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
pj15429 sara61158
Edited
omg!!! you all just described what has been happening to me.
I experienced a period of stress last year and started having mid back pain. I worry about pancreatic cancer too.
I have pain mainly in the left side of my stomach, the pain wraps round my left flank and left side of my upper back after I have had something to eat. It does not have to be a lot of food. Food causes me pain and it does not help that I love eating. Pain can be any where in the stomach. I lost a bit of weight but I am gaining it back .
Other symptoms are
headaches
burping
indigestion
farting
Left arm, left shoulder blade pain after eating. starting to feel it in my right shoulder too. Painful spot a few centimeters from my shoulder blade after eating
Sometimes, I have to poop after eating. Sometimes stomach just rumbles and I have to fart after eating to feel better
different consistency of stool, sometimes formed, sometimes mushy.
Floating stools
I have also seen slight oily film over toilet water after pooping
I have had the following tests
1 CT scan (abdomen and pelvis) - normal
CT scan of my chest - normal
multiple chest xrays and 3 abdominal xrays - normal
6 ultrasound scans. - normal
2 MRI of the abdomen - normal, 1 found gall bladder sludge
CT and MRI of my brain because I suffer severe headaches in different parts of my head - normal
Colonoscopy - normal
Capsule endoscopy - normal
Endoscopy x 2 - normal
H. pylori test - negative
1 MRCP - normal apart from sludge in gall bladder
About 10 blood tests from my multiple A n E visits. A and E doctors do not do anything once they see the investigations I have had. I even took myself to another Accident and Emergency outside my locality just to seek another opinion. Everything was same.
I feel like I am at the mercy of doctors. I have been shouted at, (even by a private doctor), ignored, told to see a psychiatrist because they think i have severe health anxiety. I tell them I am usually a happy person, my symptoms are giving me anxiety. I have had to change my GP because he stopped listening to me and the new GP is starting to act out. They all tell me the same thing "you have had a lot of tests, what else do you want!"
I have been referred to the pain team and I am currently waiting for the results of yet another MRI of my spine as I have now developed back, hip, groin and buttock pain.
I am tired of complaining to my family members because its tiring and everyone has their problems to deal with too. I feel they are tired of listening to my health complaints. I begged for an EUS (endoscopic ultrasound) but I have been told I do not qualify for one.
I hope we get answers soon as we cannot continue to lead our lives like this.
andrea64883 pj15429
Edited
This is awful, have you seen pancreas specialist or general GI consultant. I was advised to try swap to pancreas specialist as they would spot things general GI would miss. problem is how do you do that in UK when most specialists want GI or gp referral.
What have they said about sludge? is that not a concern of causing issues in pancreas?
pj15429 andrea64883
Posted
They do not think it should be causing me all this pain. I do not have any more money for a private pancreas specialist consultation. I have seen 3 GI consultants, 1 GI surgeon (1 sits on the Multidisciplinary team for pancreas problems in my NHS trust). I even wanted to pay to see another doctor privately but he said no, my case had already been discussed with him and he did not think there was no anything he could do differently. It is very awful. I have just learnt to live with it and hope that God takes the pain away soon since Drs can no longer help me.
suzanne35053 pj15429
Posted
hi to all on this thread. i just wanted to say i feel like you've all written posts i could have. Symptoms all so similar. I've had issues for years that were finally put down to a inflammed non functioning gallbladder. had this removed in March and was ok till a pain episode similar to a gallbladder attack put me to A&E. Since then symptoms have come back including bike reflux, back pain, left shoulder pain and under left rib which immediately makes me scared its pancreas. Ive always suffered from a sensitive tummy where id be running to the toilet in agony if i ate something that triggered me (and often there was no rhyme or reason to this!). I'm just so fed up of always feeling pain and my mind just goes off into all the bad things it could be. Before it was discovered my gallbladder wasn't working i saw doctors who said it was in my head and made me feel i was stupid . i cant face that again but have booked a phone call apt tomorrow as i cant carry on like this.
andrea64883 suzanne35053
Edited
Suzanne i'm so sorry you are feeling this way, welcome to the club. Its not fun.
