Page 1 of 4

My convoluted diagnostic thread

Posted: Fri Oct 30, 2015 1:53 pm
by BlacJAC
As things currently stand, I haven't been diagnosed with anything and I'm hoping this doesn't come across as me being a hypochondriac, especially when there are many people on here either battling this dreadful disease or have a family or friend fighting the disease.

Ok, where to start... I'm 41 and a smoker. Haven't touched any alcohol for 8 years.

For the last two years I have been taking codeine twice a-day (60/500mg)for a disc problem which was diagnosed via an MRI around that same time. That's my outstanding medical history up to this point.

For the last year I have suffered from bad constipation, doing little, then suddenly having a complete clear-out from time to time. Up until two weeks ago when I saw what i saw in the loo I rarely drank water (bad when on codeine, now I'm drinking my weight in water and been put on laxatives which has now helped and up until 2 weeks ago my diet was bad - zero fibre, all high fat foods.

For the last few months I have had pale (golden yellow)steatorrhea (without oil slick) and last Wednesday after passing a massive solid brown poo, another solid poo emerged which started off brown, but had pale balls the size of malteesers attached to it, then some looser floating stools which where pale but had some brown mixed through it. For the last 2 weeks I have been tender under my right lower ribs, only when I'm standing up and I'm pressing under my ribs.

Needless to say, I rushed to the GP and she said it was caused by chronic constipation, zero fibre. My liver is non tender, not enlarged and my upper tummy area isn't tender and have no left sided pain whatsoever. I don't feel bloated after meals, I don't get any pains after fatty eating meals, but I obviously have some sort of fat malabsorbition issue to get steatorrhea. The GP advised me to completely change my diet (which i have - next to no fatty foods) and the stetorrhea has gone and my stools whist not hard have began to return to a darker shade of tan. Softer because of the laxitives that I've now to take daily.

Last weekend I went up to the ER with horrific right sided pain just under the ribs and the doctor there took bloods and did an abdominal examination. He said the pain was being caused by constipation and to take more laxatives. My bloods, including liver panels came back well within range.

I then got seen by a GI doctor who said it was a all a combination of a horrific diet, dehydration and codeine. Basically said, if you eat rubbish, then expect to see some horrors coming out the other side from time to time. He also saud, if one part of your GI system becomes bunged up, it will have a knock on effect. Does that even go any sort of way to explain the very pale malteeser type balls?

Whilst the pain has subsided a lot, I still have the same tenderness under my right ribs when standing. I've lost weight, but that's because I'm frightened to eat and have eaten next to nothing. I have convinced myself i have some sort of pancreas issue, but no one seems to be taking this seriously.

People can fret over something which they think is a lump or think their headache is a brain tumor, but I seen what i seen and feel it's all just being brushed off as bad diet and poor dehydration.

I'm really worried that the stetorrhea is merely being masked by me omitting almost all fat from my diet. 2 GPs, one A&E doctor and a GI specialist don't think these symptoms warrant further investigation i.e. US/CT/MRI.

For the last few years, sometimes after eating say a chinese meals, it has gone right through me within 30mins. Again, no pain or discomfort when that happens. I just feel it rushing through my small bowels.

Edit: Urine is completely crystal clear.

Re: Please help me, scared witless

Posted: Fri Oct 30, 2015 3:10 pm
by Minstrel1
Hi Blacjac,
First of all I would try not to worry. It sounds like you are doing the right thing by modifying your diet and are getting a positive result (more normal stools) from this. Changing your diet will not only give your digestive system a rest but will be good for your general health. A side effect of codeine is that it can make you constipated so this may have been adding to your problems in this area. If you are not satisfied with the answers you have received from the doc's you have seen I would suggest that you keep a log (date, time, duration) of your symptoms such as the abnormal bowel movements and pain (location, type, duration). So u have something to discuss with ur GP and will demonstrate your level of concern and may lead ur GP to request a ultrasound if u r still worried. Whilst monitoring ur symptoms closely I would not automatically jump to the conclusion that it is the pancreas causing ur problems. Worry can exacerbate conditions such as IBS, and high fat diets can cause things such as gallstones to name just a few. My story is on the thread 'newbie diagnosis roller coaster' and I was one of the lucky ones to have a benign tumour removed. After having surgery many of the symptoms I was experiencing such as pain under ribs back pain and frequent loose bowel movements still remain. This indicates to me that the tumour was not causing my bowel to be irritated!
I know it is not easy to stop worrying. Take care Lisa

