Any one with constant pain, not really related... - IBS Network

IBS Network

35,382 members11,933 posts

Any one with constant pain, not really related to BM, or food?

Ruggerhead profile image

I said I would post this again, hopefully those in the same situation can respond, especially after talking to another poster, where someone is very worried that its not IBS. And I replied to this young person, with the fact that they were not alone. I too have been experiencing constant abdominal pain since May/ June, and it is not relieved by anything, or it seems, made worse by any food. I have tried all the diets, ie Low FODS, low carbs etc etc, but nothing makes any difference. The pain is a constant stomach ache that is least severe in the mornings, then gets worseover the day. I never feel as if i want to be sick or run to the toilet, I just feel it is always there nagging away. Sometimes moving around my whole tummy, sometimes a bit sharper pain wise, sometimes a 3/10 and other times 6/10 pain wise. I have had all the tests known to man, and all negative, so just told its IBS and 'Go live with it' not good enough. I will not be told its all in my head as i work in the field, and it just started one day. I have just send my samples away to a lab in Germany to see if my microbes are mixed up, maybe from antibiotic use or drink, not sure. I know its not the norm, IBS usually presents as sharp cramps that go away or get better for some period at least. So if anyone else out there suffers from constant 24/7 functional abdominal pain for a long period can you just let us know so that we know we are not alone and that we know that others experience the same. I was told by two leading gastric consultants. 1 You have IBS, the other No you dont. So what is it?

29 Replies

Hi Ruggerhead, I experience something very similar to this. All my tests are negative and my pain is constant. My pain seems to get to it’s worse of an evening and keeps me up most of the night. I’ve been told I’m faking by professionals because they find nothing wrong, I’ve been passed from department to department. I’m only 18 and this seems like it’s going to be my future now. My pain is mainly right sided lower abdomen but is also central and sometimes encases my whole abdomen. Please don’t feel alone, my messages are open xx

Ruggerhead profile image
Ruggerhead in reply to Amy0302

Amy this will not be your future, your gut can heal, buts its hard as it brings you down with it, ie you look at other people living and loving life. IBS with younger people is more common than you think and I know lots of young people that have recovered, so keep the chin up. I find this site great because it is where people care, from my experience how dare they question someones pain, but they just want to fob you off, be a different story if they had something worrying them hun? Stay in touch and let me know how your feeling..

Amy0302 profile image
Amy0302 in reply to Ruggerhead

Thank you so much, I’m not giving up! X

Hi Ruggerhead - my experince has been pretty much identical to yours. Started 18 months ago. Diagnosed on visit to GP (was first in a very long time). A raft of blood/fecal tests but no scans. Always quite healthy (sports inc Rugby , Squash but retired now). I've been quite meticulous over researching IBS and experimenting. There has never been an instant fix. I have never been able to absolutely pin down a trigger. Did the low FOD diet for a year but started easing that although I do tend to keep the glutens and lactose on the low side. Changed from coffee to tea (NHS advise 3 cups max! - no joke!). Fat I have a suspicion about. Meal size seems to play a part. Rest is the single most effective relief and I almost never notice the symtoms overnight. Stress plays a part in aggravating the symptoms. Probiotics inconclusive. Vitamin D inconclusive. CBD oil - at one point I thought I'd found something that made a difference but not so sure after 8 months use of three different brands and strengths. I still take four drops at times. Having a scientific background I try to be open minded about alternative meds. I continue to eat porridge for breakfast (ground linseed added) as a good source of soluble non gluten fibre. I also upped my excercise regimen and believe this has helped as I'd become quite sedentary outside a couple of dog walks a day. Gradually over a year I improved but it it came with highs and lows. The recent Christmas period has not been so good. Not helped by being prepared for three guests for five days and that being quashed by lockdown rules. Dilemma whether to eat or throw some food knowing you'll probably suffer if you choose to eat. But I'm optimistic I can get generally comfortable most of the time.

