Hi, I'm really hoping someone might have some thoughts about this or have something similar. Anything at all would be hugely appreciated.
Just over a year ago, maybe early spring 2016 I noticed an aching pain behind my sternum, (upper abdomen centre just below the bone). It was there first thing in the morning when I woke up but it would fade after a while. I ignored it for a few months until it worsened then went to my gp. He eventually put me through to a gastro. Who did some bloods etc and said it was probably reflux or hypersensitive oesophogus. Anyway, he gave me some anti reflux tablets which did nothing. As time went on the pain got worse and led to me waking up in every night shivering with sweat and a very specific pain that felt like it was pushing down really hard on a point at the top of my epigastrum (if that's the right word) right at the top centre of my abdomen just below the central chest bone. This got worse and I hardly slept for more than 3 or 4 hours a night before being being woken up by this pain which started going round to my back as a sharp ache along the shoulderblade. I would be flushed, sweating, dizzy nauseous. It was really horrible, none of the meds did anything. I also developed a metallic taste in my mouth for several months and had extreme fatigue and skin irritation. Although during the day it tended to settle down. I was a total mess and my gastro ordered ct scans, bloods, colonoscopy and endoscopy. My BM's were also all over the shop. I was terrified that it was going to be something serious like pancreatic cancer. Anyway, after the tests my gastro came into the hospital room with the ct scan results and said they were clear and I broke down in tears, I'd just had a young son and the thought of not watching him grow up was on my mind. Anyway, he prescribed me with amitrypyline, ranitidine, esomeprazole, diazepam and a bunch of other sprays and pills. He suggested it might be reflux/ a hyper sensitive oesophagus. Anyway, my initial happiness turned to despair as nothing worked in any way and I kept getting sicker (this was around august 2016). Since then I've had acid reflux tests which haven't shown any acid reflux and the pain has been getting worse. Every time I saw my gastro he'd say why don't you try a bit more of this drug or a bit more of that. Nothing touched the pain and attempts at going dairy free, caffeine, processed meat, anything with high fat, chocolate free did nothing. This year the pain has been changing - getting worse and I've also noticed a fair amount of flatulence and wind/gas. The pain has also become less specific in time and location and started to drift into the daytime. My BM's go from constipation to explosive diarrhoea and now my whole epigastric area feels like I've been kicked in the abdomen from the second I wake up and then to a lesser extent when I go to sleep. My stomach aches as well (this is all on my left hand side I should mention). I've stopped working because of it and the last few months have been terrible. I kept asking my gastro if it could be something more serious or even ibs and he said 'no' and said they'd already run the tests and they were fine yet week by week I get worse. A couple of weeks back I broke down completely in front of him and asked if there were any other tests I could try. He said a PET/CT scan. I've had the scan today (June 2017) but am in terrible pain and discomfort with constant epigastric and left stomach and upper back pain. Also constipation/ diarrhoea and wind/ gas. This week I made the mistake of looking up my symptoms on line and after hours sifting through every potential cause, including IBS, the only thing that was identical was the stories of people with pancreatic cancer. I figured that it couldn't be that as I'd had a CT scan last year, however after some digging I found out that those don't always detect it, especially if the Tumor is small. Im 45 years old, male, I used to be a heavy drinker and smoker (which I now regret more than anything) and I guess what I'm hoping is that somebody out there might have a chink of light to give me some hope during a very worrying time. I should also add the pain doesn't seem to change based on eating or BMs. I've been tested for Crohns and Colitis and infections. Thanks so much for your help.
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Chad01
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Chad, I'm so sorry you're going through this. Have they checked your gallbladder? Have you lost weight? I strongly believe if your pancreas was causing all of this, the tumor would for sure be large enough to detect and the symptoms would be relentless, night and day. Try to take a deep breath and not worry. All the worry and stress could be a direct cause of a lot of it. The brain is a powerful thing and anxiety can produce illness symptoms. Especially at night when everything is quiet and your mind has a chance to wonder. Remember, breathe and think positive thoughts. You're gonna get it all worked out. I'm praying for you.
My weight has fluctuated over the last year at one point I lost a stone (a lot for me as I'm quite small and skinny) but put the weight back on. In the last month or so I've noticed that I've lost weight again but only about 1/2 a stone at most. I think they checked my gallbladder last year but will go and have a look through my papers this morning to see.