Re: Please help me, scared witless

Posted: Fri Oct 30, 2015 4:45 pm
by BlacJAC
Thank you so much for your reply. It's very much appreciated. Not a slight on you, but I think i'll refrain from reading other posts because if i'm honest, about 99% of my anxiety over this has come from reading everything pancreas on the net. I've diagnosed myself and i think that's why the docs are brushing me off.

Something the GI did say was if there was enough of an issue with my poo, I would have probably been showing some signs of it in my urine too.

Just so stressed and my heart will probably get me before my pancreas if i keep going on like this.

Re: Please help me, scared witless

Posted: Fri Oct 30, 2015 5:15 pm
by Minstrel1
I've not heard that one before. I have had rectal bleeding off and on since January. Due to this I had a colonoscopy which came back clear. My GI doctor never mentioned that problems with poo may cause problems with urine. If you continue to be concerned keep going back to your GP until they take your worries seriously. A lot of people have experienced feeling brushed off by their GP so you are not alone in this. If having further non invasive tests such as ultrasound puts ur mind at ease then it would be worth doing just for that. I can understand u not wanting to read the stories of others but some do have positive outcomes even if the journey getting there is a bit bumpy along the way. I suppose what I am trying to say is most people who experience symptoms that u r getting do not have a problem with the pancreas, and not all problems with the pancreas mean cancer. Good luck Lisa

Re: Please help me, scared witless

Posted: Fri Oct 30, 2015 5:27 pm
by janem
Just wanted to comment and try to put your mind at ease a bit. My father lost his battle with PC 20 months ago and his symptoms were nothing like you describe it was mainly weight loss, bad indigestion and a pain that went through to his back.
Also my daughter had her gall bladder removed last month after several bouts of gall stones and although it was tender under her right rib the pain went in a band right around to her back and was so severe that she struggled to breathe and was in tears with the pain (this is someone that uses just gas and air in labour).

I hope that in some way this has reassured you slightly.
I hope you get the pain under control and get a diagnosis soon.


Re: Please help me, scared witless

Posted: Mon Nov 02, 2015 5:46 pm
by BlacJAC
Just an update. Even though I have changed my diet to virtually non fat, the steatorrhea still comes and goes. Not as bad as it was. Spoke to my gp by phone today and she thinks the issue may actually be something like Celiac disease and is going to arrange bloods. Still not getting referred for any sort of scan. because i have no pain over or around my stomach after eating.

However, for those bloods to work I need to go back onto a high gluten diet for 6 weeks!!!

The 2 times the steatorrhea has appeared and the lower stomach pains appeared was hours after eating wholemeal bread and low and behold, the next day I had steatorrhea and foul gas. Not all the poo floated, just some, but it was mushy.

I've had alopecia (can be one of the symptoms) for around 15 years and around that time my skin became very spotty (not blisters, just bad looking skin - a very bad case of all over Keratosis pilaris).

I'm at my wits end and the anxiety over all this is doing my head in. A lot of Celiac disease tests come back false and I get the feeling if my test comes back false, then it will all get dropped. I still think it's my pancreas, but she said the issue could be in my small gut and can cause the exact same problems as a problematic pancreas or gallblader.

I stay in the UK, so no alternative but to go through the NHS. I feel that the doctors feel this is all in my head. You can't simply make up pale stools and steatorrhea. The stools are no longer yellowish pale, just tan, though, so there's that.

