pancreatitis pain all through me even passing stools

Hello I am 67 female. Thank you for words of encouragement Reefsider.  Docs not dismissed me but consultants did and I had to ask for 2nd oenions GI wise and then a 3rd. I have a test next Friday at London and am waiting forna scan at Bournemouth and he said hed look down inside. I think you could be right re nerves. Thing called vagus nerve. Maybe something presses. But I was losing lot of weight up to steroids. I personally think its my pancreas caused from gallstones, lots of drugs dor mental health since 2002 ballooning me to 15 stonem then taking myself off as I felt awful on them suddenly. I was an alcoholic stopped 19 years ago, smoked up to 3 years ago. Plus I ate a lot of crap i.e. not healthy.  I think the worst is nott knowing whats going on inside, but reading pancreas forums I have majority of symptoms.  Your nerve pain must get you down and I presume you have meds to help. Doc tried me on Pregabalin felt awful and amityptiline dreadful and pain lower back especially worse.  Anyway, Ive waited 4 months for London test next Friday and saw 3rd gasto 7 weeks ago and nothing re the ct scan yet despite fact I initially paid private to see him, and he agreed to do on NHS as I am not rich ha ha.  I will ask my GP re nerological nerve pain. How nice of someone to respond to my lengthy post.  I have just got so down and have no life now and suicidal on and off.  Also now have two moles spreading...great ha ha..something else.  I live on my own with dog and 2 cats and if only they could talk!!  Thank you I just have feeling my days are numbered..hope not. Best of luck to tou too Reefsider

I just read your entire post and I am truly ashamed to have posted my story. You deserve so much more help. I thought I had problems ! My prayers go out to you and I hope they can solve all your issues.

I hear you. I go on yet people are EVEN WORSE off than me, but the worst is not knowing what is going on after 18 months and all tests stopped last year/xmas and bloods kept saying OK, except when blood not clotting and steroids (ITP) and then only discovered cos I took myself to A and E yet I had said to GP Im getting funny marks on my hands etc and teeth bleeding a lot, one nose bleed and urine infactions..then that diagnosed cos I took myself in!!  It makes one wonder!!  My prayers to tou too.

Hello 24 hr manometry seems I may have achalasia. Waiting for CT scan with 3rd GI 0n 18 Octber and see him 25th and he says he may be ERCP as something I know is wrong in stomach area. Sevre constipation now despite Movicol. Only stimulant bowel laxative works so seems bowel muscles giving up. Worse with fibre then it is just fatty bowl-fuls of porridge as I call it. Everything I eat just not getting absorbed either fats or sugas.  I cannot even now conceive what is causing what any more and such pain all day. All as I said started 2014 with gallstones then worse since colonoscopy april 15 and gallbladder op april 15. I honestly wonder what they messed up or what nerve damage caused.  Hope you are OK? read your messages. I too get very dark urine and itch. Moles and lumps red appearing more and more. Yet to ask re neurological pain. Doc tried me on Pregabalin for pain and I couldnt move my neck and lower back ache even worse and knuckles all stiff. I drink loads of waer.  I do know my bowels are a big issue too.  I keep praying but get quite despondent. ha ha

Hello Portacrean  Oh how I agree with you. I am sh*t scared too and if you are in as much pain as I am in areas especially eating, I feel like you that after 18 months I am getting neaer to the truth and soon will have someone do ERCP and discover pancreatic cancer.  Like yourself, I just feel that I have to get my affairs in order.  I agree so much give to cancer research etc but not enough done re the pancreas for it is an horrendous painful killer.  I pray so for you that your fears will be put to rest once they have helped you.  It is the NOT knowing what is causing what that is the most unbearable thing.  I am not like you for my two grown kids know my pain, but mostly I am on my own no partner etc and..no friends..for this has also diven me, the pain, mentally insane... You just sound off any old time to me cos I need to know I am not alone and yet I feel soo alone with whatever is happening inside my guts.  My MRI when I had pancreatitis showed all looked OK at Xmas but 3rd gasto I referred myself to said that meant nothing to him untill he looks down with endoscope.  I have been told tho I could end up after this being unable to swallow!!!  But I cant live like this and will take any risks.  I know when I had gallstones I did get awful pain and am sure looking back it was affecting my pancreas, but all has got worse for me since they removed the gallbladder.  I will keep my fingers crossed for you. Do please let me know how things go, as I will hope to let those like you who replied re my tests in a months time (sooner I wish). Dont say sorry.  x

Oh oh. You have a reply waiting for moderation. Sometime I can't figure out why they hold them up !

