So worried about left side pain and abdominal pain. Had all the tests. Dr suspects SIBO
Posted , 14 users are following.
Hi everyone,
I am new to this but I am needing some advice and guidance and reassurance if I can get it, as I cant seem to get it from any DRs. I am extremely, extremely worried about my symptoms and my health. I am convinced I have cancer.
My symptoms began about a year ago with a niggling pain under my left rib cage, hard to describe but a definite discomfort there, something stuck there almost. It often spread around my flank and to my left back and above my hip. I went to the GP. I was very worried I had pancreatic cancer, and this worry has continued and the symptoms have grown and grown since then. I have developed the following:
Discomfort under left rib cage
Constant nausea
Burping non stop
Metallic taste in mouth and bad breath
Feeling like being punched in the stomach after eating
Pain has started to spread across my abdomen and into top right abdomen under right breast
Mildly loose stools
Random pain across abdomen
Horrible pulling sensation in left side
Very tired
No appetite (i can go days without eating)
Lost 2 stone in weight
I also have suffered from night sweats for the last 4 years (back and forth a thousand times trying to get answers for this-) told they were anxiety.
Coccyx pain- again for about 4 years- had MRI on this showing nothing.
Scolloped tongue
I have had the following tests:
x2 abdominal ultrasounds
X1 abdominal and pelvic CT scan
x1 abdominal MRI
X1 endoscopy
x1 abdominal MRI and MRCP
x2 negative FIT tests
Faecal calprotectin test= 4
Endless bloods (iron levels are good), although Bulirubin levels were at 16 (my GP said 20 was considered high)
All these tests have come back normal- apart from the MRCP showing 'tiny liver cyst', which the consultant said was very normal and no cause for concern.
I am not with my 6th consultant (yes 6th!). She has said that 100% there is nothing wrong with my pancreas and that we have defiantly ruled out cancer after all these tests. She said MRCP was brilliant for evaluating the pancreas. She wants to me to do SIBO test as she feels this could be the cause of my problems.
The only tests I haven't had is a colonoscopy, 4 consultants said to me with all the negative FIT tests the chances of anything bowel/colon cancer related were less than 1%, they are very accurate and colonoscopies are very invasive and in this instance unnecessary. Plus they are so expensive. But I feel like I may need to get one to try and settle my anxieties about bowel cancer.
All my family and friends tell me its in my head. To forget about it and move on.
I am in therapy with an amazing therapist trying to work through all this and my fear of having cancer. But I still feel there is something wrong.
This is ruining my life. Totally ruining my life. I don't go out, cant eat, cant sleep. Major depression and anxiety all the time. My wonderful relationship is on the rocks over it. I have spent all the money on tests.
I am at a loss, it is just awful. Has anyone ever experienced something similar? When I try to reassure myself I just say its IBS and my anxiety is just making it worse and perpetuating the problem. But most of the time I am freaking out that I have cancer and that something is being missed. But I have had such comprehensive tests. I have never had any gut/bowel problems in my life, so this is truly worrying me.
I want my life back, my wonderful life, which since all this has fallen apart.
1 like, 56 replies
LCat sara61158
Posted
Hi Sara,
I am so sorry to read how you suffer. This is a horrible condition. Yes and its ruining peoples' lives. I had it before and now again have exactly all the same symptoms like you....the nausea, burping, winds, horrific stomach pain, horrible pulling pain, total fatigue etc etc . I also had all tests done you could imagine, also including the sibo breath tests. It sounds - as your Consultant said - it could well be SIBO. like you I've tried everything. My SIBO test was positive but even if you know you have SIBO you still dont know which bacteria are in your small intestines...so you dont know which antibiotics could work. Therefore my Consultant (and my Consultant is excellent) decided not to try the antibiotics but to do this 😄iets plus probiotics. I tried EVERYTHING : Nothing helped .... finally ...after another 7 months ...it went away .... on its own? .....My problems started 10 years ago. I had this horrific condition non-stop for 3 1/2 years. Then it went away. I was in heaven and superfit for 2 years. Then it came back ....and stayed for 1 1/2 years (again I had a all tests ...again nothing sinister found). .....then it went away again (no idea why it went away) ..... I was well for 2 years. Then in October 2020 it came back with a vengeance - out of the blue, and I still suffer today with those above symptoms.
Regarding yourself, from what you're describing I would be very surprised if it was 'all in your head'. I had zero anxiety whenever these episodes started, same in October last year. When this horror starts, each time instantly I get hit by anxiety and fatigue. I believe its the Gut-Brain Axis ... which starts off these symptoms. Of course, if there is additional stress ... that will clearly make it much worse. Its like a vicious circle. And not being able to eat makes you feeling weak, causing even more anxiety ...So it should be a good idea to try to destress.