Re: Please help me, scared witless

Posted: Tue Nov 03, 2015 7:16 am
by Sueoliver
Hi I can understand that you are worried! My Mum's symptoms were not like you describe when she was diagnosed with PC. Have you thought about having a private scan? That is what my Mum did and they saw something on her pancreas! I know how expensive they are but it might put your mind at rest.
Take care,

Re: Please help me, scared witless

Posted: Tue Nov 03, 2015 11:02 am
by Minstrel1
Hi, I am sorry u r having such a rotten time of it. This may seem a daft question but have u actually asked ur GP to send u for a scan? Does the GP know how worried u r and how this is impacting on ur daily functioning? As I said previously the scan might be worth doing if only to put ur mind at ease (from GP perspective).
When the surgeon was trying to assess my tumour (benign) and I told him my symptoms (very similar to your own) he did not think they were likely to be related to the tumour. For ur GP to rationalise that just because u do not get pain after eating u do not need a scan is wrong as not everyone gets the same symptoms. I agree with sue that a private scan may be a possibility if u are still not getting any joy from ur GP. Depending on the size of ur gp practice is it worth seeing a different GP?
Good luck Lisa

Re: Please help me, scared witless

Posted: Tue Nov 03, 2015 4:44 pm
by BlacJAC
Hi, thanks for the responses. Yeah I've asked. I've asked 3 doctors, but none seem to think any of my symptoms warrant a scan.

I have to admit, I'm now kinda feeling suicidal over all this and my partner is going to the doctors with me on Thursday. I was given anti depressants last week to take, but because of my GI issue and reading the warnings on these tablets, it categorically states that these should not be taken if you suffer from Liver, gallblader or pancreatic problems. It's also very common to get up set stomachs darker urine etc in the first month or two taking these tablets and I know I might be being unreasonable, an embarrassment, immature etc, but if any of those symptoms appeared along with the steatorrhea, I'd be 20 times worse.

I also admit I'm currently suffering from health anxiety, but like i said previously, people can convince themselves that their headache is a brain tumor or that one of their muscles are a lump, but you can't just imagine pale steatorrhea. It was physically there I saw it with my own eyes. had i not, then yeah, I come down on the side of the doctor and put it down to something mental.

Looking back, for years I've been unable to hold fats properly. Rushing to the loo sometimes after eating a Chinese, greasy pizza or a very oily meal. Funnily enough, I was always ok in the morning and afternoon eating fatty foods. It was only my evening meal I had issues with sometimes. The codeine I've been on for 2 years has considerably masked this.

I simply can't afford to go private. Looking at my local prices it's around 1k all in. For the scan, the consultation and follow up. I've been out of work due to my back for the last 3 years (was diagnosed via MRI). My wife works full time, but we have a mortgage, bills and a kid

I just want all this to end and not to burden my partner with all this as she has very elderly parents that are not keeping well and has a 8 year old kid to run around after. She doesn't need this. She works in a legal office and most days she's run off her feet. She says she doesn't mind, but i think she does.

No one taking me seriously, saying it's all in my head - because of stress, bad diet is absolutely destroying me inside.

I know this is a truly awful, awful thing to say on this site when people themselves or have loved ones that have been diagnosed with this awful disease, and would probably give their right leg to be in my position of being un-diagnosed, but i feel even getting this sort of dreaded diagnosis would be preferable to where I currently am. If it does turn out to be a pancreas issue no one is going to believe me until I turn yellow.

Re: Please help me, scared witless

Posted: Thu Nov 05, 2015 4:34 pm
by PCUK Nurse Dianne
Hi BlacJAC,

I thought i would add some information here as it may be helpful for others. Thank you BlacJAC for sharing your story and sorry this is causing you some angst. Thank you to the forum members for all your reassuring answers.

