Do I believe docs??

Digestive health
1

Hi I've posted on here a few times and still trying to work out what is wrong with me! Had upper left problems for 6 years. Started around age 26. I used to drink a lot from about 20 until last couple of years. Prob a bottle of wine most nights and spirits on weekends. I had a 9 month break during each of my 3 pregnancies.

Always suffered from ibs from a child but usually pain is low down. I am a very highly stressed person and I suffer anxiety, and OCD! I have been also called hypochondriac many times!

Anyway upper left pain stated just below my ribs 6 years ago, slightly to my middle. Used to feel like an air bubble lump, was never painful enough to go to hospital but uncomfortable. Made me feel clogged up right to my throat even when I hadn't eaten, I had endoscopy, ct, ultrasound lots of bloods and nothing found. I put up with it and it disappeared for a year when I split with my ex and I was out a lot drinking every day and had no pain, no worries no anxiety attacks for the first time in my life I felt like nothing worried me!

Then I met my currant partner fell pregnant after 5 months with my 3rd child no pain still until about 2 weeks after her birth via c section then the horrible annoying pain I thought had gone forever returned. I am in a stressful relationship with her dad and it's very on and off so I know that doesn't help.

Anyway in the past year and half the pains are worse and I've been googling and googling and it all links to chronic pancreatitis! Docs think I'm mad, I've had colonoscopy, more bloods, detailed MRI of pancreas, stool tests all negative so I'm told no way it could be!

The original pain I agree could be bowels as when I press hard and massage the area it releases gas and really helps me, but I now experience shooting stabbing pains under left breast, in my side and back and they only last a second or two but are quite strong. Also left side sometimes feels like my ribs are bruised although they are tender to touch it's not excruciating and my daughter can still jump on me fine!

I am mainly constipated sometimes with mucus but always dark brown stool never pale, I never vomit either. The pain is 100% worse day after alcohol but if haven't worked out if any foods make it worse I seem to be able to eat really fatty things and no trouble.

Sorry for long post but it's getting me down so much and I just want to know what's wrong with me! Just want to know it's not my pancreas soo can stop worrying so much!!

2

Hey Natalie,

For the last 6 months I've been in a similar situation.  25 years old, big drinker up until this year, had IBS since I was 17-18.  In January started getting left upper back pain, nausea, loose stools etc.  Since then nausea has gone away but still having mild to moderate upper left back pain and loose, sticky paler than normal stool (not yellow but not dark either).

I too convinced myself it was my pancreas and had to argue with doctors to do more testing based on my age and history of IBS.  I also haven't lost any weight which you would expect if the loose stool was really from malabsoption.  Had bloodwork, ultrasound, CT scan with contast all of which came back normal.  I'm going for an MRI of my back next week and getting an alternate opinion from a new gastro who I'm going to push for an EUS and fecal fat test.

In the meantime I've accepted worrying will really get me nowhere.  My symptoms though annoying are nowhere near debilitating and even if this was CP getting upset won't do anything.  I've been proactive and started eating a lower-fat diet, taking supplements high in antioxidants such as grapeseed oil, tumeric and lipoic acid, taking multivitimins, staying hydrated and avoiding alcohol.  I've also continued to try and exercise as much as possible.

I look at it this way, I'm going to keep pushing until all available testing is exhausted and hopefully it all comes back clean.  Worst case scenario if there is damage to my pancreas my hope is that if I start working on behaviors to treat it now I might never have it progress to anything bad.  Best of luck, I know this is a scary disease (and I spent many days physically sick with worry over the future if this is what I have), but at the end of the day it really does no good and you're better off pushing for more testing, enjoying your health while you have it and adjusting your lifestyle ahead of time.