Dont give up Sara.... its hard and it takes time to heal ..(which is tough when youre impatient like me).. there is hope !! I also read there is an Australian Professor trying hard to find solutions for people like you and me.
sara61158 LCat
Posted
Hi, I am so sorry for the late reply. I have just been gripped with anxiety over all this. It's been horrific.
Your journey sounds familiar, I wonder how are you now? It is so interesting to me how it comes and goes.
I am actually running out of tests that can be done now.
Loosing hope day by day....
LCat sara61158
Posted
hi Sara,
yes, sadly I'm still in agony. it is so tough ... and only people like you and I or Kileen do exactly understand how horrid this feels and how it totally wrecks your life. But -as you see - you're not alone. After all these years - having analysed this - I am 100% convinced that it 'does NOT start in your head' !! It starts in your stomach/gut and then INSTANTLY affects your brain causing this nasty fatigue and super nasty anxiety. thereafter the anxiety makes your gut worse etc etc . Then it becomes a vicious circle.
By some doctors we are called 'heart sinkers' because they really really want to help us ... but they can't ....as nobody knows what causes this condition and therefore nobody knows how to cure it.
As you see : all your tests come back negative. So many people like you and me just cannot understand how is it possible to be told all the time ' nothing is wrong with you!' but you feel like you're dying. that's also why there is very little research done : the doctors cannot find anything 'structurally' wrong no cancer, nothing else thats sinister..... maybe only some 'moderate inflammation. so they send you home. They cant be bothered to spend any money on research....because its nothing sinister, they think we should be happy. If the EVER would feel like this .... just for 1 day ... they would change their mind.
But we have to live with this horrid pain and nausea and anxiety. But something started off this horrid pain and nausea. It is very likely the enteric nervous system which is - for some reason - overstimulated. Maybe in my case - by previous infections... each time it started after a nasty flu or a nasty food poisoning...
please dont freak out over the cancer idea... youve had sooo many tests to exclude this.
Like you I also want my life back !!! Like you I also had a wonderful life before all this started.
Did you have any infections when this first started ?? did you have any stress in your life at the time when it started ? Did you get affected by Covid Stress ?? How/what are you eating ... as it is so tough to eat anything?
Sara, I guess you are in the US as you have to pay for all your tests. I am in the UK, so we have the NHS ..but .... thats a nightmare now because of Covid .... and backlock of many years .... so we now have to also go private ...or wait for years!
But dont give up, Sara, you're not alone . Dont lose hope !! I'm desperately hoping for this to go away again !! as it did twice before. And I have no idea why it went away ...
LCat sara61158
Posted
hi Sara,
as you also feel so nauseous and no appetite ... do you get stomach pain after eating any food ?? I guess youve also had a 'Helicobacter Pylori' stool test in order to exclude a H Pylori infection ?? Because of no appetite, nausea and weight loss ....It sounds also to me as if your stomach is even more affected than your colon. thats probably why your consultant think theres no need fir a colonoscopy.
sara61158 LCat
Edited
Hey, so I am like you in the UK. But i have little to no faith in the NHS. 4 year ago I caught a nasty UTI, wasn't given enough antibiotics and therefore it turned chronic. So 4 years later I am still living with it every day. Its been agony and life altering. I had to go private after 10 months of being told it's all in my head by NHS GPs. I see a specialist in Harley Street now and am on long term antibiotic treatment in the hope of one day ridding myself of the infection. my Prof who treats that maintains that these new symptoms have noting to do with my antibiotic treatment.
So not only do I live with that constant pain, I live with this too, hence why it has become so overwhelming.
I have gone private and seen 7 gastros. and it has cost me a fortune. With still no answers.
I have been tested for Helicobacter, all fine. For me because of the fact the pain is mainly in left hand side, and the burping I worry incessantly that its my pancreas. But I also have this horrid 'dragging, pulling' feeling down my left side too. I cant tell if that's something different or connected. it comes and goes.
Splenic Flexture syndrome has been banded around a bit, one Dr said possible inflammation of the splenic flexure, but that to me doesn't explain the burping and heaviness in the stomach, and also ok, so what do we do about it.
Ive also looked into the Psoas muscle and the impact on digestion, but I don't buy it. I still think it is cancer.I have suffered night sweats for 4 years too, so for me it all looks pretty sinister, but I cant get any answers.