Just seems like nothing ever really changes. I had a heart bypass in 2004 , pericardial window in 2005 , another heart bypass in 2010 , prostate surgery in 2011 and bacterial infection in the blood requiring a hospital stay every 6 months after the prostate surgery. On top of that my oncologist says my bone marrow isn't making proper red blood cells. The first bypass was my fault for unhealthy eating. The second one was the surgeons fault. They said it was done poorly and just failed. Since 2004 I've exercised daily have eaten extremely healthy and still get all these wierd sicknesses. Like you , I'm by myself. My son died 12 years ago , my daughter lives in central Texas and my wife of 40 years dien 1 year and four months ago. So I just do the best I can. I'm just upset because I have led a healthier life since 2004 than anyone I know and I'm the one with all this c__p. Anyway I guess , if it's my time , then , so be it. You're right , it is a very lonely and scary situation. Now I'm told I may need stents . Like I said , it just seems to never end. Have a ct scan tomorrow and a hida scan next wednesday. If you need an ear , I'm always available. Bless you.

Hi guys I was reading your discution and thought to ask you my question. Around five years ago I had my galblader removed. I had a very sick and inflamed galblader. Due to the inflammation the Surgon had a hard time to remove it. He wrote in the chart that the galblader burst during the removal and few stones were dropped. But he thinks that he got them all. He then looked through the bile ducts tubes to see if there were any stones there, then he closed me up,

I was in hospital for three days and night with a drainage hanging in my right side. I did not have any pain until after one week that he removed the drainage. The pain was awful.

After the drainage removal I kept having right side itch and pain. For one year everyone told me they its beacuse of the surgery and it will be ok, but suddenly next year I woke up in the middle of the night with a severe pain and burning,

I ran to GI specialist and he did all the rutin tests, blood works and scans all were normal. So he could not tell me what was wrong with me. I even saw the fourth GI specialist and he could not tell me what is wrong with me.

I told them all the I am suspicious about my pancreas but none agreed due to normal MRCP and other test results.

My bowl movment changed suddenly to hard stool I became severely constipated.

Any time that I had the bowl movment I could feel it's passing through the colon and it would get extremely painful in the upper left side.

I had constant pain under both rib cages right and left that sometimes wrapped around my back. I had burning, itching and presure sometimes. I could feel the pain even by touching my skin on my stomach.

The worst part was I could not sleep on my back and left side beacuse of the pain I could only rest or sleep on my right side.

My mom had to scratch ny back but could not message it due to pain and scratching would ease the pain.

I kept losing weight beacuse I was afraied to eat and I put my self on a diet beacuse I belivied it could be pancreas.

For two years I tolorate the pain but last year the pain got little better and the constupation got little better but all the itching, burning and under rib cage pain never went away completely. No matter what it's always there bothering me. Sometimes I don't feel it and sometimes it's to annoying.

So I don't know what happened during the surgery l don't know if he left a scar, damaged the ducts, colon or any nerve there that keep casing me this pain. But I kept going back to the Surgon and teling him why did you check my ducts without my permission or asking for another specialist to do it. Beacuse the ERCP that goes through those tiny ducts has to be performed by the very experienced dr to avoid any scar or damage. He has no answer. I think damage is done and no one can do anything.,

I only need a miracle to be free ilof this pain.

Even now that I am lying on my right side I have the burning and itching pain that is under both of my rib cages and radiates to my throat and chest. I feel sore all the time it's like something never healed down there.

By the way I am 37.

😔😔😔😔

What you guys think about it do you also think that it could be pancrise or something else? Do you also have the same symptoms abd pain?