3

Thank you for your reply. Please let me know the outcome of your tests. It's so frustrating docs won't do anymore tests on me now. Say it's just ibs and splenic flex ire syndrome (form of ibs) I have looked into gastritis too and the symptoms we both have do sound like it could be that which I would prefer as it could heal! Although endoscope was clear it was at the beginning so may not of shown much. They won't give me another! I'm hoping as pain is manageable and I've defiantly never had an acute attack that it's not my pancreas, no history of pancreas probs in family, all my dad's side are heavy drinkers and all healthy! My mums side suffers ibs but no pancreas issues.

I do have a very bad diet which I need to change and rarely do fitness as I'm 5ft 7 and 10 stone so healthy weight not lost any. But I should start looking after myself more! Just horrible being scared to drink incase it is pancreas! But after 6 years of it and continuing to drink heavily through most of those 6 years till recently I would if thought I would have terrible pain and scarring showing on MRI.

Just people's stories freak me out as it's so hard to diagnose!!

Good luck with your tests, I've been discharged from specialist now so don't think my GP will refer me again

4

Any chance it could be GERD, acid relux.  I have that and it can cause all kinds of weird symptoms. I feel like I am having a heart attack sometimes, its acid.  I get bloated and have gas, its acid.  Hope you can find the answer.  Good luck

5

Thank you. I do get heartburn but not very often, I used to be such an idiot in early 20's dieting all the time and just drinking a bottle of red wine in the evening so it wouldn't surprise me if I've caused a lot of acid damage somewhere! I've not drank wine for months now still to clear spirits if I do have one sometimes they still cause me pain sometimes not.

The sharp pains literally last seconds but stab all in my left side, back, ribs and commonly just under left breast. Not painful enough for a hospital visit as they go as quick as they come! Just so strange! I do find lying quietly on my back rubbing my tummy helps and relaxing (when I get chance with 3 young children) helps too!

6

Hi, I have all the same symptoms as u but I also have had pain in my throat for over a year and the electric shock type pain all over including my arms finger legs and toes, most symptoms are abdominal and back though, I wake up feeling like Iv been kicked in my left rib age, I was in hospital with horrendous abdo pain which was high up and radiating though to my back, it was non stop for 3 weeks.... I also had nausea and blood in my vomit.

Now I still get pains everyday but I can manage them. Iv had cut mri blood tests still test eus and all normal apart from liver function tests on occasions. But a specialist did take a second look at mri and did say my pancreas looked plump.... Which then he said must be normal for me.... I to am aware it can be hard to diagnose.

7

So you haven't yet been diagnosed then either? So many of us seem to have similar symptoms and no diagnoses perhaps we all have something else??!! So frustrating I just want to live a normal life! Had a couple of drinks last night and in pain on and off today! Really getting me down. Think I'm just going to have to cut it out completely. Perhaps I should get second opinions on my scans

8

At least it's good to know none of us are in this boat alone. Hopefully we all end up with clean bills of health.

9

I really do hope so!!

10

Sorry to hear about you pain, but remember you are not alone in this battle.  I've been fighting CP for almost 3 years.  Some suggestions I can make would be first to stop all alcohol intake. Do not have anymore as it can make a bad situation even worse.  Watch your diet staying away from fatty foods along with complex carbs.  For your anxiety I can suggest mind based stress reduction, which helps to take focus off those things that cause anxiety.  Good luck and God Bless.

11

Thank you. I haven't yet been diagnosed with cp. I'm hoping I don't have it! I'm sorry you do. All my tests are negative and my only sympto is pain after alcohol in left side and back. No foods hurt me and I have normal colour stools which are always constipated. I'm praying I do just have ibs

12

No I havent.... When I started with theses symptoms, my doctor dismissed me from the start and said nothing wrong... Without even a blood test!

This made me use the Internet as self diagnosis.... I had every single symptom of pancreatic cancer.... (Obviously the Internet is designed to scare the poop out of u) I fought at the docs everyday till they did something ( I was in a tremendous amount of pain blood in vomit ect,

Still didn't send me for scan... I had to fund myself at private hospital, Iv spent £4,000 on tests, scans, laparoscopic op ect and still nothing!!!

was so relieved that tumor was ruled out but still convinced it's my pancreas.