I had a phone consult with a Professor in London this morning, very high up and well regarded gastro who specialises in pancreas. He was awful, rude, dismissive, and it upset me greatly. He was kind of my last hope.
I feel hopeless and with no-one to turn to to help with the pain. I fear its cancer and I'm a ticking time bomb.
I used to have an incredibly healthy diet- vegan for 7 years. Always healthy and glowing. At the moment because i struggle to eat i just get anything in me that I can, so a bit of toast here and there, and sandwich if i can. Bland stuff. I used to eat the rainbow and have such healthy dinners. But at them money just trying to get by, but soon I'll become malnourished.
Thanks for listening. I am so so sorry you are in agony. I wish i could take it away from everyone. I truly do.
Sara x
LCat sara61158
Posted
hi Sara
youre probably - like me - also living in the South East...in which NHS Hospital were you initially ?. so sorry to hear you also have a UTI and need constant Antibiotics for your UTI. And thats making of course your stomach pain even worse. It doesn't start it but it makes it worse. I know how horrid this type of pain is. Therefore it makes you think that it must be sinister as the pain is soooo bad. But - I tell you : Ive seen online patients who had previously cancer and recovered from cancer - several ones said that the pain they previously suffered from cancer was 'a walk in the park' in comparison with their stomach pain that they have now ...which they were told was 'only from 'functional' gastritis but 'nothing sinister' and 'nothing to worry about' . Sara did you ever have a Gastroscopy ? I already had 3 Gastroscopies as I was always worried again and again that it must be something serious as the pain was sooo horrendeous ... the last 2 times it was so-called 'ONLY' mild chronic Gastritis ....there was inflammation, of course, but the Gastritis was called 'functional' i e 'nothing structural to worry about'....NEVER MIND THE HORRID PAIN !!! And then there is nothing one can do as they dont know what causes it. I used to have an excellent (and caring) Senior London GI Consultant when I had private health insurance. Now Im on the NHS only ... which worries me ... and Im thinking whether I should go to him again and pay privately ...
But - regarding both of us - when youre desperate ....due to pain ....we must try different routes as well ......Sara .... have you ever considered the low FODMAP diet .... look at Monash University, Australia..... as I see youre eating bread. could you be possibly also be non-coeliac gluten sensitive ?? Many people are. I assume, of course, that your GP has of course already excluded Coeliac Disease.
By the way I also have this dragging pulling feeling .... that - together with the constant nausea - is the worst !!! Have you tried to use a heating pad or warm water bottles ... I use them to the sides of my chest when I have this badly...Even though Im 100% convinced that all this STARTS clearly in our gut !!! ... I still do breathing exercises etc.... slow breathing etc It does nt remove the pain but calms the pain a bit down. How terrible ... how you were treated by your Pancreas Expert ... crazy !!! you pay him and he dares to treat you like that !!! If he would have our pain JUST FOR ONE DAY ONLY .... it would scare the hell out of him !!! and he wouldnt talk like that any more!! Talk to to you soon again .... dont give up !!! youre not alone !!! There are millions of people worldwide like us !!
LCat sara61158
Posted
hi Sara,
I forgot to say : of course, I realise ... again... just like me ..... you also can't eat anything .... so you HAVE to eat whatever little you're able to eat ..... just exactly like me ..... I can only drink/eat wholemilk and yoghurt...... just like you with your bread ... so ... yes I shouldn't have any dairy - just in the less likely case that I may be (or not) lactose intolerant ..... but if thats the only thing I can stomach .... I have no choice !
Also ..... that fact that you also can't eat .... AGAIN ..... as said above ..... points to your stomach. Many people with IBS are able to eat .... some if them get even fat .... because their problems are lower down in their gut. But your and my problems are higher up .... likely stomach ... plus possibly duodenum ... small intestines... ... let us know how youre doing.
Kileen sara61158
Posted
this is like i wrote this nyself. All the same symptoms and pretty much had all of the same tests done. everything come back clear. im now also going seeing a therapist but so far its not helping. when you say pulling sensation, i have this almost tearing feeling in my andomen and when i sneeze i feel like its going to rip so i have to hold my stomach. what is yours like? my gyno thinks its scar tissue from my c section or endometriosis. have you had any abdominal surgeries? im now going to see a natropath as doctors have pretty much said they dont know and cant do anythinh as everything has come back clear. its so frustrating because you just want answers and yes it affects your whole life living in fear and thinking the worst. i dont have answers but i know how it feels, im in your boat.
sara61158 Kileen
Posted
Hi Kileen,
Thanks for your reply and I am so sorry you are suffering too.
I too am seeing a therapist to work through all this and my anxieties. All my friends and family think I've lost it, and think its my mental health.
