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Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Should I push for quicker tests

Postby Roni35 » Sun Nov 20, 2016 10:30 am

Hello, I posted on this forum some 6 months ago with similar symptoms as I have just now (although I had no bloating and they didn't seem as severe). I never had any testing done then and I have been completely fine up until now. At that time I was also diagnosed with acid reflux although I never had most of the symptoms for it, no heartburn etc, I was just wakening up in the morning with an extreme dry mouth and I had and occasional cracking/fizzle sound coming from my throat. I was prescribed 20g of Omeprazole for it. Just over a month or two now I started feeling a heaviness in my chest, like I had a chest infection, I spoke to the doctor and she recommended upping my dose of Omeprazole to 40g and see how I got on over a month. It seemed to be ok.

Fast forward to today, I have been feeling extremely bloated for almost three weeks now. I had sickness and diarrhoea on Halloween and my stomach was really upset with it but the next day I was back to eating again. Then about 3 or 4 days after it I experienced the bloating which has not gone away since. I sometimes feel a pressure feeling across the top of my abdomen and I have had a burning pain, a gnawing pain and it sometimes goes to my back. The pain in my stomach was above my naval and to the upper left. I sometimes feel an uncomfortable feeling under my left rib cage right under my breat, almost like a babies foot is in it (I'm not pregnant). I've had diarrhoea on and off and smelly stools. My diarrhoea is sometimes yellow and it's burny and quite watery. My food felt like it was sitting at the top of my stomach for a good while but doesn't feel as bad now. After going to the out of ours doctors since I've been experiencing these new symtoms I was prescribed ranitidine to go along with omeprazole, I saw my own GP a few days later who took me off the Ranitidine and prescribed me Lasaprasole, I had asked her to refer me for an endoscopy to investigate what was going on and she seemed unconcerned and stated she couldn't refer me as I don't tick any of the guidelines that warrant getting it investigated, after I insisted she said she would take a look at it for me but to wait two weeks to see how I get on with the tablets.When I came home I looked up my symptoms on the internet and once again found myself back on this website and forum, I then telephoned the helpline and spoke to a lovely gentleman who advised talking to my doctor again. I had a phone appointment with her and told her about my yellow diarrhoea (that hadn't happened until after I had last seen her) she said she'd refer me for an endoscopy but I would need to first give a stool sample and come in for blood tests. She also wanted me to have an H Pylori stool test but I have to wait two weeks to hand in that sample as I need to come off the Omeprazole to give it time to leave my system. The burning in my stomach has gone but the uncomfortable feeling in the middle, top like a pushing is still there, my stomach is making ALOT of noise and the the uncomfortable feeling under my left rib is still there, it was sometimes sore when I bent over other times not. I've had really bad gas and I am getting the fizzing sound in my throat again but this could be because I am only on 150mg of Ranitidine twice a day) I still feel hungry, I still want to eat. I've lost 9lbs since this started but I've not been eating much because it was uncomfortable not because I wasn't hungry and I'm overweight.ive had a few greasy stools and one that wouldn't flush yesterday, they float too.im 36, I don't smoke (I was a light smoker but stopped 7 years ago) and I don't drink. So should I push the doctor for faster tests and ask for a CT, I don't think she'll ever give me it. Thank you for any help in this

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Should I push for quicker tests

Postby Dandygal76 » Sun Nov 20, 2016 12:05 pm

Roni, I wouldn't panic just yet. Everything you have said reminds me of my partner who suffers with gastro problems. Have you looked at the FODMAP diet. It isn't a fad diet, it is a medical diet recommended by his dr, but can help you identify food intolerance. You will be really surprised what can actually cause these issues.. onion and garlic was painful to remove from his diet (but reintroduced). I would try a pure elimination diet (I hope you are not a fussy eater) and I think you may find some improvement.

I would push for tests at the same time (but that is just me). Scatter-gun approach until you get answers. x

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Sun Nov 20, 2016 2:10 pm

Hi Dandygal, thanks for your reply. I'll have a look at the FODMAP diet. I do have a bit of anxiety when it comes to cancer and trusting doctors, I never used to be bothered about my health or worry about it but I have lost two of my aunties, two of my uncles, my cousin and my own mum to cancer in recent years (none of them pancreatic cancer). So it does worry me quite a bit. Also, after I had my twins almost 6 years ago, they left me with a retained placenta, twice, I ended up needing emergency care, an operation and a blood transfusion, I almost died. These are the reasons that I am so apprehensive now. I think this hinders me now when I visit the doctors, she knows I am extremely anxious and feels she is wasting her time testing me, this was due to me finding a very suspicious looking mole about 6 months ago and I completely freaked out (this has been the only time I have ever freaked out like this - until now) turns out the mole was fine but I think she thinks I'm a hypochondriac. I'm due to get my blood taken on Tuesday and I'm waiting for my first stool test results (not the H Pylori) to come back mid week. If there is a problem would it show up in my bloods? Can anyone tell me what blood tests I need to check my pancreas? Thank you again

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Should I push for quicker tests