I was told after a double cheek of my mri that my pancreas did look on the plump side... But was then told that must be a lot of healthy tissue, regardless of my symptoms and pain.

13

So sorry to hear this at lease in uk it's paid for but they don't give tests out very easily and have to wait for ages. I'm still convinced mine is pancreas too. Hoping it's not obviously but I can't see what else could make the pain only come bad after alcoholism the places it does! Google just points to pancreas!

14

I am in the uk... I paid because my gp wouldn't do anything for me... Even though I was in so much pain. So then I had to fund it myself in a private hospital.

Nhs are shocking!!! ( I know they do a lot of good but they also do a lot of Neglecting)

15

Oh really? Mind you I was tempted until I finally got refered to a specialist who I told about my pancreas concerns and although she looked at me like I was crazy she ordered all tests to rule it out, MRI of pancreas, bloods, stool sample, and even a colonoscopy. But as nothing was found I'm now discharged again with ibs diagnosis and no further appointments! So to see one again I'd have to go through the process of finding a GP to refer me which took me a year I'm just going to give up! I'm thinking if it is pancreas at some point I will be in such bad pain I will have to go to a&e and be admitted! Then they might run more tests!!

16

If it was your pancreas the pain would be epigastric and radiating to your back. Pain usually starts out in the 2-3-4th hour after eating as the pancreas is activated post prandial when food reaches the small intestine. The pain is also felt in the lower back as well. Does not sound like your pancreas as all.

17

Thank you. Only thing that causes me pain is alcohol intake. Food actually seems to help me and eases the pain. I get no pain at night really, it's always worse in mornings when stomach is empty. It's the shooting pains in ribs, sides and back that seem to be typical of cp but perhaps they are gas pains! Thanks for reply.

18

Sounds like your liver. I'd quit drinking.

19

I've had many tests on liver. It's fine

20

Hi Natalie,

I know I've messaged you on here before. Like you I am suffer with left sided pains. Under my ribs, epigastic, on my life side (actual side of my body), my back and my upper back. I have pain after eating on my front directly under my ribs and them it moves into my back where it will

Stay for most of the day.

I have had loose stools which are yellow/light brown and float. Even now they have gone normal again the still float. I have undigested food in my stool. I have wind, bloating, dizziness, fast heart rate, floaters, tinnitus, light headed feeling, shaking, nausea.

My bloods are all normal appart from a vitamin d deficiency (now normal) calcium deficiency (still not normal) and a constant fluctuation of my ALP level.

My stool sample - feacal elastase -normal.

I've had the following tests- ultrasound x4, MRI, MRCP.

A couple of months ago I marched into my consultants office and demanded a feacal fat test, HIDA scan and an EUS. All of which they agreed with as long as when they were all normal I moved on and forgot about Chronic pancreatitis. I agreed.

Now my pains all started last year after the birth of my 3td baby, by section, but on my right side. I had pain attack after pain attack. My dr at the time refused to send me anywhere for help. Only when my pain moved to my left side did I start kicking off. So in my mind my right sides pain triggered my left sided pain and it always go that way now.

I've had my EUS - which I would recommend you try and get if you haven't already it's the only proven test appart from an ERCP which will diagnose early chronic pancreatitis. My results, of course we're normal.

My HIDA scan shows my gallbladder as low motility, my ejection fraction was 30%. I am yet to see the consultant, due on 6th October. But I've been reading and low motility and SOD can be symptoms of... Yes you guessed it, chronic pancreatitis. I am now very scared even thou my tests are normal that I do actually have it. It's driving me crazy!! I'm in pain every single day, after every meal! I just don't know what to do anymore

I just wanted you to know that you aren't alone in all this. We are very similar. 3 kids, last by section etc.

I'll keep you updated on my mission to be diagnosed!

Take care! Gem