Thank you

Hello Kate oh mygoodness my dear girl you are the FIRST I have ever come across who has been experiencing such horrendous pain as I have since gallbladder removal last April 15. I know when I had gallstones for a year before I had awful pain.  I had the colonoscopy and gallbladder op April 15.  Then like you burning all up my back in my abdomen bowels on passing stools....if I ever did as severely constipated suddenly with gallstones and worse after removal.  Now laxatives and even they "burn" my gut and IF I go it is just fatty diarrohea.  I did lose weight.  But like you MRI with pancreatitis (which youwonder about) my MRI looked all OK and discharged in pain on eating etc and NOONE tol me to avoid fats.  Like you my abdomen can burn and itch and pain spreads all up back chest front to throat (but I do have gastritis and hiatus hernia)  I am on my 3rrd gastro consuktant but still waiting for CT scan that was 2 months ago and he specialises in ERCPs and hopes to go down that route as he said MRIs meant nothing to him.  I do not know if this is my pancreas still and tey to avoid fats, but even fruit burns, coffee tea and like you I believe someone did something wrong in one of the ops and even damaged nerve endings.  I was pooping OK before gallstones, but I get sooo hungry and crave fat and sugars and bad food but try to eat good as my daughter keeps helping, but pain is worse by end of day and worse if I poop and have eaten just as well tge burnning all through me will last for hours.  One biscuit "low fat" is awful One banana. My GP knows.  Do NOT be put down by them or toldit is in your mind and (like they told me) I am a medical mystery and "some things we cannot find answers to".  I am praying that soon the 3rd consultant will get my scan done as it has been 2 months now,  I am also having next week a 24 manometry where they put a tube down into your stomach and you wear it for 24 hours and eat.  It measures the opening/pressure into stomach and acid too.  I have got so ill as I said and told my kids and GP I will end it if noone finds anything soon.  The man who did the gallbladder op refused an ERCP.  When they did the op I was told they reesectioned/removed an adhesion from stomach to small bowel and I swear something went wrong. I have taken my case to The Health Ombudsman but I doubt if Iwill gett compensation for my 24/7 suffering. Usually there is NO pain in the night but is  if I poop even the tiniest bit.  After I eat, the pain in back/chest usually starts about90 minues later  and Ihave to go to bed early.  There is also a very tight "rubber band" feeling all around my ribs.  Please tell your GP and do NOT give up. Prster them. Write itdown and keep a copyy.  And see if she can offer you something ike Pregabalin, Gabapentine or Amytriptiline for nerve pain.  I am on an anti depressant and paracetemol but makes noo difference.  The pancreas is affected by gallstones smoking and drinking but even non drinkrrs etc can get pancreatitis.  For me it is the worst pain I have ever known worse than childbirth ha ha.  If this 3rrd GI doesnt hurry up I will search eleswhere soon and pay for a private scan ERCP only aftter researching, as you say, for specialists. II cannot live like this.  So my dear lovely lady, as much as I wish I could help, all I can say is YOU have been the first ever person, after I have googled and googled, to say how you get similar to me. I cannot believe it!! I will pray for you. You are too young to put up with it.  If they have damaged the "vagus nerve" I cannot see how it can be fixed.....but I will even consider a neurologist if I have to.  The brain and guts and sooo connecteed.  DO NOT give up.  I have fought them over a year now and for ages nothing showed. Bllods all OK.  Now trouble is they are all reassuring STILL and that is the hardest part to endure.  We know something is very wrong, but how do we prove it.  I also get very thirsty.  My kids have videod me crying so bad and been to GP and consultant apps with me.  I feel I am continually being put down and laughed at and discharged STILL in pain.  You must tell GP "it is unbearable" do something or  ask if you can try a morphine patch. ANYTHING.  I say as you do....I can only see and keep praying for a miracle but God to me is not listening,, or is he.  My daughter says I must elieve but as you know my dear noone can feel our pain and mine iis awful each day by evening.  DO let me know how you keep going and keep on and on and get someone to go with you to GP etcc.  They can do a "gut hormone test" a barium swallow through.  You do not deserve to put up with it and if we do have nerve damage then you must ask for pain relief. I cannot take any NSAIDS oral morphine as I then double up with gut pain and for some reason then cannot pass urine and end up on catheters.  I have kept a yearrs diary and I willNOT forget each and everything that has happened even if my kids bless and friends have and GP who is soo busy.  Anyone reading this forgive such a long story.  Also there are supplements you can get Oxbile worth a try.  They say when no gallbladder tho, bile continuously drips into small bowel and bile is needed for fat. I find fats and carbs the worst.  But even fruit is ridiculous.  !!  Bless you.  You are not alone.