I know the worrying is doing me no good, it's just so difficult to stay positive sometimes. Thank you for getting in touch though it means a lot.
Chad just a thought have you had any stool tests? I have just had a Comprehensive Parasitology stool tests done by Genova Diagnostics through my nutritionist, and I have low lactobacillus which is a good bacteria and a serious overgrowth of candida and two bad bacterias all causing the same symptoms. The bad bacterias could mean I have the SIBO (small intestinal bacterial overgrowth). It was not cheap but now I know what I am dealing with and I think it might take a while to sort it out
Hi Moijoy, thanks so much for replying. I remember giving a stool sample last year. I can't remember exactly what they were testing for. I know it came back clear. I'll see if there's any mention of what they tested for on the paperwork. It's interesting you mention candida as I did have recurrent balanitis last year and again this year which was treated with steroid cream. I don't know if there could be any connection with that. I'll see if I can find the results of the stool test. Thanks for getting in touch. I hardly slept last night and found it hard keeping myself together whilst getting my son ready for nursery this morning, these replies mean a lot to me. Thanks again.
Hi Chad01, just a simple question for you: when you did the prep for the colonoscopy to make sure your bowel was completely empty, did you, by any chance, notice an improvement in your symptoms?
It's difficult to remember because it was last year and my memory is absolutely dreadful to be honest, but I do have a slightly fuzzy recollection of feeling better after emptying my system completely. It's so difficult to remember these things. Last year I started writing notes each day on how I felt but I think this might have been before I started writing everything down. Although when I went to another gastro for a second opinion early this year he made a point of telling me that writing notes seemed like very strange behaviour indeed before dismissing me and telling me just to go with whatever my original gastro says. A very expensive 5 minutes. Anyway, I'm going off the subject, thank you for so much for replying. Are you thinking that there's a bacteria or something similar which might be causing the problems? Thanks. C
No, I wasn't thinking of bacteria but something much simpler, namely that it's highly possible you aren't emptying your bowels fully - even when you think you are. This is a two-part story.
A colorectal consultant told me that the digestive system is basically one long tube running the length of the torso and when something goes wrong in any one part of it, it affects the whole thing from top to bottom - particularly if the problem is incomplete bowel-emptying.
Almost certainly due to a female hormone supplement I'd been using for several years, I lost 'gut motility' which meant that my bowel just couldn't get rid of everything it should have done. Results were severe pains everywhere: upper chest area, back, upper and lower abdomen, heartburn, indigestion - you name it, I had a problem there and, like you, my bowels were all over the place ... and the gas just doesn't bear thinking about! Having given up the hormone therapy 4 months ago, I'm now well on the road to recovery (about 80% better), I don't know whether things will improve further or whether there's a bit of permanent damage so, fingers crossed.
Last year, my husband had been complaining for a few weeks about continual and worsening low abdominal pain, then he began to get very painful heartburn and acid indigestion. It all got so bad and he was in such pain throughout his whole torso that, fearing it could be a cardiac problem, we landed in A & E in the early hours of one morning. To cut a long story very short, after loads of scans/tests etc, he was eventually sent home with a box of Movicol (laxative) which he had to take 3 times a day for a week and then one dose per day thereafter. It worked like a miracle and he's had no problems since. The reasoning behind this diagnosis was that all the pain was caused by wind (just as in my case) which, in its turn, was created by stool stuck somewhere in the colon, apparently this happens to huge numbers of people as they get older (duh!) no matter how good your diet is.
I'm not saying this def the same problem for you, but when I read your post this morning, bells started ringing all over the place.
Why don't you stop all the meds you're taking, go out and buy some Movicol (Laxido has the same ingredients, just a different brand name) and start clearing out your system, it might take a few days to really get to work, but it has to be worth a try?
