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.

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  • Edited

    Hi Everyone I've just found this thread and reading it is just like I could of wrote so much if it ive constant ache pain in my left side under my rib goes round to my back it's always there the second I wake up till I fall asleep I can't even lie on my left side it hurts to much. My stoll is never brown always yellow or orange even very light sometimes and greasy if I drink Alcohol I find I have to use the toilet urgent and often and the next days I'm on even more pain I'm convinced it's pancreatitis or PC I'm scared obviously like everyone on here I've had so many tests a ct 2 years ago clear ultrasound x2 clear colonoscopy x2 clear apart from small diverticulitis this can't cause pain high up as its lower in my Colon I've had bloods and came back with high triglycerides I now know this can point to pancreas issues I've also had raised Fecal calprotectin of 230 which often means ibd but colo ruled that out I've now read that's another link to pancreas issues why can't we get a diagnosis and start to be helped this is a living nightmare any replies and help will be greatly appreciated I'm a 37 male in NW England after 2 years of this I'm now so down don't know what to do next keep safe all of you.

    • Edited

      hello Michael.... sorry to hear you suffer too. . I've no answers I'm afraid but just to say i know how you feel. its such a horrible feeling... worrying about what it could be and in constant pain. i know iI'm fed up of it. Have u any follow up after those bloods?

    • Edited

      Hi Michael

      Just seen your responses i will just reply on here. Like Suzanne I have no answers but just want to say i'm sorry that your are suffering too.

      If you are thinking of going private in manchester there is a guy who works at the spire clinic who looks really good, specialises in Pancreas too. i might see if i can transfer to him after my test next week.

    • Edited

      OK thanks for that I'll have a look see what can find and yeah just gotta keep trying now more tests needed really need EUS to clarify any issues with pancreas if that comes back OK what to do then I really don't know thanks

    • Edited

      I've gotta wait for colo report then see that they'll say more bloods but I need more eus hopefully this can't just carry on going round and round I'm gonna lol private too thanks hope you guys get some more answers soon and relief and please keep in touch any updates or info or anything cheers

    • Posted

      From what i've read if there is a problem a combination of mrcp and eus should show something so i'm pushing for both also the faecal elastase test can show absorption issues but this can be due to other conditions.

      I literally tick every symptom for chronic pancreatitis and i'm heartbroken, our little family was finally complete with our miracle baby and now i feel like i will ruin it all.

  • Edited

    Hi All

    Hope you are doing ok, I had my endoscopy today and as suspected nothing major was found other than a hernia, he took some biopsies to check for infections in the small bowel but he said overall it looked good and no i'm not coeliac.

    I had already emailed him about next steps and so he is going to recommend that i get referred to a pancreas specialist, there is a doctor in the private clinic who looks ok, or he will do it via my gp to get me into the nhs centre in liverpool. we are having follow up next week to agree best approach. So still no answer but happy he agreed to refer me.

    Alexis how did you get on?

    • Posted

      Hi Andrea, I was thinking about how you were getting on this week too... thanks for your update and ask 😃 Same here. Colonoscopy looked normal - will wait for biopsies but expect those to come back normal too. My GI doc says IBS and thinks my back pains are unrelated since my back pains tend to move all over ... I'm still having the upper abd pains primarily upper left side too. Showed her my stool pics and she didn't seem alarmed at them. Following up with her in 4 weeks and if I am still feeling the same I will press for more tests. I am so glad to hear it sounds like you are finally getting on in the right direction. I will be thinking of you! Pls let us know when you get in with a specialist. Hang in there in the meantime... I know it's hard!

    • Edited


      Glad your colonoscopy went well and as much as you don't want to be ill, its good to get diagnosis. good idea taking pics of the poop too.

      stay strong and lets keep each other updated


    • Posted


      not good, still losing weight, tongue is really swollen and poops a mess, still getting which is now all in my left front too and spreading to the tight. GP has agreed to do some bloods to check vitamin levels and faecal elastace test. i am convinced i have malabsorption. i have follow up with my GI today but i think he will discharge me snd hopefulky arrange a referral to pancreas guy.

      How are you doing?

    • Posted

      Andrea, sorry to hear you aren't doing well. Hope you can get to the pancreas specialist soon and start moving on that. I am about the same, no worse but no better. Still have the middle back pain on both sides radiating to my front ribs and lots of gas this week. Hoping we can all get some answers soon, this is so hard. 😦 Do you think EPI could be a potential cause of all this?

    • Posted

      Hi Alex

      well I think there is an issue with my pancreas unfortunately which is then causing Some malabsorption/EPI.