The pulling feeling is in my left side, like a dragging feeling. but I also get pain under the rib cage and on the right too now. its just awful. As I suffer from chronic UTI, with this too its just all too much to bear.
I fear so much its cancer. DO you mind me asking what tests have you had done? Ive had x2 Ultrasounds, X2 CT scans, x2 MRIs (MRCP on one of them) and endoscopy.
I'm exhausted and all out of options.....
jamie04813 sara61158
Posted
Hi Sara,
This sounds very similar to me. Here is my post from a few weeks ago.
https://patient.info/forums/discuss/abdominal-digestive-issues-770914
I still have no answer, though i havent been back to the doctor in over 6 months as they tell me there is nothing more they can do and they have labelled me mental health.
alexis20017 sara61158
Posted
OMG Sara... I feel like i wrote this... literally word for word what I am going through. Exactly how mine started too... discomfort under left rib and just took off from there! Crazy how similar our cases are... it's so frustrating and I'm just trying to get through each day but it's hard as I am sure you know... the gut is such a mystery a lot of times and it doesn't help that naturally we get nervous/stressed/anxious over symptoms and probably do not make it any easier. Please know I am thinking of you and keep us posted on how things go for you. Sending you loads of positivity!
sara61158 alexis20017
Posted
Alexis. im so sorry you are suffering too. May i ask what tests you've had done? did you say you have all the same symptoms?
have you had any luck with a diagnosis? found anything that can help?
Ive tried looking in to more benign things it can be but i dont get any answers. i just always come back to cancer. But i dont understand how it could be missed all this time by so many drs.
let me know how you are doing? Where are you based?
Sending love and strength x
LCat sara61158
Posted
Sara.
I feel so sorry that you also feel so horrible that you constantly think you must have cancer. The problem with this quality of life destroying illness is that the pain, nausea and irritating symptoms are so bad .... that the word 'benign' is probably inappropriate. I had a new GP : when he realised that I had stomach problems he instantly mentioned 'Antidepressants' !!! How can that help ??? They dont even want to investigate !! There's very little research going into it..... thats why the medical world still has no clue what it is , what causes it nor how to cure it .... they dont even know how to alleviate the symptoms.....or how to help you being able to eat. I was thinking yesterday again to which GI Consultant to go. But the problem with that is : they can analyse and analyse and give it names like 'Functional Dyspepsia, Functional Gastritis , IBS or SIBO (small intestinal overgrowth) etc etc - but - after that - they can't help you either. ... besides giving you antibiotics for the rest of your life. And youre already having antibiotics for your uti anyhow. This is the third time I had/have this and the only thought that keeps me going is that it went away for me twice before. When it went away NOBODY knew why. They dont understand why you get it and they also dont understand why it goes away. Therefore the only thought that keeps me going is that it went away twice before. Dont give up Sara ... and always remember that you're not alone !
andrea64883 sara61158
Posted
I feel like this could be my post too, but I'm a little earlier in the process. Mine started in the last 8-12months. I had a baby 7 months ago and its possible I had symptoms then but put them down to pregnancy which were severe acid reflux, back pain predominantly on my left side and some pain under left rib. I also hardly put any extra weight on during my pregnancy but other than that i was well. my labour was a bit rubbish, i had failed induction over 5 days ending with emergency c section.
I cant quite remember when but possibly few weeks after the birth, i just did not feel right, i felt like my tongue was swollen and it had scalloping and i was still getting really bad reflux and regurgitation. Gp was pretty useless, gave me reflux tabs and told me to go to dentist. Dentist said tongue looked ok but that I had very tense jaw and was grinding my teeth so gave me mouth guard. I was breastfeeding and read that I could be dehydrated so i just tried to drink loads of water. nothing changed.
I then started loosing weight and having spells of really bad nausea, I vomited a couple of times and on several occasions i just had to go to bed and couldn't eat or drink. I've been drinking ensure drinks to try to stop my weight loss.
My back ache changed from little niggle to pulling, throbbing, pulsating type pain and was moving to my side and under left boob. My bowel movements were all over the place and my stools were definitely changing. Then they went less frequent but when they did come they were bulky, had what looked like seeds in them, they almost reflect the light they are soooo greasy/oily and there is an oily sheen on the toilet water.
At this point I became obsessed that i was dying and that it was pancreatic cancer, I used to look at my baby and sob, I wrote my will and letter to my partner if I died! I think anxiety had definitely kicked in now but it was because I really struggled to describe my symptoms and I knew everybody thought i just had baby blues. i also kept getting water infections.