Another thing Kate. I bloat out a lot.  On all grains, beans, etc.  Sweets!!  Even gluten free.  Bread makes me very constipated and eggs and I cut down on yogurts and milk.  Nothing helps really but my normal daughter of 41 bloats on bread etc and very constipated.  I hardly eat at the moment. I dread it.

Hi basted

Thanks for your replay. I am in pain right now. I was lying down the whole day. I was hungry and was not in the mood to warm up the soup so I ate it cold and the pain got worse.

I have pain under both sides of my rib cage. It's sensetive even with a light touch.

Do you that it could be pancreas or something'm else?

Sorry to misspell your name dear.

I woke up with pain again. The doesn't want to leave me it's a staburn pain. It's been four years now that I am suffering from it. It gets better by never goes away completely. I always feel the itch and pinch in my stomach. I never had a greesy stool but I've became severely constipated. I saw five diffrent GI specialists but none even mentioned pancreas. But I think I might be suffering from it beacuse what else could give me all these annoying pain. I truly believe that something went wrong during the galblader removal that Surgon made a mess. I am not the same person that I was before the surgery.

I am afraied that if it is pancreas then what will happen next. Will it I die soon? I can't stop worrying.

I definitely know the feeling. I had this type of pain and neausea in 2004. It went on for 10 months . Doctors couldn't find anything. The last hope was acupuncturist. She said it was something with the heart. So I went back to the cardiologist. I needed a triple bypass. Had it done and it solved the problem. But the surgeon did a really bad job. Have had damaged nerve and muscle damage fro that. Mainly inside the left rib. 6 years later I had to have the bypass redone. New surgeon said it was not done properly the first time. So , now I don't know if the rib pain I have is from the damaged nerves and muscle or fro the pancreas. The big difference , for me , is the upper middle abdomen pain that never goes away along with the neausea. Very scary sympton.

Same I have the same pain and confusion like yours. The pain is in upper side that never goes away. I don't know what I am suffering from. Just I hope it's not pancreas. Please let me know if doctors could tell you the reason.

Hello I cannot tell you if it is the pancreas. All I know is I feel so much like you since gallbladder removal this happened.  And, like you, although I DID have pancreatitis Xmas, my MRI scan was OK so noone would do anything else.  I have lived like you in unexplainable horrendous pain, on eating and passing stools.  I became severely constipated but if I have too much sugar and fats loose and like you I feel my bowels moving and abdomen burns, all in ribs, middle of my back, my chest, Horrendous by tevening.  Kate you do not say  if you have been back to GP??  Yes I agree, and my daughter, that, like you say, I believe they caused nerve damage or something at the gallbladder op, but I have gastritis too and slow bowel movement.  If you have seen 5 GIs then one of them should agree to actually look down inside with a special endoscoy ERCP to stomach pancreas. You MUST go back. I am having a 24 hour manometry test Friday after I asked for 2nd opinion. And have had to wait 4 months for this. So I Paid £210 to see 3rd GI consutant, who agreed to do a ct scan and discuss and also the specialy endocopy and on the NHS different hospital. But again now I have to wait another 3 weeks for scan then maybe to see him so will be end of October November and I have told them I have lived like this since April 2015 and it has made me overdose once and still suicidal. Are you in the UK?? There are medicines for nerves such as Pregabalin, Gabapentin, your GP MUST offer you something. Insist on getting an endoscopy. If you UK keep on.  My prayers are with you as it is awful. To have found you and other relies has made me feel not so alone. Thankyou

I will let you know if they find out. I am very scarred too and living with pain you do not know what is the cause of, is the worstever.  Please dont give up keeping on. If you are US I guess it is hard re insurance but some has to offer pain relief in the meantime.  I in UK have taken my case to the Health Parliament Ombudsman against the hospital who wouldnt do any more but my blooods kept coming back OK.

