What now?!

Digestive health
1

Hi all, I haven't posted on here in a while as I was convinced by my symptoms that there was something wrong with my pancreas. My GP was also in agreement that my symptoms sounded like it but all my tests were normal.

I saw my consultant who advised they would do more tests as long as when they came back normal I was to draw a line under it and move on.

My ultrasound was normal but showed debris in my gallbladder. Endoscopic ultrasound showed everything as normal (pancreas, bile ducts and gallbladder).

I am still waiting for my HIDA and SeChat scan which are in September.

I am lost to what is wrong with me now. Could I still have something wrong with my pancreas but it not show on scans? I thought EUS was the best diagnostic for early chronic pancreatitis.

Could it really be IBS? The pain is so disabling! Right after eating on my left side on my ribs and side and goes up into my back and shoulders.

The Amtriptiline seems to be working? Or it could be a coincidence that I started grape seed extract and turmeric at the same time.

I have been tested for IBD, celiac, gastritis. Normal endoscopy and sigmoidoscopy. Bloods are all normal. (Did have vitamin D deficiency and calcium deficiency).

I bloat after eating, I have lost weight and struggled to put it back on which I have slowly managed to do. My stools are loose, diarrohea, yellow, orange and light brown in colour. I suffer with bone aches and pains, intigestion, acid reflux, heart palpitations, fast heart rate, sore throat, mouth ulcers and throat ulcers, any food with any fat in it causes me huge problems. I have undigested food in my stool.

Any help with any of this would be great!

Thanks in advance!

2

I had a spell of diarhoeea for 3 months and was told it was IBS  I have started drinking green tea and I just read that lemon juice is also good so I will be giving that a try I am waiting for a colonscopy but after reading the horror stories on here not sure if I can go through with it.  I am treading carefully on what I eat now bread is definitley out so not eating gluten.

3

Ooph you sound like you're having a rough time with your ibs!  I feel for you as my ibs never leaves me in that much discomfort, find out what this is, it's feasible if you're female that there is something gyneacological that is causing these problems, tip of shoulder right pain is often signs of miscarriage.  Insist your doctor checks all this out there is something amiss you're not been told as is typical with ibs patients - don't tell the patient until the last minute!

4

Hi

I have been suffering for 18 months, I live on sandwiches, as other food make me I'll, I seen a dietitian at the hospital she said eat 3 meals a day, no idea what I am going through, so what I need is a nutritionist , that can advise me and understand my symptoms, I see my gastro again in October so hopefully he can help, had many many tests, like you I am suffering from many mouth ulcers, pian discomfort in ribs bloating , the list goes on.

My mouth ulcers seem To go and are back again.

I can not remember when I was ulcer free.

Hope you can get help soon

Junie

5

All sounds so familiar gem ,

Are you under a consultant gastrologist at the moment ? Did he diagnose IBS ?

I'm awaiting next steps , I'm putting my faith in him as he is the expert ! Not me and that's all I can do .

Was diagnosed several years ago by him for IBS , but recently iv got more concerned various new symptoms so went back for reassurance , for me health anxiety and stress playing a huge part in all my symptoms .

Hope we both get answers soon

6

Hi junieju, that sounds right some days able to eat and some days not.  You can't just live off sandwiches - that's not good, it could be that the bread is causing all your problems!  Go back to your doctors and insist they do something for the mouth ulcers but equally they check everything out as to why you can't eat!  Do that first then we'll try to help you on here!

7

By the sounds of the ulcers you are deficent in some vitamins. The acid reflux will also make that worse. Has your Dr tried you on some antacids.

2nd has it been looked into to see if you have something like cfs (chronic fatigue syndrome) or Fibromyalgia. Ibs is often a symptom of them but you will suffer from other pains as well.

Ibs can be hormonal. I have the depo contraceptive injection and it really helps to keep your hormones level.

Symprove is fantastic for putting good bacteria into your stomach. It also seems to ease it. I never had one attack whilst I was on it.

I hope you get help.

8

Hi Gem,

we have already had net discusiion in the past....

I am 95% the same symptoms as you are.

I will go for EUS in 2 months so let you know than. Until that my doc syas its not chronic pancreatitis.... good luck!