Hi again. Thanks so much for replying. That's a really interesting story. Yes, without going into too much detail my BM's have been pretty 'variable' for quite a long time. Often going from constipation to diarrhoea in the space of a few days and it coincides with the period everything else has been going on. I guess I've always thought of the GI problems to be a symptom of what's causing the epigastric pain rather than the other way round. If that makes sense. I've also had periods where I've brought mouthfuls of food back up into my mouth after eating where it felt like there's a lump stuck at the top of my stomach/oesophagus which came up into my mouth when I burped. I'll definitely look into this more. I told my gp a while back that all the different drugs were doing nothing to help but all he seems to do is play with the dosages
Thank you so much for your help. I've had a pretty awful day today and have been in tears when tidying up the drawings my son did for me and Just to be able to think there's another outcome to all this, other than the worst, is a very kind gift (if that doesn't sound too dramatic). Thankyou
I think this could be COSTROCHONDRITIS ? The fact your BM are all over the place could also be partly due to anxiety and worry. Please have a look at this. It causes sharp pains around the sternum. It usuallly goes on its own and the main meds are ibuprofen. Have a look at the symptoms on the NHS website and see what you think. I have had it so know what its like.
Thanks very much for replying Alice. I'll make a note of it to ask my gastro. I guess the only things that I'd question, looking at the description of it on the NHS page, is that my pain doesn't appear to get worse with physical exercise. Also, I guess it wouldn't explain the aches going down my left abdomen/ back and GI issues? But that's just from a very quick scan on the NHS page. I'll do some more proper research this morning. Thank you ever so much for getting back. Just to feel like there's other possibilities helps a lot today. C
No but it might be two things you are dealing with and the stress can cause IBS to get worse. Just a thought ? My pain got worse at night and was worse if I lent on that side. It got a bit better when I took Vitamin d too, you may be deficient. They can test for that at the doctor.
Its just if it is near the sternum it might be that.
Hi Alice, I was just wondering how long your COSTROCHONDRITIS lasted for? Also if it got worse after exercise and if it was worse at any times of the day or night? Apologies for all the questions. Best wishes and thank you again. C
Not sure if I replied. Worse with exercise as inflamation of ribs area. More noticable at night. Treatment was ibuprofen and rest and vitamin d helped too. Ibuprofen only if needed though I try to minimise my drug intake. I tend to get it when I am stressed.
The chink of hope I can bring you is that, although we are all different, parts of your story rang true with me. I say hope because I have finally recovered from IBS (without traditional meds) and created a blog to move others forward.
The tight pain your are experiencing may be working like this (although this specific post talks about constipation and diarrhea) : sickofibs.com/ibs-symptoms/...
If this rings true for you, you may find other posts on my blog that can help.
Thank you Alison, that's a really interesting read. I thought I'd been dealing pretty well with everything until a couple of days ago but it's so difficult to look subjectively at what's going on sometimes. I'll have a proper look through your website this morning. Thank you so much for replying. Best wishes. C
Hi there Chad, some of what you have said above resonates with me as well. I have read Pagan's response to you and what she has is true with my case as last year I had another Colonoscopy in August (I originally had one in 1996/7 when I was first diagnosed with IBS). I had to undertake the 2 day prep where you eat a low fibre diet and then the day where you eat nothing and the liquid you drink empties the system. I have to say that for a while after having the procedure I felt fantastic. I then had a tummy bug in December last year and although felt terrible for one night and a day following that I felt fantastic. I then had a flu like bug for a few days in February this year and went off my food and again felt fantastic. What I am saying here is you empty your system and then feel much better.
My IBS has been quite bad for a few weeks now and I have had a lot of bloating and tummy pain - the area just under my breast bone has felt quite hard at times due to the bloating as has my tummy. I am now really looking at my diet as I have a feeling that caffeine and gluten may be a problem. Also, what I am saying here is IBS can make you feel absolutely awful and you start to think that it's something more sinister, believe you me I have thought this at times.
I really hope that you feel better very soon but just to let you know that are a lot of people on here that feel for you as we are all in this together. I would also certainly look at Alison Simpson's blog i.e. Alisonfromsickofibs.
Thanks so much for your reply. I've just got back from hospital last week where scans are clear but I've still got the pain. It's worse in the mornings and is really pretty severe. I'm back with my gastro tomorrow and will ask him about this. Maybe I should see if I can get referred to a nutritionist (or another gastro). Every time I mention ibs he just dismissed it. Very very frustrating. I'll keep you updated. Thank you so much again. I'll post a longer update above in case it's useful for anyone.