Hello  Oh please let me know your results. My goodness you put me to shame you have been through so much pain and to lose a son and now your wife after 40 years is bad enough. I lost my husband 20 years ago. I am now 67.  BUT half of my pain is also now my fault because, like you did eat unhealthy, I am still eating bad stuff i.e. doughnuts biscuits. BUT only because even grapes and bananas and water burns my guts.  MY daughter has speciically said mum NO cakes, biscuits, bread coffee. I dare not tell her cos they have made it worse and I do believe it is my pancreas but I said to my GP why does the pain spread and burn all up my back to chest and throat on passing stoolssince my gallbladder op April 15. She does not know.  I alsodo not understand why I try pain killrs and even oral morphine I had horrendous gut pain and ended up on catheters unable to pee and then on eating blood in urine and pain all in my back again yet blood tests still OK.  It is funny how you have bone marrow problems for as I said I had low platelets (blood not clotting) and thee are made too in the bone marrow and the spleen is involved but I ad a bone marrow biopsy and was told that is OK it is my immune sytem destroying them so put on steroids.  Pain still continued. It is tue that depressiin and negativity does not help but you know how it is and worse if as you say you have eatrn healthy.  But I feel for me the damage was done years ago being an alcoholic (stopped 20 years ago) but only stopped smoking 3 years ago.  Also as I suffered depressin, they put me on tonnes of medications for 14 years and I went up to 15 stone, but still ate badley. Then I reeduced them all as felt ill and had no support.  The drugs are acid. Food is acid as you know, i.e. grains, meat, fish etc. I was better a bit when my daughter bossed me.  I have just got so depressed not knowing what is causing what I have thought blow it if I am slowly dying in pain and noone knows why I am going to drink coffee and eat doughnuts and biscuits and fat.  Whyam I still abusing myself it is not helping but I have had enough .  I do feel this is my pancreas and am scarred but as you say, if it is my tun it is my tun.  I just want to know what I have been living with and want answers and like you I pray we will both get them soon and Kate and that they will be able to help us God willing. I have prayed and prayed so much, been angy, sobbed and sobbed, hated God if there is one, and ask, like you WHY? yet I say maybe I am being punished for my past bad past and maybe I am lucky to still be here and have had a goood reasonable life (not a happy one) and think of those who do not get as far as we have but it is soo hard isnt it when alone and in pain and suffering.  Now my bones are hurting too my leg shoulder and I know my diet has been too much sugar and bad fats as I have sores in my mouth.  My eyes go dry too. My skin and for my age, compared to other ladies, I am quite wrinkly.  I also have two moles spreading so am waiting for that appointment.  Like you everything seems to hapen all one after another.  Shame you do not live next door cos we could compare notes.  My friends do not want to hear it. They have their own problems.  But if I had diabetis I would know what I am living with.   I also had a "heart incidence" in April 16 but blood told that and went OK again.  I even asked the bowel man if my bowels are tuck to my bladder as I pee and it burns in thighs and arms.  I just get blanks.  Please let me know how you get on. I do not go anywhere much see anyone or even watch TV or read because of depressin caused by this pain. I do cut the grass and manage to take my dog out quick. I have also just had bursitis on my thigh and in agony unable to sit, lie get up etc and in bed.  I have had enough and do not sleep well but usually the pain goes not eating in the night. Itt even burns in my bladder yet I have had a 24 hour urine est all OK. I gave a stool sample 6 weeks ago and heard nothing. Wish me luck this Friday 30th Sept for my manametry and I pray for you too with yours and for Kate to do something and still seek help and not give up. As I write this it is Sunday 25th September 9.30 pm. My bowels, chest, back, throat neck bladde everything is "burning" so I have to go to bed. It also feels like I have a tight rope around my middle. My ears are ringing. I feel as though my whole body is on fire inside.  Goodnight for now

hello how did your scans go??????

I was told my doctor would call me. Have heard anything from him yet.. Finished the test last Wednesday.

How are you doing ?