I have read that people can still suffer a bit even once gallbladder has gone, not sure how or why. Hopefully you can get answers.
I like all of you have been reading loads of old posts and looked on both gutsuk and national pancreas foundation sites the biggest thing people say is keep pushing the doctors and get to a pancreas specialist as soon as you can. i just don't know how to do this as lots of drs i have looked at want a referral, also it obviously comes at a cost going private. I do have private cover but its limited and there doesn't seem to be any specialists here bust strangely we apparently have a great NHS liver and pancreas centre.
let us know how you get on, remember self advocate. you know your body. Thinking of you
Andrea
suzanne35053 andrea64883
Edited
Andrea thank you for taking the time to reply. Yeah Ive heard that for what i had biliary dyskinesia rather than gallstones, removing the gallbladder isn't a guarantee symptoms will go. The consultant even said before my op! yes you are right re being an advocate for your own body. Ive asked for a doctor that was good with my son so I'm hoping she's as proactive with me.Its horrible we all feel like this but such a relief to find others that know what i mean! Ill let u know how it goes. x
andrea64883 sara61158
Edited
Hi Sara
I'm so sorry you now feel at a dead end,
I wish I could offer some words of
hope but i'm not sure what else to
suggest.
I'm in agony today, interestingly i did have poor lunch choice and i'm wondering if this had triggered the pain. I had to go into work for catch up and only lunch option was tuna mayo sandwich. I didn't want it but im trying to make sure I eat due to weight dropping and i have to keep eating gluten to make sure my test next week for coelic is not waste if time,
I think I'm now paying the price for this, which upsettingly just adds more evidence to my pancreas being the issue. the pain is unbearable like something is taking over the left half of my upper body.
Ive started supplements this week grape seed extract, Vit C and curcumin apparently good for inflammation and pancreas issues.
not sure if you take any of these bit might be worth a look
oh and yes i do get strange breath, along with my funny odour. god i must stink. how has this happened to us 😦
andrea64883
Edited
My day just got worse, i've been using a hot water bottle for months mostly for the back pain. , I have had it tonight and I didn't realise but i've actually burnt my back. I just had to put burn cream on. not sure if some hot water got on me!!! shows how bad my pain was though as all I was thinking is it was taking the edge off a bit
Really fed up tonight. pain is really bad, I googled some more stuff about my tongue, my odour, my greasy poo and I keep feeling how thin i'm getting and it is obviously malabsorption/malnutrition but nobody else seems that concerned that i feel like im fading away.
i would go to a and e but waste of time. i went 2 months ago, waited 8 hours doctor then told me it wasn't cancer,( i never said it was) and gave me buscopan and sent me home.
pj15429 andrea64883
Posted
Hello, maybe go to A and E and show them the burnt mark on your back. It may prompt them to do something. wishing you the very best
andrea64883 pj15429
Edited
Hello
Sounds like we are all in the same boat, i just don't get it. Ive been up all night with the pain, I can't believe how i've gone from being super healthy, even during my pregnancy i was hiking up
mountains in the Lake district to literally feeling in agony and like i'm fading away. i might go to A and E but the last time they were so horrible to me I'm not sure I can face it.
where are you based? I'm in liverpool we have NHS specialist centre here but you need a referral.
Like I said to Sara I wish I could offer some words of hope but I can't.
I have another week for endoscopy bit its not going to help as not EUS.
lets hope we all l have a better day today
pj15429 andrea64883
Posted
It's sad isn't it... i always tell my friends I want my life back.
I am in Essex. Have you seen any specialist in pancreas specialist in Liverpool?
How are you today?
andrea64883 pj15429
Posted
Hi i've been in lots of pain today, ive tried not too eat and just been having water ad i read on a few places if you are having flare let the pancreas rest. Although i did take baby to swim and put up some halloween bits to distract myself.