Postby Dandygal76 » Sun Nov 20, 2016 3:12 pm

You can try to ask for Ca19-9 counts but I am not sure this will help your anxiety. There are a minority that cannot produce the right enzyme and so, given your cancer anxiety, I am sure you may still be convinced that not only are you unlucky and minority to get PC but also that you are the minority to not have the right enzyme. Roni I cannot recall how old you are? Has the doctor suggested counselling to try and reconcile your fears with cancer. We all fear it.. bloody hell I noticed every little twinge when dad was diagnosed. However, i really would try the fodmap diet first and diarise what you have eaten and your symptoms. I think once you have done this for a month or so then you have something to take to the doctor and demand something more. I am not sure how forward thinking your doctor is either... fodmap is new but medically established I understand. I would though, in the first instance, try and address the anxiety issues first. I am not at all being dismissive of this... you have young children. One of my biggest regrets in life is that I didn't go on a week long course to Texas when I was 25. My son was 2 and there was a big scare about rocket launchers around Heathrow. It felt too much at the time (as my son did not have a dad either) and I didn't go on this all expenses paid trip but looking back I know it was daft. It is important to enjoy your children and your life now. Loads of people will get cancer and if you do then you need to deal with it then... anxiety can also be causing a lot of your symptoms... just food for thought. x
Last edited by Dandygal76 on Mon Nov 21, 2016 9:03 am, edited 2 times in total.

Veema
Posts: 479
Joined: Mon Feb 02, 2015 5:35 pm

Re: Should I push for quicker tests

Postby Veema » Sun Nov 20, 2016 5:38 pm

Who cares who thinks you are a hyperchondriac? If you feel you need further tests then push for them. My husband didn't have any pain at all throughout the whole ordeal...he just had yellow smelly poo and that was enough for our GP to refer him for an ultrasound. The main thing about pancreatic cancer us it's ability to mask itself as other symptoms...I have no idea if the symptoms you have are PC or something else, and I dont want to worry you, its probably not, but I do know that many doctors don't know either.

Don't give up...get those tests.

Vx

Marmalade

Re: Should I push for quicker tests

Postby Marmalade » Tue Nov 22, 2016 6:50 pm

Hi Roni,

I am sorry you are having such an anxious time. It's hard to shake off the anxiety once it sets in even when we know it can actually cause us to feel more ill. The issue with testing for everything is that the results are unlikely to stop you feeling axious and may actually make you more anxious as you wait for and try to understand the results. The testing is as likely to feed our anxieties as cure them.

I am sorry if this is not what you want to hear and I understand, I really do. I think you should concentrate on your digestive issues, and what is causing them. Handing out pills that just suppress the symptoms is lazy unless the GP has also explained what is happening and why, and what can be done about it so yes, you do need a proper diagnosis and you should ask to see a specialist for a second opinion if you are not happy that the problem has been correctly identified. Good advice from DG to take a good look at diet and perhaps you could also try some yoga or other self help for the anxiety if you don't already. I found Tai Chi a great help with my anxiety but everyone is different.

Best wishes, Marmalade xx

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Thu Nov 24, 2016 9:33 am

Thank you for all your replies. I'm 36 Dandygal. You are all right, anxiety can cause our bodies to do some weird things. The burning and gnawing pains have gone but I'm still bloated and getting some sharp pains by my ribs now and then. I have been eating very bland food and will keep doing so for now. I hopefully will get my stool sample results today and I am praying that something shows up in there that can explain how I've been feeling. I had some blood test results, it was just my liver and pancreas function and blood sugars and they were all normal, although I know none of these are actually any good at diagnoses. I'll see what results I get from the stool test and then take it from there, your right Veema we should push when we feel we need to. I was not happy that my acid reflux was just explained away with a prescription.

I'll have a look at some yoga, thanks Marmalade.

Thank you again for taking time out of your day to reply to me, really appreciate it.

Genevive
Posts: 6
Joined: Thu Jun 16, 2016 2:01 pm

Re: Should I push for quicker tests

Postby Genevive » Thu Nov 24, 2016 11:08 am

Hi Roni

I'm not a medical person but I've learnt a great deal during the last 13 months of pancreatic cancer.
The chances of PC at your age are v slim.
However it can happen as it did to me aged 42.
The CT scanner is a v effective way of looking for possible PC.
Sadly often it isn't picked up on ultrasound.
GP's are unable to do a direct referral for CT.
They refer to a specialist to do tests to rule other things out first if you get referred as often this takes time.
If you have private medical you could ask your GP to refer
or self refer.
Otherwise if you are worried push, push and push some more.
I wish you all the very best .

Love Genevive xx

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Sat Nov 26, 2016 9:14 am

Hello Genvive, I'm really sorry to hear you are going through this and I hope you are well. Thank you for taking the time to reply, yes, everything seems to take so long. My stool samples are still not back, although the doctors surgery are implementing a new system at the moment and I suspect this is the real cause behind the delays which I am finding completely frustrating! Unfortunately I don't have private healthcare so I'm stuck with the slow wheels of the NHS. I'm going to push and push on Monday as anytime I eat any kind of fat I have a terrible stool and I know that this is not a good sign.