Hi. I thought I'd just leave an update in case it's useful for anyone. Last Thursday the pain got worse and I just didn't know what to do. Having looked up pancreatic cancer the night before, I got myself into state where I felt certain that was my problem. Reading people experiences with it, their symptoms matched mine exactly, apart from the jaundice and bloody stools. It was like reading my own symptoms diary from the last year. All the myriad of odd little symptoms fitted exactly with the progression of my own illness. Anyway, I went to gp and he took one look at me and rushed me up to the hospital. Also had mild fever alongside all the pain. Was a bit of a mess tbh, had got all the life insurance forms out and really assuming the worst. Up at hospital they did bloods etc and then a doctor managed to get hold of my PET scan results from last Tuesday. He told me they were clear of any cancer. I couldn't believe it and cried so hard that I think he probably assumed I had mental health issues as well. He said he didn't know what it was but not PC. He said the colon runs along a similar area to the pancreas and could be giving me the pain due to it spamming. He gave me some anti spasmodic pills for it to see if they helped and later I was discharged. I have never been happier or more relieved in my life. It wasn't until Friday morning at 5am when the epigastric pain became the worst I've had and I remembered that I still need to find a reason for what's going on. Back in to see gastro tomorrow. Will keep an update on here in case it's of help to anyone or they find a cause. Thanks so much again for everyone's responses. Best, C
So glad that your mind is now at ease, I think most people on here, including me, think that it's possibly cancer. Looking at diet is definitely the way to go.
Looking forward to reading your updates and hope that you start to feel better very soon.
Hi Chad. I'm so sorry to hear you're going through this. Reading through your symptoms I would recommend that you get a food intolerance test done since many of your symptoms and reactions could actually stem from inflammation caused by your immune system going into overdrive. I had many, many symptoms over a period of time that also made me think I had problems with my gallbladder, pancreas, bowel etc. I suffered pain the centre of my abdomen, back pain, palpitations, pain in my back that made me feel 100 years old, alternating constipation and diarrhoea, nausea, sickness, excessive wind, bloating, constant colds and infections and generally feeling unwell and at the end of my tether. Like you I went down the conventional route and had all sorts of blood tests, scans, meds etc that did nothing. After a trip to A&E thinking I was having a heart attack a nurse mentioned it sounded like a gastro problem. It got me thinking and I started looking up symptoms for food intolerances and noting what I was eating and how I felt afterwards. I notice you feel worse at night and early morning (a few hours after eating an evening meal?) The NHS do not research food intolerances enough and won't do tests but I tried a blood test through York Test that indicated I had an IGg immune response to a 'higher than average' number of foods (eggs, milk, wheat, gluten, millet, yeast, crustaceans and coffee). In desperation I cut these out from my diet big bang style and guess what? Three days later felt good, three weeks later felt normal again, pain gone, BMs back to normal. Over time I have tested reintroducing these items back in my diet but I get a reaction within s few hours so I know it must be these food items that cause those symptoms. When I went to my GP to discuss the test she dismissed it without even giving me a chance to explain. I just think our GPs and so called specialists don't know enough about these conditions. It's worth a go because you mention about skin irritations and this is another classic symptom of allergies and intolerances. In my mind, I think the inflammation to the whole GI tract caused by such reactions is what brings about the pain and symptoms from oesophagus to bowel. I think that when you get a blocked bowel giving constipation the diarrhoea is your body's way of trying to clear the blockage itself hence why it alnernates. Anyway, give it some thought and I hope you find answers. Good luck 👍🏼
Thanks so much for getting back. I'll keep that in mind. I've had a pretty terrible week and now my gastro is doing more tests for chronic pancreatitis as my pancreas turned out to be atrophied on the last ct scan. Another week of worry ahead. Will keep you updated. Thanks again.
Hi. Thought I should leave a quick update in case it helps anyone. Finally after pushing and pushing got an MRI done on the pancreas and it has very drastically atrophied. I've been asking about chronic pancreatitis for ages and kept being told it can't be. Now it looks like it is and has been happening for a year or two. Please push and push to get tests done and answers if you don't think your doctors are right. Best wishes. X
A quick update in case anyone comes across this thread. About 6 months, ago after carrying a dx of chronic pancreatitis and Behçet’s disease on my medical history, I had more investigations privately and was told I don’t have either of those. I do have a lot of gallbladder sludge but the jury’s out on whether that’s could be the cause of the pain and other issues.
I have since developed what I’ve been told is chronic bronchitis and rhinitis.
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