Help - suspected pancreas issues
Posted , 9 users are following.
Hi I'm just looking to see if anybody can share their experience and give some advice.
I had a baby 7 months ago, during my pregnancy I had terrible heartburn which I think is quite common. I did not put on much extra weight, I had back pain mostly on left side but it would spread all over but overall I felt well.
Baby came and then things went downhill, the heartburn and reflux stayed but to a lesser degree, but i can often regurgitate my food
The left sided back pain turned from a niggle to a constant bad ache and feels much worse after I eat. it also now creeps around my side and front under left ribs but is mostly my back.
My tongue feels swollen and this sounds stupid almost feels too big for my mouth.
I have lost 2 stone (as i say not much baby weight so this is tracking from my pre pregnancy to now), my appetite is reduced but I force myself to eat to try keep my strength up.
Then about 2 months the scary thing happened and my stools became really greasy/oily but they are still brown. there is often a layer of oil, fat bubbles when i poo. My movements are erratic with some constipation and then some diarreah.
More recently I often feel light headed, with buzzing in my head and tingling hands and feet. I am worried that i have malabsorption with my oily poo, my weight loss and I'm concerned how long this can go on for.
After much debate with my gp (she thought I had baby anxiety) I have had bloods they were fine but I don't think they checked my lipase and amlayse levels. I was referred to gastro consultant who is only doing zoom but he arranged abdominal CT scan with contrast which he said was clear. He was then going to discharge me but i pushed and said but what about my symptoms and he had now arranged an endoscopy for early November. I have also emailed him asking for further bloods and poo tests, surely they need to check the elastase.
I am usually super fit and out exercising, hiking etc but now I am generally fatigued. I know there is something wrong with me and i'm convinced its my pancreas given all of my pain and symptoms but the gastro consultant said it looked ok on the CT scan. I just feel like nobody believes me and that each day i get a bit weaker, i know that sounds dramatic but that's how I feel.
Do these symptoms sound familiar, what about the tongue, i've not read about this being common, also how did you get anybody to listen to you.
0 likes, 23 replies
ashley64992 andrea64883
Posted
Hi! how did your endoscopy go?
andrea64883 ashley64992
Posted
Hi it was just standard endoscopy, they found a hernia which may have caused bit if sickness but bone of the other stuff and no evidence for ceoliac
How you doing .
lindsay87321 andrea64883
Posted
Are you feeling any better? I am going through similar symptoms (for several months now) and have been having all the tests done which keep coming back normal. I've had blood work, ct scans, ultrasound of abdomen, MRCP and CCK Hida Scan (to check my gallbladder). Have they advised you to complete any additional tests? I am hoping to get an endoscopic ultrasound done in a few weeks which I think would for sure rule out anything relating to my pancreas. (I am 33 F and have been in good health my whole life so this has been a bit scary / frustrating trying to figure it out.)
ken70028 andrea64883
Posted
Have they done a fecal fat test?
If you have a lot of undigested fat in your poop - you might have exocrine pancreatic insufficiency, or EPI.
I had your same problems. And I had extreme weight loss - I unintentionally lost 30 lbs in half a year.
At first they thought it might be cancer, but all my scans, endoscopy, colonoscopy, abdominal CTs, Blood work, were relatively normal. And my poop had no signs of parasites, or C-diff.
Finally my GI Doc ordered a fecal fat test. Sure enough it had plenty of undigested fat. From there he diagnosed me with EPI. Since then I take Pancreatic Enzyme Replacement Therapy, or PERT. I was prescribed Zenpep and now take two caps with every meal and one with a snack.. But, overtime I learned what foods might require an extra cap, usually very high fat content foods (think Ice cream).
Having too much undigested fat in your stool causes it to be fluffy, floaty, sticky, and it has a terrible foul odor. And I mean foul - it really smells like someone died and was rapidly decomposing. And sticky, did I mention that fact? So sticky copious amounts of toilet paper were needed. Note: I finally bought a combination bidet/toilet to clean my butt (and its wonderful to feel (and be) spotlessly clean after a BM.
My only advice is not to worry until you get your diagnosis. We humans tend to speculate and think the worst when there's really no need to worry unless you have a clinical diagnosis that's concerning. .