Hi Richard, as you probably guess I am exactly like you, a rugger bugger too ha, in my 60's now. Do you have constant pain? ie about a 3-4/10. It is always there for me, I dont know how it started i did have a night out and started soon after that. I have just had my microbes tested to see if that is what it is, sometimes the pain seems to be nerve like and coming from the back but then migrates to my tummy again. If i push my tummy in it always feels constantly inflammed. It can really get you down huh?

Hi again Ruggerhead - yep - long time rugby age 11 thru to 35 and in my mid 60s now (still listen to Deep Purple and Led Zep lol). And yes, my IBS is always there (at the moment 3 - 4 during the day) although it rarely troubles me overnight. Two things you mention are particularly relevant.

1. The sensations from the back. I have wondered about a link here and have come across mentions of such connections. Back injury finished my playing career and I've always had back trouble since. I know I became too sedentary from early retirement and a bit of swimming wasn't really enough to keep me in shape so the back pain worsened. Although there doesn't seem much logic I have thought it a bit of a coincidence that one aggravates the other or seemed to. They say IBS is to do with the brain gut axis how your pain perception has changed rather than there being something new to cause that pain.

2. Pain on pressing - yes absolutely. Sometimes very tender and even the dog has become wary of jumping on me these days.

The only memory I have of anything unusual leading up to the IBS is leaning over weeding in the garden I noticed very unusal movement of the gut and I still get this sometimes. Hard to explain but it's distinctive. I imagined I'd herniated something although it wasn't hugely painful. I'd given up drinking when alone the previous year so my alcohol consumption dropped from half bottle of wine or equiv (beer) every eve to about 3 pints a week while socialising although I occasionally have a scotch binge with a friend. Pre IBS I had also had a curry that I thought was going to kill me (curry every friday for the previous 20 years! but binned now) and I wondered if that had wrecked my gut 'biome' as they call it.

Every so often I get back on the web to do more research - possibly prompted my a another moment of loss of confidence that the diagnosis is wrong and it must be something else but no matter what route I take the most logical answer remains IBS.

Back in the late Autumn I was in fairly good shape (2 or even 1 out of 10 pain) and suffering was at the lowest but the Christmas period has not been great. Having said that - once I get back into normal routine I really am optimistic that I'll get a lot more comfortable again. It's a shame the gyms are closed again. Been doing that for a year now and despite it being initially very hard (and quite uncomfortable gut wise) the after effects seemed to be very positive. Invested in a rowing machine. Well - I'll try anything to see if I can get better!

Pansy2 profile image
Pansy2 in reply to Richardd55

Hi Richard 55 upon reading your post could I ask what the unusual gut movement felt like when you were weeding ? As I’ve been getting a pulling feeling right side of navel also thought it was a hernia I also have ibs and not sure if the pulling thing caused my low back to spasm on same side ?Very painful x

Richardd55 profile image
Richardd55 in reply to Pansy2

Hi Pansy - sorry to hear of your pain. My abdominal sensation is as if one part of inflamed gut is being squeezed or rolled over another or through the peritineum (hernia) mainly on the lower left. Perhaps there is inflamation but IBS excludes that so it puzzles me. But in contrast IBS can include pain when pressed. It's an odd condition not least because it's a syndrome (no known cause). The problem with the abdomen and pelvis area is that there are so many potential causes of pain. I assume that you have had your IBS diagnosed? I wondered if your navel pain has been there all along since IBS diagnosis? I don't have an obviously mishapen abdomen so maybe hernia is unlikely although I believe they don't always show themselves.

Pansy2 profile image
Pansy2 in reply to Richardd55

Hi Richard I’ve had ct without contrast appeared normal it is tender to touch no obvious lump so I’m baffled too I’ve had ibs in the past but never with this type of pain , my ibs pain in really low down in gut sharp cramping x

Richardd55 profile image
Richardd55 in reply to Pansy2

It is a puzzle Pansy but the one thing that seems consistent about IBS is its inconsistency! It seems so variable - so different for different people and yet this is in keeping with its definition. I thought that mine was atypical in its constancy until I read ruggerhead's post. If anything yours seems more typical of what people with it suffer. Not that that helps you. I'm assuming that you have IBS type C and that you have experimented with fibre that is low in gluten, like oats? I say this because IBS c can respond well to the 'right' sort of fibre and worsened otherwise. But like many of these things it takes a while for the gut to re-educate itself.