There are certainly other reasons why you may have some of these symptoms. Without causing you alarm some of the other conditions that can cause similar symptoms (including loose stools or similar to steatorrhoea) are: Coeliac disease, Crohns disese, small bowel syndrome and bile salt malabsorption problems. Sorry, please do not be alarmed by all of these terms that may all sound foreign to you, however this is meant to be reassuring. I also note that you have had some alopecia and skin conditions and sometimes these may be due to an 'autoimmune problem' that may need to be further investigated. I know it is only human nature to consider the worst, however as was suggested it would be helpful to 'step back' and make some notes of your symptoms and their relationship to other things - so bowel actions after meals, pain, the amount of medications (Codeine) taken and any effect this may have on stools.
Try not to change too many things at once, as you will not know what is making the changes. You are correct about the need to be on a diet with gluten in it for 6 weeks, GPs will often say that many people are undiagnosed with Coeliac disease as they have already taken themselves of Gluten in their diet. If you do go back to a diet with gluten in it (so you wheat products as you mention), keep notes so that you can then notice the differences, as you have already. Patients who have a diet with a lot of fat in it can also develop a 'fatty liver' - please do not be alarmed this will settle with time off a fatty diet.
You also mention pain that may be associated with constipation, this can be a very real symptom. Constipation and wind pain can be very painful, and if you have been taking codeine for a long time and inadequate amounts of fluid, you may find the constipated stools will take some time to move. Have you been given any advice about stopping/reducing the codeine or some other form of pain relief for your spinal problems? The sensible thing is not to stop the codeine completely as you will have rebound pain but slowly decrease this and find another form of pain relief.
I also note your comments about the Chinese meals, and this would be a classic for causing some urgency or diarrhoea for some people. Given that many chinese foods are heavily laden with preservatives (especially MSG in some) this may be what has upset your system. The preservatives are used to enhance the flavours, and also be aware that much of this food is not cooked for long periods of time, often rapidly cooked like stir fry meals. Again this is something that would be worth making notes about, so you have a good picture yourself of foods to avoid during this anxious time.
Please do not hesitate to be in contact if we can help further, and of course Forum family please do continue to give your feedback and thoughts.

Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

Re: Please help me, scared witless

Posted: Thu Nov 05, 2015 4:41 pm
by BlacJAC
EDIT: I posted this at the same time you posted your post Dianne, so never read your post. Thank you so much for the reassurance. It really has made me feel better.

Small update:

Had second round of blood results come in

Amylase - 36 (normal 23-85)
Lipase - 20 (normal 0-160)
ALT - 20
AST - 16
Kidneys text book ok according to doctor

Can't remember the other numbers, but no anemia, normal calcium, magnesium, no raised inflammation markers etc etc etc. They are all pretty much the same as they were 2 weeks ago.

Spoke to the GP about getting a scan and the frame of mind I'm in and she categorically stated that I would not be eligible for a CT scan due to my bloods being picture perfect. I finally convinced her to get an US, but again, she said she expects the request to be refused. 8 weeks before i hear back from them.

Could chronic constipation, that's been going on for the best part of 2 years actually cause all my symptoms? Because she seems to think that's the issue. My left side of my colon is very, very tender and sometimes feels distended. She felt it too. She said that will be inflammation from the chronic constipation and can take months to settle. I shouldn't expect to see results within 3 weeks. It can and will take months if not close to a year.

My mum and my sister aren't good with fats either and the doctor said some people just aren't good with fats regardless of health. I have undigested food in my bowels and that I do accept may be down to the stress. God do i feel stressed. The infamous your bloods are fine so it's probably IBS line got dropped into the conversation for the first time too. As far as I'm aware IBS is a process of elimination, not a diagnosis straight off the bat.

I'm making my GP out to be a dragon, she's not. She's a very nice person and some of my frustrations are probably making her sound worse than she is.

