brain axis, where the brain picks up normal activity of the bowel as pain. This is where low dose antidepressants come in, to try to correct this communication. A more natural option might be gut directed hypnotherapy (see Nerva app). Pain can also equally caused by a dominant bad bug in the gut and a combination of that and the gut / brain axis. Alflorex probiotic which has been scientifically studied for IBS greatly helped me with the pain so might be worth a 3 month trial.
Bloating can also be caused by abdominal muscles not working properly (possible connection back to the brain too) and gas pooling in the upper part of the small intestine. Core abdominal exercises, to strengthen those muscles (think Pilates, sit ups etc.) might help. Certainly working on the core may help to eliminate gas from the system during those types of exercises.
Thank you for your reply and regarding the bloating element, I have a PT twice a week and go to the gym 2-3 other days a week. So I don’t believe it’s core related but thank you.
Gut-Brain-Axis I have researched lots on and yes, I do believe a lack of sleep can affect mine although not to the extent of this pain when it arises.
Stools - All tests you mentioned have been completed although they seem to have ‘lost’ a sample from last week.
In regards to antidepressants, I don’t suffer with anxiety. If the pain element was constant, I’d be more willing to try them but as it’s every couple of months I don’t think they will help and struggle to see why taking the antidepressant daily will help a sudden pain brought on every couple of months but thank you.
I haven’t heard of Alflorex probiotic - I have tried several dairy free brands of supermarket probiotics in the past for months but will look into this one and see if it will help. The dietitian steered me away from simprove due to its marketing.
Blue92. in your gut-brain-axis research did you come across the role magnesium and thiamine (vitamin B1)play? The blood brain barrier impedes many forms of magnesium and thiamine however magnesium threonate and TTFD thiamine are not. The brain, vagus nerve and the digestive system need activated thiamine to function properly. Magnesium is needed for activation of thiamine and vitamin D but pain and stress are but a few of the causes for loss of magnesium. Antithiamine factors diminish or destroy thiamine. Search on "antithiamine factors" for a list. Also search on "thiamine SIBO" and "thiamine fatty liver" for more information. One other search is "Hiding Plain Sight - thiamine deficiency". Use a B-Complex in conjunction with thiamine supplements. They work better together. Always consult your health care provider before using any supplement.
I probably have one glass of wine in a month, if that in all honesty. Originally my ALT levels were double what the normal range was, then they repeated the tests 4 weeks later and the ALT levels had halved (normal) although my AST level is now nearly double what it should be.
Generally, your AST should not be higher than your ALT. If so, there could be something going on with your liver (often associated with liver cirrhosis due to drinking but there are plenty of other causes, including lab error). If your ALT is still higher than AST, it is likely just liver inflammation for some reason. Mine ALT/AST were double the high normal values and have gone back down to perfect due to obesity based fatty liver that has (thankfully) reversed due to sustained weight loss. If you are overweight/obese, that could explain your ALT/AST numbers as well but, again, the AST should not be greater than the ALT.
Thank you Chris - would you push for further investigation into this? For my height and weight, my BMI is 22 and I tend not to drink and eat fairly healthily.
I have been diagnosed with "functional bloating" by a gastro and told that there is nothing more that the NHS can do so I understand your frustration. At least in my case after some persistence I did manage to get a colonoscopy but this did not show anything abnormal so the NHS effectively discharged me back to the care of my GP. I agree with others that if you cannot get this on the NHS (presumably as there are no "red flags") then a privately arranged colonoscopy can hopefully rule out anything more sinister.
One misconception I can see on this thread is that the anti-depressants are there to treat depression or anxiety. They can help with this BUT for IBS they are given in tiny doses, way less than for depression as the aim is to regulate a possible disorder between the brain and the gut brain and to calm down nerves in the gut that are overstimulated to cause pain/bloating etc.
I have found that avoiding trigger foods and probiotics have been more effective but I do take a very low dose of anti-depressant because it has one side effect for me (it helps me sleep - and therefore I get less sleep distruption from gut problems).
When my problems first began about 10 years ago my GP was not very helpful. I continued to get worse feeling like there was a blockage so I ended up in A and E. They checked for a blockage. Fortunately there wasn’t a complete blockage and they gave me medication to clear what was there. However as soon as I mentioned that my father died of colon cancer they wrote to my GP saying I needed a colonoscopy and referral to a colorectal department based on symptoms and family history. When I had the first colonoscopy they found and removed 2 small polyps which turned out to be pre cancerous. After that I have had to have a repeat colonoscopy every 5 years. I was in my 40’s when I had the first and have had 2 more since. Both subsequent times they have also found (and removed) pre cancerous polyps. These were too small to cause my symptoms which are due to internal bowel prolapse issues, but if I hadn’t gone to A&E, the polys wouldn’t have been discovered and removed. I am grateful for the treatment and consideration I received in A&E. When you next have a flare up I would strongly suggest going to your A&E to get checked out especially as it seems your GP won’t do anything more.
Best wishes.
Ps Your mother having bowel cancer so young may mean there could be a strong hereditary element which it would be better for a consultant to investigate.
I really feel that it's cheapskate NHS when they refuse to send you for a colonoscopy, and you have history of bowel cancer in your family! Something about this completely stinks.
So they have worked out that all the preliminary tests showed no red flags, and a referral for a scope wasn't necessary, but when you are in constant pain they should, just to eliminate it, no matter what your age.
I am so sorry you are going through this daily, and they have washed their hands of you except for taking a low dose antidepressant.
Any time the pain gets bad again, I would say -take yourself to A&E.
hi there, I’ve had ongoing stomach problems which my doctor wasn’t taking seriously and I was getting nowhere. I ended up at a&e because the pain was so bad I couldn’t stand up straight. Whilst I was there I was booked in for a ct scan followed by a colonoscopy followed by a bowel scan. By doing this it was out of my gp’s hands and the hospital got the ball rolling for me. All my scans came back clear thankfully but I’m still experiencing pain so the hospital have put me in a waiting list to see a Gastro specialist. Go to a&e, they will do all your blood tests and refer you to the relevant department. Each scan I had I only had a two week wait as they marked it as urgent
thank you - this is the exact pain I have! I can’t stand up straight at all and have to be bent. I also can’t breathe in and it looks like I have 2 stomachs occasionally. Glad to hear A&E got the ball rolling for you! Sorry to hear you are still in pain but I’m glad they are doing tests! Do they have an idea of what they think it might be?
Hi, this sounds exactly the same as me. My pain is upper and lower. They suspect I have gastritis which is the upper pain, I’m waiting for a camera test to confirm but they said gastritis can be linked to ibs so they suspect it could be that but haven’t actually diagnosed it as they explained there is no test for it and doctors can only assume this by a patients symptoms. My symptoms are very severe which is making them reluctant to confirm it. I’m trying to manage it but as yet I’m not finding any trigger foods. I’ve been advised to take fybogel every day and drink more water as I’ve had constipation issues for years. It’s helping but as I said I’m still getting pain. Maybe one day I’ll work out what or if it’s something I’m eating that’s causing it. I hope you get it sorted, there’s nothing worse than constant stomach pain
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is it ibs or something else
IBS or something else?
Who can help when the NHS won’t?
Does anyone know if they do SIBO testing on the NHS?