      It just seems odd to be in such a state but never having had an acute attack. In most cases people have an acute attack or several which then starts to cause long term damage and chronic pancreatitis. however there are stories on various sites of people who got diagnosed with CP and EPI having never had acute attack where they have had to go to hospital.

      i just font want it to be pancreas

      Do keep track of your symptoms though and if you feel it doesn't fit IBS do push as often lots get put down to IBS when there is another underlying issue

  • Posted

    Hi Sara,

    I am literally tearing up reading through this discussion board because the last 8 months all of these symptoms have been my life. I literally have every symptom you mentioned even down to the scalloped tongue which I think is from malnourishment. I have lost probably 15 to 20 pounds this past year. I am so anxious all the time because I truly feel something serious is being missed. It has effected my relationships and it has been so incredibly difficult to deal with. As I'm sure you all know 😦

    It all started in June of last year- I started experiencing pain on my left side and pain under my ribs and slight pain above my belly button on the left side, then I started to notice my stool was just not looking right. It was floating there were little bubbles in the toilet and it was light brown/tan and everytime i wiped it is yellow. I immediately went to the internet and of course the first thing I see is pancreas (literally had no clue what a pancreas even was before now and now I could probably tell you everything about it lol) and I have basically been obsessing over this ever since the symptoms started. I truly think my family thinks I am crazy and it is so sad because this has truly affected not just my physical health but my mental health. I am constantly wondering if I am just going to die because something is being missed. It does a number on your mental health living in this kind of fear constantly. I did start with one therapist and it didn't go well she was not helpful and made me feel like everything was in my head so I need to find someone new soon to talk to.

    The journey with the doctors has been very unsuccessful and made me feel even more crazy. I have been to countless doctors. 3 regular doctors 2 GIs doctos-as far as tests I have done un upper endoscopy came back normal, I have done abdominal CT which was normal. and I had a colonoscopy came back normal. I did several stool tests for fat in stool all normal. And bloodwork all normal. I had an abdominal MRI as well which showed small gallstones and sludge. so they recommended I remove it as I am only 30 years old and could lead to complications to future with stones-I am 3 weeks post op from gallbladder surgery and still experiencing all the left side pain still 😦 which makes me feel so hopeless. I have an appointment with another GI in a few weeks because my last one just didn't seem to care anymore. Once I did my colonoscopy with the last GI he said I am going to try you on CREON to see if that helps anything which freaked me out because that's for the pancreas and helps with EPI. I am on it and have been for about a month. No big changes with taking that. Has anyone else tried CREON?

    I know have horrible upper back pain like pretty much any time I do anything wash dishes go for a short walk...pain. My surgeon for my gallbladder referred me to see a spine specialist ( I got next week to see them) but this stuff has to be all be related and I don't understand why the doctors don't seem to want to see that. I have had other strange symptoms beyond GI symptoms though. I experience some dizziness/elevated heart rate upon standing and I have had a lot of twitching/ pulsating in the upper abdomen and twitching in all areas of my body, my thighs/calves, buttock, sometimes in my arms. Which I think could possibly be again from malabsorption and vitamin deficiencies and not getting the right nutrients. When I told my primary doctor I was having dizziness upon standing he recommend I see a cardiologist so I did that and wore a heart monitor for a month and the cardiologist thinks based on my heart elevation upon standing that I could have POTS. There is a link between POTS and SIBO which I actually did test positive for after I took breathe test. I am going to take a round of antibiotics for this to see if it helps but I wanted to remove gallbladder first prior to starting the antibiotics incase the gallbladder was contributing to SIBO.

    I just feel absolutely helpless and so very sad and depressed. I actually got engaged last May and just a few short months I started to experience all of these symptoms. This should be such a happy time with my fiancé and planning our wedding but instead I spend most of my time obsessing over this stuff which I hate to do. I have such a wonderful Fiancé who has been so supportive during this time, but It has affected our relationship and I feel so bad for him because I know all of this weighs on him. Especially seeing me sad and hopeless. I know no one has any actual answers, but it just feels good to talk to someone that can relate because I truly felt crazy and to read this blog saddened me that others were experiencing this, but also made me feel less insane that these things I am experiencing are valid and real.

    I still think despite the testing that it could be pancreas related. I think the biggest issue with the pancreas is it is so hard to detect things in early stages and it is tucked so deeply in the belly that scans just have a really hard time seeing it. I am hoping my next GI takes me seriously and continues to fight for answers because I feel like up to this point no doctors take me seriously.

    Random, but has as anyone in this group had Covid? My cardiologist says POTS can be induced from Covid and cause a mess of GI symptoms. Not sure if there is any correlation here to what we are all experiencing but wanted to ask.

    I wish everyone well and I am here for everyone in this group if they have any questions or just want to chat because I know how challenging it is facing these symptoms and I also know the burden of not wanting to put this on your loved ones and family and keeping all these emotions/fears/anxiety inside. I'm sending strength to you all!


  • Posted

    Hey everyone what happened to this thread!? I am suffering from all of the same symptoms and being snuffed by gastro departments! Test after test is coming back negative but I am still sick unable to process food and losing weight rapidly.

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