Hello oh I hope they find something to help you from scans....not that I would wish bad news for you but if only something so as to know why nausea and pain etc and to fix it.  Me? Went to London with my son Thursday on train. It was late pm so as usual pain worse by pm and upset on train my poor son!! Put up in hotel and had 15 minute tube in throat to monitor while drinking water etc then one put in and I had to keep it with recorder for 24 hr and eat drink etc.  Had to press buttons for pains. I kept pressing them ha ha! Anyway, I had motility of oesophagus diagnosed last year, now she thinks it is severe and it is called achalasia. I developed a cough on eating drinking but I thought swallowed OK. Like you, I now have to wait as 3 consultants look and discuss as she said I had a lot going on elsewhere too, bowels etc.  I will take 3 to 4 weeks.  I have my CT scan for 18 October and follow up 3rd GI app 25th Pctober st a different hospital. This will be my 3rd GI and 3rd hospital!!.  He did say there could be a blood artery problem even in abdomen but my feeling is it is not.  I have just read article where lady suffered years in pain and it is to do with bile from liver causes bloating pain on eating.  I am still eating bad food on and off and did whilst in hotel as free but only tiny meals.  But I have eatrn doughnuts today and biscuis yesterday and my daughter would be soo angry as she has tried to help me and I must stop them as, like you did with heart , I feel unhealthy eating done a lot of damage over years.  But even a iece of chicken white fish burns. Everything hence I am bad and then eat crap cos soo down still.  My throat muscles if not working nor are my bowels now with laxatives.  The only one that works is a stimulant laxative stimulates muscles in bowels so strange both ends not working properly and all started 2014 with year plus of gallstones and pain and drugs which cause constipation anyway!!  Oh dear sorry if I sound a misery.  I do not see any friends anymore as they got fed up with me, so how can they be friends I ask. They knew I had tests, but I was rude to one so I dont blame her . Everyone has struggles in life...trouble is Portacrean, n one gives us an instruction manual for each stage lol.  So that is me. How is your pain??? Still feeling sick etc??  At least you have your sisyers near you.  It is getting dark here at night early now and cooler.  I had sold my house to move but had to cancel it as too ill.  I have 2 bed bungalow, two cats and one adopted Romanian dog who was tied up for 6 yearrs in a cage.  They are all lovely company.  Lett me know how you are

Hello Kate how arre you??

How are things?? Any help with GI or meds or tests re pain. Is it any better?

Well. Don't have neausea but still have some abdominal pain. I guess this is the price of living longer. I have a great appetite and eat a good meal 3 times a dat. But I'm still losing weight. Can't stop it. Also have some kind of blood disorder/bone marrow ?. Forget the name but my red blood cells are too big. Spleen is ok though and haven't found anything else abnormal. About to just throw my hands up with all this. I have 3 rental houses and two are gonna be vacant next week. I guess I don't really care too much about what happens next. Just tired of new things going wrong each month. Never ending story. You know I've eaten extremely healthy and exercised religiously for the past 13 years. Doesn't seem to have made much difference though. Have more health problems than people around me that haven't done anything healthy in their lives and they don't have any health issues. Well I got a bit long winded there. Sorry. Just agravated. Hope the best for you. Let me know how things work out you. I'll post my results on here.

Hi I know how you feel.  I have got like you....sort of give up now and losing interest in what will be will be as we cannot seem to do anything right can we.  To have eaten healthy so long and have heart, prostate, pain, bone marrow sucks. Especially as you say people more unhealthy food and seem OK. I watch people stuffing their faces and in some ways am envious cos I used to love my food. Now I can hardly eat as I said 6 grapes.  Anyway, enough of me I get carried away and write scripts ha ha. I was swimming and nordic walking in 2014 and helping people elderly housebound. Now I cannot even do that and that upses me as I liked helping.  You must own your houses then like people do here. They buy them and rent them. Over heeee is a lot of rental now as hardly any cheaper houses for sale anymore. Plenty of larger expensive ones but soo expensive nwo. Not many council houses being built either which people live in and rent. I have my own little bungalow as back in the 70s we had little money even then but managed to live with parents and save to buy with a mortgage.  At least you are eating well, but I hope they find the cause of weight loss soon and help. Were blood tests done for you and werre they OK?  Funny how you have some sort of bone marrow disorder and blood cells.  Mine, as I said, similar, but my marrow is making them but my body destroying  them..platelets which make blood clot. I am off steroids as platelets wete up and OK but blood test soon as she said they had dropped a bit!! Like you....I just wonder what is next and wat new ingredient will be added soon again to the pot!!  Everything seems to be packing up slowly and it could still be my pancreas.  Please do not apologise.  You carry on and I am hapy to listen and read. I am grateful for response as it cheers me up to have contact with people other than sit here in silence all evening as our TV is rubbish and I feel too poorly to watch and go to bed as pain so bad for peace. I now have to take sleeping tablets. I do not want to get up in the morning, although I still wake up all night drinking water.. Keep me posted. Chin up.