Pansy2 profile image
Pansy2 in reply to Richardd55

Yes typical ibs c I’ve found due to my so called healthy diet high in soluble and insoluble fibre plenty of fruit, water etc and being very fit it just clogged the system up ! Leading to more problems ! Had sibo couple years ago course of antibiotics killed off all bacteria felt well for few months then back to ibs c ,that was caused by me taking probiotics ! I can’t win x

Richardd55 profile image
Richardd55 in reply to Pansy2

Crikey - but there is a BUT. I perfectly understand your 'healthy' diet and admire you for it but I have read that with IBS c you need to be quite discerning over fibre both in quantity and type. Advice (I think on the NHS wesite - which has been updated since I looked last year) included actually lowering your fibre intake! I will have to look back for that info to double check as I'm saying this from memory. IIRC they suggest just two portions of fibre (80g each) a day. Whatever happened to '5 a day'? Not for us IBSc sufferers! What a conundrum. As you say 'you can't win' or so it seems. But I am determined to continue to sort this out and have had some success with lifestyle changes. One person in the thread suggests Amitriptyline. If things get desperate I would go down that route but I am hoping to find a more natural solution and believe I can. As you might well know, Amitriptyline was originally used as an antidepressant but it was found that in low doses it was helpful in calming nerve over-response so used to treat fibromyalgia and IBS amongst others.

Pansy2 profile image
Pansy2 in reply to Richardd55

I was always given fybogel by gp even though I said I eat plenty ! Have had a few bowel impaction in past 2 years only recently did I decide to ditch the fibre it worked until I had to take moviprep for colonoscopy then back to square one that stuff messed my system up and I’ve asked for a ssri which I hope will help withe pain side of it x

Richardd55 profile image
Richardd55 in reply to Pansy2

Hi again Pansy

Firstly one correction to my earlier post about fibre intake. This is copied from the NHS wesite's advice on IBS (a do NOT list - there is a DO list as well)

do not delay or skip meals

do not eat too quickly

do not eat lots of fatty, spicy or processed foods

do not eat more than 3 portions of fresh fruit a day (a portion is 80g)

do not drink more than 3 cups of tea or coffee a day

do not drink lots of alcohol or fizzy drinks

I have an unfinished pack of Fybogel in a cupboard. Useful fibre because I believe it's gluten free but I just thought I'd concentrate on trying to get my diet right. Just stepping back to something you said about SIBO. I assume that this was dismissed in my case for although I don't remember the GP saying he'd specifically discounted it I do know that the various tests included a more in depth analysis that would have done. But I do wonder if a bacterial infection was the original cause of my IBS (see killer curry in a post above). At times, despite being 'c' type my IBS has felt like that sort of infection. One other event coincided with this - severe toothache requiring a longer round of Amoxycillin than normal. Throw in family stresses and maybe it was all just one step too far for the gut! But there is a lot of thinking that bacterial infection and/or SIBO can cause IBS and I go with that theory. Have you tried reducing sugars (sucrose, lactose and glucose are fuels for certain undesirable bacteria) and fats/oils and focusing on GF fibre rather than other types?

I did about 3 months on a probiotic containing high amounts of Lactobacillus and Bifidobacterium as periodical research indicated benefits in some IBS patients but I couldn't say they had an obviously notable effect on me. Perhaps my improvement had been down to the combined impact of all I tried.