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Mon Nov 28, 2016 4:24 pm

Well after much chasing at the doctors surgery I've finally got my results from my stool sample and it was completely clear and my bloods are normal too. It sounds ridiculous but I'm really upset that the stool sample is clear as I was hoping there would be something simple to explain why I have had these symptoms. I'm really worried now. I'm supposed to wait until Thursday to hand in a stool sample to be tested for H Pylori but I just think it's a waste of time, as far as I can read H Pylori doesn't cause bulky greasy stools. I'm going to phone the DR's again in the morning and get an emergency appointment.

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Fri Dec 02, 2016 7:30 am

I saw my doctor yesterday, she is now going to test me for coeliacs and is sending me for an ultrasound which will probably take around 12 weeks. I wish I had the money for a private CT scan, I can't take much more of this. I've had some new symptoms and I don't know if they are connected to my stomach trouble but the glands at the back of my head/neck and ear have swollen on the left side and are very sore and I don't have a cold or sore throat etc to explain why they would be swollen. I'm feeling so frustrated with the lack of urgency in all of this.

Marmalade

Re: Should I push for quicker tests

Postby Marmalade » Fri Dec 02, 2016 10:47 pm

Hi Roni,

Sorry you are still feeling unwell. I have to say that your symptoms sound more like a digestive issue than anything else and testing for coeliacs and colitis seems a reasonable thing to do. People are all different and there is not always a clear set of indicators so medics test for the most serious things first. The fact that your results are back without significant abnormalities is more likely to mean that although uncomfortable, and digestive disturbances are causing you to lose weight, there are no red lights going on so far.

If you don't have confidence in your GP then change to another one or ask for a second opinion. This is your right and no one will get upset. I think you should seek a second opinion as you clearly don't want to accept your current GPs opinion and investigation plan and are making yourself more anxious by researching more serious possibilities. That you are ill and uncomfortable and anxious is a fact but whether or not your illness is life threatening is what you want to know. Your GP obviously doesn't think so or you would have had an urgent referral but of course no one is infallible. You can take this as something positive and wait, or ask for a second opinion or change doctors.

You could try a gluten free diet while you wait. It may not be the answer but it won't do you any harm and may make you feel more comfortable, just a thought...

I hope you get some answers soon, Marmalade xx

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: Should I push for quicker tests

Postby BlacJAC » Sat Dec 03, 2016 6:55 pm

Hi Roni,

This sounds very similar to what I have been experiencing over the last year or two, including the swollen glands. Bloods, stools, scans fine and so on. I don't mean to step on anyone's toes here, but the worst thing you can do is give up gluten before you've been tested for coeliacs. Believe it or not you could potentially put back any future testing by weeks by giving up gluten. If i recall correctly, you need to be on a high gluten diet for 5 weeks(someone feel free to correct me)for any test to be reliable. What happens is gluten causes inflammation and when you cease gluten, that inflammation can disappear so there's a high chance that your biopsy could come back negative even if it did turn out you had coeliacs.

As for other causes other than PC and the list of things I was given during my diagnostic journey that can cause the symptoms you're having were:
IBS
IBD (UC,Crohns etc)
Over active thyroid
Liver problems
Low gallbladder function
Food allergies (you'd know about that one I assume)
Food Intolerances (Dairy, gluten, eggs, fish etc)
Chronic Pancreatitis
Bacterial overgrowth in the small gut
fast gut transit (you'd know this was the case as it usually happens after you've had surgery on the small bowel)
Family history of poor absorption from certain foods
And a host of other stuff

All my tests surrounding my pancreas came back negative. That chest pain could be down to anxiety. I had chest pain/discomfort and when i lost my anxiety, my chest went back to normal.

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Sun Jan 15, 2017 6:39 pm

Hi everyone, I'm just coming back to update my post incase anyone else finds themselves in my situation.

Thank you Marmalade and BlacJac. I was tested for various infections which came back negative and my Coeliacs test was also negative. I had my ultrasound appointment today, I was surprised to find that they do them as an appointment on a Sunday! Anyway, the sonographer said she could see my pancreas clearly and that it was fine, nothing there. I know this is not 100% but it is enough for me just now. She did say that I had a fatty liver though. I'm still having symptoms accompanied with some pain under both ribs now, sharp, almost stinging pains, that last briefly and disappear just as quick. So I guess I'm no further forward on an answer to what is wrong with me but I'm no longer panicking as much as I was.

I'd just like to thank everyone who took their time out to give me advice and to the nurses also, you all helped to give me some comfort and plenty of ideas on what steps I could take. I've read a lot of your stories and I really do appreciate your time after what you have all been through or are going through. I wish you all the best for the future and I am keeping you all in my thoughts. Best wishes.

Roni xx

Roni35
Posts: 10
Joined: Tue May 03, 2016 2:20 pm

Re: Should I push for quicker tests

Postby Roni35 » Sun Jan 15, 2017 6:45 pm

Just as a side note when I had my bloods tested the last time my Alkaline phosphate was low, the doctor never mentioned this to me though. I only found out because the nurse mentioned it while getting my coeliacs test done.