I tried the gp few more times, then when she realised my weight loss, she agreed to run some tests, h pylori, full bloods and she did prescribe anxiety tabs but I didn't take them . the Results were normal apart from one thyroid level being off so she suggested retest in 4 weeks and to try again with reflux tabs. I think the bloods were quite limited though snd she never tested my stools foe the greasy/oily texture. I then pushed and said I wanted urgent referral to gastro consultant as I was so worried especially about weight loss.
Went private for my referral (wish id stuck with nhs) and in my panic didn't pick pancreas specialist and just general gastro consultant,
he arranged urgent CT with contrast due to weight loss, came back clear including the pancreas as he knew this was my area of concern. He said we should go eat chocolate cake the results were good and that my back pain was probably muscular. I was relieved that no cancer was found but was left still with no answers so he agreed to do endoscopy and to test for coeliac disease (cd was his idea)
I'm having my endoscopy early November but i'm regretting not pushing for this to be endoscopy with ultrasound Eus as apparently this is one of the best ways along with MRCP to test the pancreas as CT may not pick up smaller stones or early issues.
I have emailed my consultant as he cannot see me until my endoscopy review, I have reiterated my symptoms and said i fundamentally believe i have an issue with my pancreas and want EUS or MRCP, I want my stools testing for elastase which will tell if i am not absorbing fats and also to ask if ultimately how can i get referred to pancreas specialist in UK ss all the people I have looked at want a medical referral.
i am now obsessed with reading about pancreatitis, my symptoms mirror so many peoples stories and they too all really struggled with diagnosis. Believe me I do not want pancreatitis as it sounds awful with no cure but i know there is something wrong with me.
sorry i just needed to vent as im trying not to tell my family too much as they are worried about me. Sara i was so happy (but obviously its not good) that you had tongue issue too ad nobody else ever mentions this.
andrea64883 sara61158
Posted
I meant to ask you all, what are your stools like? Are the greasy at all or seedy? this is the part of my symptoms that really freaks me out. Looks like you have lots of tests but the 2 that apparently we should be pushing for are the EUS and MRCP and apparently its good to get both. However getting a doctor to do one let alone both of these is probably impossible even though we would pay private.
sending you all positive thoughts as i know how horrid this is
sara61158 andrea64883
Posted
i can relate to everything you have said. 1000%. Its the same for me.
i had MRCP scan back in August. i then contacted a pancreatic cancer specialist in London. He looked at my MRCP scan and reassured me that all was fine. it was his specialism and he wouldnt recomend any futher imaging. i just dont know where to turn.
i went back to my GI dr who is also specialist interest in pancreas as she reassured me too. i feel like im going crazy.
Stools are loose and seedy as u say, yellow and mushy if that makes sense
i am so sorry u are going through this too. i cant tell u how much i relate. truly. im so frightened. i have had health anxiety for years and hoping so much that this is all just anxiety.
andrea64883 sara61158
Posted
its so awful isn't it.
I have endoscopy next week and my family are all saying that will give you the answer but i know it won't. They keep telling me not to google and self diagnose but like you I feel my symptoms tick pretty much everything on the list.
I still haven't even done a faecal elastace test yet. I have just seen that i can pat for a private one which i might do amd stick it in front of gp and consultant.
This is strange question but have you noticed any changes in your body odour, i sometimes feel like i smell funny. i asked my partner today and he said there was a hint of strange smell. Again this can be sign of malabsorption. Now im in the shower every 5 minutes. i feel so put of control and hate it.
I'm counting down the days until next week and then im going to push my consultant to either refer me to pancreas specialist or do an MRCP or EUS or ideally both.
what can you do next?
sara61158 andrea64883
Posted
so odd you mention body odour! Yes i have noticed it recently and its never been a problem for me at all. it seems you and i have exactly the same symptoms. This is so bizare.
So because of my clear MRCP, the Drs arent recomending anything further. They feel like there is nothing more to test.
im at the end of my tether. ive seen 7 GIs, 2 of which were pancreas specialists.
sara61158 andrea64883
Posted
@andrea64883 do you also have bad breath? i have terrible bad breath a lot
tiffany85207 sara61158
Posted
hi! please tell me how you are doing now? i have all of these symptoms and have been worried about my pancreas too anyone have upper middle back pain? most of my pain is on the left side did you check Feceal elaste test (spell check) what about lipase levels? mine are pretty low and im afraid of chronic pancrentitis or worse things but think it all has something to do with scar tissue (adhesions) and me having a baby shortly after the back pain now is scaring me a lot bc i know youve reald what articles and websites say smh