Ok Richard, like me you are well informed on this, so heres what i think, just my opinion in what happened to you, that your right a few things in the same pot, excuse the pun disrupted your gut microbe, that would include a change, even minor in the way that the gut see's a curry, the antibiotics and the stress. They all mess with your natural gut balance especially antibiotics and stress, its like a washing machine of cortisol, bad bacteria etc. As antibiotics kill all bacteria good and bad. So like me that could have been enough to set your gut back, and boy can take a long time to reset. Also Richard you might consider this, some of your pain may originate from nerve damage coming from your back, bad microbes can damage nerves and set off IBS. Just a thought. I am sending my GI samples to be tested, and will be interested to see what happens ie good and bad bacteria. I believe all my problems started when i was put on a toxic medication that i never should have been on, it upset my gut balance, i have had all the tests and structurally my gut looks ok, its just hyper sensitive like yours. Sometimes my pain is a sharp ache like a nerve type pain, other times its a constant dull ache, around the belly button. Like you my tummy always feels thats its inflamed somehow, as its tender to touch anywhere from the belly button down, not badly tender but if i push down reasonably hard i feel pain, especially in the lower bowel regions. I dont have IBSD, I have IBSC, and that waxs and wanes, but i dont tend to go each day like i used too, also my pain does not seem to be around BM or food as i find it hard like you to identify trigger foods, My diet is mostly non diary, glutton and sugar free as best i can get it. Somedays the pain is manageable other times it can ramp up a little. You might consider the back theory as strange as it seems and maybe see a physio, they could all be connected.

Thanks for all your thoughts Ruggerhead and yes, I completely agree with your points. I haven't visited a physio although I did try courses of Osteopathy and Chiropracty but these were well before IBS. I will put all three on my 'to do' list with physio first. Remarkably, despite playing full seasons Rugby every year, I've never had physio in my life! Perhaps I was just good at running away!

We seem to have travelled a very parallel IBS path as my pain locations and experience are nearly identical to yours (belly button incuded!). Re: BM - I start getting a bit twitchy if I miss a day and that had become a little more common but I had put it down to age and retirement lifestyle.

One thing you have been more proactive about is seeing the Medics. I got on well with my GP (a senior but quite young practitioner) and thought his decision could be right. He made it with the strong proviso that if I get a change in bowel habit to get straight back to him. He suggested FODMAP (which I'd already discovered) but said don't get too strung up on it. I guess they are concerned that it's a bit more challenging to get a balanced diet, tends to involve more expense and is easy to fixate on unnecessarily. Having said that - I took it pretty seriously (even down to a 2 sprout limit :-D ), used a couple of Apps for fodmap ID and record keeping (including BM!). Only recently given those up as I thought I they had helped enough.

There is one proposed cure to IBS I came across that I have yet to try. Very logically the guy pinpointed that the brain gut axis needed restimulating by vigorous excercise and the way to do this was to induce a gagging reflex on a regular basis. He did this using a wooden spatula on the throat area. I've put that one on my to do list but quite low!

I think that diet/BM both have had a part to play in IBS and while there is no instant reaction or fix, over a year of trying to correct both I have seen improvement. In early November I tried a homemade curry which was a first in nearly 18months and had no bad reaction. I was actually lining up for a full blown Indian take away the following week when I was hit by another appalling bout of toothache which could only be 'fixed' by two rounds of different antibiotics (and the booking of an extraction still to happen due lockdown).

Those antibiotics, the run up to Christmas with its emotions and dietry tinkering gradually saw my IBS return from level 1/2 to 3/4 average with the odd 6 or even 7.

I still feel sure I can get back to 1/2 soonish though.

It's really good that you are investing in your health by getting that GI test done and I do hope you post some info about the results when you get them. I know my GP sent mine off to a lab that does more thorough research but I didn't memorise the detail because they came back negative. However if I get no joy with progress I will very likely follow the course you are taking.