Re: Please help me, scared witless

Posted: Fri Nov 13, 2015 8:03 pm
by BlacJAC
Got US scan on the 3rd dec. The doctor hurried it up, as I went in and demanded to be referred to a GI specialist and not the other one I was given at the A&E, which said it was nothing but constipation. She was kinda shocked at my weight loss, however, I think that may be down to eating next to no fats and stress for the last 4 weeks, but wasn't going to tell her that. was also eating next to nothing either. Now the anxiety has subsided a little I'm eating more frequently now and kinda feel better for losing the weight and eating regular meals and more importantly a breakfast (special k/al-bran with berries or bananas) for the first time in years.

I'm also caught between a rock and a hard place as far as the laxatives are concerned. I've went down to just one dose a day. On the one hand, I'm holding the food I'm now eating, but when I take the laxative I can feel it going through me and 30 mins - an hour after taking the laxative, I'm emptying my bowels and the food I've eaten recently is going right through me. On the other hand, if i take none, then I can feel the constipation happening.

I've taken one in the morning and it means i can't take anything until around 2ish as that's when my bowels feel calm again. Afternoon, same issue and if I take it at night, I'm getting up during the night. Just can't seem to win with the laxatives. Left side of my colon is feeling very irritated and i suspect it's inflamed/raw with the long term constipation and now that's shifted hopefully that's healing.

Re: Please help me, scared witless

Posted: Tue Nov 17, 2015 4:04 pm
by PCUK Nurse Jeni
Hi BlacJac,

Jeni here, one of the nurses.

Regarding the laxatives, I note that you are taking all-bran and fruit for your breakfast? (and special K sometimes too).

All-bran is one of the very best natural sources of fibre on the market, apart from things like Scan-Bran, which can be bought at health shops, but don't taste too good! If you are taking all-bran for breakfast, and since you have made a lot of dietary changes (well done), then its very likely that you don't need the laxatives on the day you have all-bran.

All-bran usually results in a pretty good bowel motion, and this is usually 1-2 hours after eating it, or sooner. It could be that you can try the all-bran, and no laxative, and see whether this produces a good bowel motion - and of course, drink plenty of water, or it will have the opposite effect, and bung you up. I would try this, and see if it works, and leave off the laxatives or have one every other day.

By far, its better to have natural forms of stimulants, than laxatives. We often have to give advise about constipation, and this is where I usually start - more fibre, fruit, veg, water, exercise, and THEN, laxatives if these don't work.

Hope this helps?

Re: Please help me, scared witless

Posted: Wed Nov 18, 2015 9:35 pm
by BlacJAC
Hi Jeni, the advice you've provided is greatly appreciated.

Like others have suggested, I began taking a food diary and funnily enough, only on Monday did i realise that the laxatives affect me more on days i have taken all-bran. I have switched to all-bran on a daily basis as like you stated, it seems to do the job as effectively.

Since i got my scan appointment I am in a much better place mentally and some of that is down to not inspecting or obsessing over what I'm doing in the toilet. Not looking because the way i see it, I'm getting the scan and nothing is going to change by me inspecting them and fretting even more. Since Sunday I haven't had any diarrhea and as frequency goes, I would consider I'm back to being normal for the first time in years. Really feel I've turned a corner in this respect.

Still got on-off upper right sided tenderness, but I accept that isn't going to go away any time soon. Something i have noted since writing everything down, this pain almost always appears 2 hours after taking codeine and can remain for a good while later. Cut out the morning codeine now (down to 60/1000mg daily now)so most of the time I'm relatively pain free.

Thanks again for the advice given.

Re: Please help me, scared witless

Posted: Thu Nov 19, 2015 11:28 am
by PCUK Nurse Jeni
Fantastic news BlacJac!

A very different "sounding" person to the one who first posted - how great is this!

So pleased to hear you have turned a corner regarding your bowels and not watching what's going on with them all the time - a very big "well done" - and pleased that you are feeling brighter, and you certainly sound less stressed and worried.

I am sure the scan will further help to put your mind at rest.

I hope things continue to improve for you.

Kind regards,