 

9

Hi Sam

I have been to see a mouth specialist, they are apthous mouth ulcers, it may be something to do with the gut, but I have to wait and see my gastro consultant in October to see what my tests reveal , I know my eating sandwiches is bad, but they are the only things that don't give me a lot of trouble.

I really need a nutritionist to guide me through.

Thanks for your reply

Junie

10

Your symptoms sound like IBS.  I was diagnosed in May with IBS after 3 and a half months.  I saw eight doctors and was visiting my surgery weekly begging for answers,  One out of eight understood my symptoms.  As each test came back negative, the more I panicked.  I too worried about my pancreas but the doctor thankfully ruled this out.  

Everyone experiences IBS differently.  I have stomach pains mainly with constipation and that's all.  I have no trouble with food.  Initially, I had four different types of pain:  dull to deep grinding, sharp to stabbing and neuralgic, sore to touch pain.  The pain radiated to both sides of my back, I felt sick, had sore joints and aching ribs.  I also had loose, soft stools.

Now, I only have dull pain with occasional twitching sensations inside.  I can largely ignore the discomfort and have reduced my anti spasmodics.  Buscopan works really well for me.

11

I'm in same boat and have commented on your posts before. I'm glad your EUS was clear that's only test I haven't had! I also think mine is pancreas as I've said before. Amitriptyline is helping me more than any other ibs meds have. Still get pain especially day after alcohol but much better on this med. I think if we had chronic pancreatitis it wouldn't help. That's what I'm hoping too!

I'm the same after every test I promise myself I will let the pancreas worries go and I do for a few days then I start googling and see how hard it is to detect and I freak out again! Such a waste of our lives living in pain and worry!

12

While waiting for a diagnosis, I googled myself into a panic and imagined all sorts of terrifying scenarios.

13

I'm glad the amititrpyline is working for you smile

Yeah I'm back to worrying. Trying not to thou which is hard. The way I'm looking at it is that if I eat healthy and avoid everything bad then hopefully my pancreas will be ok. I'm also gonna find some good enzymes to try and help my pancreas.

I hope we manage to get sorted one day!

14

Good luck with your EUS! It wasn't bad at all. I hope everything is clear for you!

15

Hi Christine. I didn't find my sigmoidoscopy too bad. It did hurt (no sedation) but I'm stuck together a bit coz of my adhesions and endometriosis. I do drink green tea and lemon and ginger in water. My dr told me to stay away from green tea?

I hope you manage to get sorted soon!

16

Hi Sam,

Thank you for your reply. I don't think my pain could be pregnancy/miscaraigrelated. My hubby has had the snip after our 3rd baby. I guess it could be related to my endometriosis but I've had scans and they've said it is all ok.

Im convinced something is definitely wrong with my right side under ribs but all tests are normal sad so I'm stuck!

17

Thank you for your reply junie.

Sorry you are suffering too sad it's not very nice!

I hope you manage to get sorted soon!

18

Hi Lady,

Sorry you are going through it all aswell. Yes I'm under a consultant gastro at my local hospital. Had all the tests to exclude anything bad so now they are sticking to IBS. I can't push for anymore tests as I've had them all.

I still haven't heard of IBS causing pain in the back and shoulders? Nor has my GP. This is something I will discuss further with my consultant at my next visit.

I hope you manage to get sorted soon.

19

Hi Susan.

I have been tested for all my vitamins and they are all normal. I've also tried symprove but didn't find much benefit from it and I tried it for a few weeks.

The pain management consultant did say he thought I had widespread chronic pain syndrome (fibromyalgia) but as I was on his drug of choice he couldn't help me further. I have also been on gaviscon, ranitidine and tried omperazole but I didn't have any relief from the pain. It did help the reflux thou.

I just hope it's IBS and nothing else being in diagnosed.

20

Hi Philippa,

I'm glad someone has the same kind of symptoms as me and has had their pancreas ruled out as a problem too.

But I'm happy that your also suffering sad

I have tried buscopan aswell but seen no benefit from it, I've also mebeverine but it just made me really bloated and gave me trapped wind so I stopped taking it.

I'm hoping at my next gastro visit to discuss my pain option.

I hope someone somewhere can come up with something soon!