Hi Richard yes we seem very similar, my anxiety also seems to be a problem, yesterday i had a decent day pain about 2/3 but then for some reason this morning i just felt anxious, do you ever get like that, a low grade anxiety? I have trouble getting an unbroken nights sleep since this all begun and that does not help either. Just to confirm that you like me have constant mild enough pain ? For me its not debilitating but is noticeable. For me the pain is all over the shop, if i push in my tummy from the belly button and down it is always tender, like its constantly mildly inflamed. Sometimes the pain gets sharper and feels more to the sides, and nervy and it seems that may come from my lower back thats always the confusion. I have had mild lower back pain for a while but I definitely think the IBS may make that slightly worse. The pain for me is never cramping like most get but rather either a constant ache, or sharper nerve like pain, ie just feels sharper sometimes. It originally started when i thought that i may have over done the situps but my BM have also been altered, ie i do suffer from constipation despite my diet, but that could also be due to stress of almost forcing myself to be regular if that makes sense, i am 60, but i certainly dont go everyday, amybe once every 2nd day, but for a while there i was down to one BM a week. There does not appear to be anything structurally wrong, as for a while there i was in hospital as they thought it might be stomach cancer like my Mother and Father but at this stage the markers seem ok, they were also looking at Chrons but discounted that. Its hard sometimes to think that i may be saddled with this for life, ie never feeling 100% but I guess when you get to an age and dont have something wrong its a rarity. I will keep trying to look at what i can do, its just early days yet, but it has taken its toll mentally at times, just feeling off colour all the time..

It's interesting Ruggerhead that our symptoms are so alike. Yes the pain is always there. It doesn't wake me and generally it is almost not noticeable if I do wake at night which tends to happen at least a couple of times. A fitness watch (bought a year ago for swimming but also informs of sleep quality) usually indicates that I've had up to five interuptions. I do notice that if the quality has been low I tend to feel the IBS more the following day. I can absolutely identify with believing that I 'should' be regular with BM (as I was up until retirement). I do put a lot of my problems down to lifestlye that comes with retirement and maybe just 'age' too. I couldn't agree more about 'anxiety' or 'stress'. Somehow these do affect me but exactly how that works I'm not sure. On the one hand if family are being particulary demanding or upsetting that can trigger things and yet I have a hobby that often requires huge mental demand and has moments where stress levels can absolutely peak and yet, if anything my IBS, is reduced.

If I can get back to 1/2 level pain I'll be happy enough. At the moment it's generally 3/4 and that's a bit of a drag. Right now it's 5/6. and I do find it can peak in the time leading up to evening meal although I can't think that I am particularly conscious over looking forward to eating.

The only other event change in my life leading up to IBS was drinking far more fizzy drinks (2 or 3 cans a day). Two reasons for this - giving up the wine at home and also the hobby tending to be quite dehydrating. Perhaps that was another nail in the coffin so to speak.

Pansy2 profile image
Pansy2 in reply to Richardd55

Hi Richard having ibs on and off for years I tried lactobacillus it worked fine at first then turned into sibo couldn’t even have a sip of water without extreme pain bloating and the most horrendous foul gas ever, I’m very afraid of taking probiotics again , thinking could be my back problems exaggerating the pain have been chiropractor they think not , so will see how it goes , the nhs website doesn’t mention whole grains like bread , cereals I used to eat lots lol x

Richardd55 profile image
Richardd55 in reply to Pansy2

Hi Pansy - Interesting that you had a bad reaction to probiotics because I'd assumed that apart from 'good' bacteria most of what they usually contain is pretty inert. I can understand your reluctance to try them again however there are some products that seem to include substances like lactose and that can be a problem. Also - there may be a link to issues using live bacteria. Usefully it has been found that heat inactivated bacteria can work equally well.

Lancet Gastroenterology -

Researchers studied whether the heat-inactivated form of Bifidobacterium bifidum MIMBb75 could alleviate IBS symptoms:

.... these results suggest that heat-inactivated Bifidobacterium can play a significant role in relieving symptoms of IBS ... This is important because inactive probiotics have several potential advantages over active probiotics. For example, they are more likely to be stable, particularly if exposed to excessive heat. Inactive probiotics are also easier to standardize than active probiotics. Active probiotics also raise concerns for patients who may be susceptible to infection; inactive probiotics should relieve these concerns...

The only Probiotic I found with what was supposed to be sufficient in levels of Bifidobacterium was one that also contained Lactobacillus.