Good luck, and please keep us updated.
andrea64883
Posted
quick update I have had mri, had bad reaction to it but got results and all clear. Did an elastase tests and showed as normal but my stools are a mess. got to see specialist last week he wants to do colonoscopy, capsule endoscopy and another elastase stool test. he us reluctant to do eus or mrcp at this stage as both CT and MRI were normal. um in pain every day and feeling sick but just bot getting anywhere.
alexis20017 andrea64883
Posted
Hey Andrea! just came here to check how you were doing it's been a while, thanks for giving an update. while it's great that you have another clear scan and normal tests i know how frustrating it is when you are still left in pain every day and feeing sick with no explanation. i am in the same boat... so tempted to just let it go and take my chances but then im like no this is your health fight for it but at same time i don't know what else to do. i'll be thinking of you pls continue to update as you get more tests:) yet another person on here with continuous symptoms and no explanation crazyyy
andrea64883 alexis20017
Posted
Alexis its so frustrating, i'm going crazy. i question everyday if my symptoms are teal but they are and the weight loss is visible so at least my family see that.
im still 100% convinced its my pancreas even though i pray it isn't but nothing is showing. oh well more tests that i dont think will show anything but will rule sruff out. i really feel i need an eus.
how are you? are they still saying its ibs. hope you are ok
alexis20017 andrea64883
Posted
im ok... i still have back pains and i get this quick stabbing pain below my left rib and have discomfort all the time. Still saying its a functional issue yeah... what are your symptoms lately? the same with the back and upper left stomach pain/messed up stools? anything new or worse?
MD15032 andrea64883
Posted
Andrea, and so - do you have your result yet? Has anything changed?
I have exactly the same symptoms - scared AF.
Are you in the UK?
andrea64883 MD15032
Posted
i am still having all of the symptoms but every test so far is clear. so frustrated and feel like im going crazy
andrea64883
Posted
Alexis our symptoms are so similar. I have constant pain on left side of my body, its mostly my back but under left ribs too. this has also moved across to my right side. the pain gets worse when i eat.
The other symptoms are still there including my weird tongue. i feel sick most days but don't throw up. i hate eating as i know it will hurt.
alexis20017 andrea64883
Posted
Sooo sorry... you are not alone in this. Thinking of you and hoping you get a diagnosis and treatment soon.
resi78 alexis20017
Posted
After searching the internet for similair symptoms I found this post. I had my 3rd baby 18 months ago. I remember having some upper back pain and discomfort under my rib cage but it wouldn't last long and would go away if I switched positions and stretched some. assumed it was everything pushed up and the extra weight. Soon after having her I had upper left back pain on and off. I thought it was me holding her in my left arm. Pain seems to flair up and stick around for a few weeks and then mostly go away for a month or more. This past summer I started having some under left side of ribs discomfort. June, November, and now January. It's all bearable but concerning. This time around seems to be the worst. I might have a hour of really tight feeling pain in my mid back and then the rib area. Then it gets better after a hour or two. Discomfort can co.e and go through out the day. Backpain can move around my upper left back. I've gone to my primary doctor about it 2 times and just had a phone appointment with a nurse practioner. Doctor thinks it is tension knots in my back and doesn't seem concerned about rib discomfort. I had blood work done in November and all was normal. I asked about a CT scan and was told it wasn't needed. I got a chef xray instead and will find out results this week. more blood work to be done this Tuesday too. I've also had floating stool but not always. I've had that in the past years on and off. I've got myself convinced it's pancreas cancer. I'll add the left sided rib pain started the day before my menstruation this time around and the upper back pain followed several days later. It's been 2 weeks since this flare started.
Alexis or Andrea, Have you gotten anymore answers? Both of your symptoms sound about the same as mine.
alexis20017 resi78
Posted
hi resi so sorry to hear youre going through something similar... after getting no where for months, i did the ortho route and have been doing PT for my back and ribs.. seems to be helping with the tension im feeling. i have lots of short, tight muscles running along my spine on both sides (left is worse)... i still have some gastro issues tho like excess gas and softer stools than usual but ive run out of options to test so just been doing my exercises and even got a foam roller with nobs to help with the back knots... seems to help. andrea might have more for you. i hope you find answers and relief soon! xx
andrea64883 alexis20017
Edited
resi sorry t gear you are going through this, please try not to get fixated in pancreatic cancer, i did this and it ruined my life fir several months i actually made myself more ill. easier said than done i know
i have had a number if tests including several bloods, endoscopy, CT and mri/mrcp with nothing showing. i still have symptoms and i am convinced that my pregnancy may have triggered gall bladder issues (which is common) and potentially a tiny stone or sludge have got into my pancreas.however nothing shows on my scans. i am now having a colonoscopy and capsule endoscopy to see if there are other issues.
i hope you get answers as living with undiagnosed pain and sickness is awful
alexis20017
Posted
@andrea64883, yes totally agree with you about the PC fixation. i was soo worried about that too at the start and it 100% made my symptoms appear much worse than they were. while i still have symptoms too, now that the fear of that has significantly calmed down, i do feel much better now. worrying so much amplifies any symptoms you do have and even made me imagine ones that we not there. but yes so much easier said then done!!