I'm behind you in my testing so i'm petrified that i don't ever get answer/diagnosis or that i get a diagnosis That it is chronic pancreatitis which just sounds horrendous.
im so worried it is that ( deep down i know it is) and the impact it will have on my family.. me and my partner are really outdoor types, we hike , cycle .. and love eating out , from what ive read all that will change let alone just day to day diet, psin, my job etc.
I said exactly the same as you to my friends and my partner today, i just want to be the old me.
i try to keep busy especially with baby groups etc but i find myself being so jealous of the other mums, thinking why me. i know that is big pity party but its how i feel at times.
no i am currently seeing private GI consultant at Spire but he is generalist and not specialising in pancreas. i will hopefully be able to get him to refer me to one of his colleagues or into liverpool specialist centre after my endoscopy next week which i know wont show anything as it doesnt see pancreas. however i have to persuade him as he thinks i have muscle pain. my left back and side are luterslly throbbing/pulsating as we text.
how are you doing? do you get that sort of pain?
sara61158 pj15429
Posted
@pj15429 I am in Essex too. where abouts are you? What Drs have you seen?
S x
andrea64883 sara61158
Edited
I have just requested a copy of my CT scan results from few weeks ago so I can double check what it says. My consultant said it was all clear apart from tiny cyst on liver which was of no concern.
alexis20017 andrea64883
Posted
Andrea, I am so sorry to hear of your recent struggles, all of us really. 😦 Guessing you didn't end up going to A&E? I have been 3 times over the last 4 months. once for my CT with contrast which found nothing other than a tiny ovarian cyst. But my symptoms continue... and I have even started to notice lately a slight oily film in toilet bowl after bowel movements. I have never really looked hard before so I do not know if I am looking too hard for something that may not be there? Good that you got a copy of your CT... I was worried too about never having seen the actual report just hearing from the docs that it came back fine but I finally got a copy of it and it says all my abdominal organs show no abnormalities... so hard to believe when we feel such symptoms. Do you have rib pain? I seem to have pain/discomfort on my rib bones and my upper back feels so tight with muscle knots (could be from stress and tension). Thinking of you!
andrea64883 alexis20017
Posted
Hi Alexis
i know its sad we are all struggling so much. No i didn't go to a and e in the end, my fiance said they will just leave you there do bloods and send you home again, but i am in lots of pain.
my pain is predominantly in my back on the left side (id say middle back) its like throbbing/pulsing and it is just getting worse as it was originally just a niggle that would come and go. it is now also in my front left side under my ribs moves from my boob to further down. Id say back is the killer though.
I noticed my stools as i had to give sample for the h pylori (?) test. I realised then how greasy and seedy they were, i think the seed bits are undigested food. i am now obsessed checking how oily they are and there consistency. i would say they are still brown and sink they don't really float. i also don't have lots of diarrhea or vomitting but i do feel nausea a lot.
sorry far too much info.
I just dont want it to be my pancreas but everything i read just confirms it even more.
alexis are you seeing a specialist at all?
alexis20017 andrea64883
Edited
Hi Andrea, no it's ok, my stools are pretty similar! Right now I have a GI doc who I really like. I've voiced my concerns too about pancreas but after a clear CT, ultrasound and relevant bloodwork she doesn't seem too concerned there. Thinks it is a functional problem. I have a colonoscopy next Wednesday and if that finds no root of the cause, I am going to press her to refer me for more tests. I would like to get an MRI/MRCP. We'll see. Until then just gonna hang in there! I hope that for all of you too. 😃 Hope we can all continue to stay positive and keep each other updated.
andrea64883 alexis20017
Posted
Alexis
Have you lost weight at all? how is your appetite? Good that you like your consultant i think that makes a difference. I am just bot sure about mine, everything so far has been on zoom which hasn't helped. will see him next week though as he is doing the endoscopy.
I just realised we will both be getting probed from different ends next weds
Andrea
alexis20017 andrea64883
Posted
I had lost around 10 lbs, believe that isnt even a stone. but my appetite was down I believe from stress. Been trying to eat more and im slowly gaining. I hope you can get with a specialist soon. And wow!! Good luck to you... keep us updated on how it goes, I will let you all know if anything comes out of my colonoscopy (doubtful tho).