Your comment on cereals/grains is also interesting. In the lead up to my worst peak of IBS I stayed in a vegan's B&B for a few days (coincidence - I'm far from vegan but openminded). You would have thought that the lifestyle would have been ideal but far from it. Heaps of meusli, fruits and nuts certainly did not help. Okay there were other things in the equation that wern't helping but it wasn't the first time it crossed my mind that eating too much of this type of food increased the pain.

Pansy2 profile image
Pansy2 in reply to Richardd55

Hi Richard I’m not a meat eater I used to eat nuts and seeds everyday on top of cereals etc , I also have a gallbladder that’s not working properly full of stones so I don’t know if that’s contributing to my problems for all I know that could of caused the bacterial overgrowth as bile is needed for digestion x

Ruggerhead profile image
Ruggerhead in reply to Pansy2

Pansy, I too was diagnosed with SIBO, BUT, the antibiotics they give you also mess with your gut flora, so while they may cure something that can bring on IBS symptoms. I would think about taking the SSRI's too. I was also given those, they actually increased LFT (Liver function tests) and can also mess with the gut. SSRIs also have two other side effects, one being increased anxiety even though they are an anti anxiety drug, so that can also increase stress for a few weeks, thus messing with your gut balance. Consider some sort of GI test to see what the state of your gut is in, ie parasites, good v bad bacteria etc. I just got a decent deal with a German lab that comes highly recommended, BIOMES. A friend used them, sent off a sample and received a really good report. Not sure but can let you know, I think my test only cost about 80 euro, and money better spent than all the other avenues. Then at least you can see what you are dealing with. Pro and Prebiotics can also make things worse in some people. Some of the anti depressants can work at low levels but tend to be old tri antidepressants like Richard mentioned, they break the mind pain barrier and can be effective at low doses for some. Just not sure about the SSRI's and for me i felt that the extra anxiety just put me back. This is a good little support group we have so lets keep each others confidence up with information as its important. I suspect we have all had the go away and deal with it, I would love to just suffer every now and again like many, mine is 24/7, apart from at night like Richard where it seems at its least painful, maybe thats due to the digestive system resting or due to the back that the mind is a bit more restful during sleep hours. To be honest since i have had this my sleep pattern has also been messed up, are they related not sure.

Pansy2 profile image
Pansy2 in reply to Ruggerhead

Hi ruggerhead like you still not convinced it’s ibs the pain is different , feel like am banging my head on brick wall As far as doctors concerned , the gut flora test sounds a good idea might look into that x

Pansy2 profile image
Pansy2 in reply to Pansy2

The laxative Movicol the doc keeps telling me to take increases the pain makes me ill couldn’t eat or drink for nearly a week x

Pansy2 profile image
Pansy2 in reply to Pansy2

Send that to myself again lol🤣

Hi Ruggerhead, this article I found on the web may help to explain your chronic pain. People with IBS can have a hypersensitivity to pain which is worsened when the pain persists for a long time.

Ruggerhead profile image
Ruggerhead in reply to Tess359

Thanks Tess that may be it, especially when the structural tests come back clear.

Functional abdominal pain is treatable. Have they offered you anything for it, such as Amitriptyline?

I suffer from intestinal pain (mainly at night). I take Linaclotide which calms intestinal nerves and reduces pain. This is meant to be for IBS-C, but after the bedding in period it didn't help me with the constipation, so wondering if it could be used just for pain. I also take Alflorex probiotic which has reduced my pain to zero much of the time.

Have you also tried enteric coated peppermint, which is meant to help with intestinal pain?

Our of desperation I had an intolerance test done privately ( £47) The results were odd and I wasn’t sure if it was a con but I cut out the foods they suggested I was intolerant to. It’s helped me massively and I was very sceptical! Eliminating beef from my diet has been the biggest game changer. Also cutting out turkey ginger, grapes ( currants and wine) excess sugar and salt has helped enormously plus eating much smaller portions. I have cheated over Christmas and symptoms are coming back so this has definitely worked for me

Just a thought

Tal x

You may also like...