Trying to trace the actual cause of my digestion issues.

Digestive health
1

So I'm new here, first time post, apologies if I'm missing some required etiquette.

I've had various ongoing health problems for some years. With the fact that it's multi-systemic in nature this might even be the wrong topic for the post entirely - but that's what I'm hoping to determine.

My issues started about 5 years ago. Prior to that I'd led an extremely active and healthy life style.

At around that point I was given a preliminary diagnosis for a connective tissue disorder (suspected Marfan) but to this date, that's yet to be confirmed (negative blood work or major criteria thus far).

As times gone on I've started to suffer with digestive issues. Which can be a potential related issue to CTD but lacking a 'positive there', I'm addressing alternatives for my low quality of life.

It's been much the same as a lot I've read here already: gas, belching (which does relieve pressure / stressed feeling) changing stool patterns (ranging from normal to undigested food, hard and black, soft and foul smelling) abdominal pain (centred around the lower right quadrant/flank) and continuing general constipation.

As a result of that I also suffer from what seems to be acid reflux, which has been completely uneffected by ppi's such as lansoprazole, omeprazole (and actually got worse on them) along with alternatives like ranitidine. I assume it's directly related.

I've been for various scans; including ultrasound recently for gall/pancreas, general hospital X-ray, heart mri. Blood tested to death and back. Infact the only thing not screened thus far is the bowel, for whatever reason that may be.

Some time earlier it had been suggested I had IBS by a GP and I was prescribed peppermint oil, which made me nauseous but otherwise had no effect.

To add to my list of problems I've been waking up with a racing heart/tachycardia and inconsistent pains in my chest (centre and left side). Things again which can potentially be related to a CTD - but also possibly digestion in isolation and general nerve irritation.

In the background of all this: I have tinnitus at regular intervals, headaches in various locations, a feeling of disorientation and imbalance, tingling in the extremities and a general feeling of being unwell.

The overlap is considerable and my GP just seems overwhelmed by the different symptoms.

I've yet to factor in food intolerance but that's another thing that's been suggested. So I've rotated my diet over the course of weeks to try and see if things resolve with dairy/gluten and so forth. No change there either.

Until I get a definitive answer on my over all disorder, which as yet remains unproven to whether I even actually have one, or which one - I'm left to my own devices.

It's my personal belief a lot of wider problems are currently caused by my digestive issues and the has pressure it creates but it's a concern when you have potentially underlying and undiagnosed issues looming in the back ground as well.

Right now I'm almost permanently fatigued, so this likely won't be the best post! Apologies for that.

To that effect any advice on how to refine / perhaps make the search for answers a little more concise, would be appreciated.

Could IBS be the foundation of my wider problems or sinething else?

The NHS in the UK aren't fast to assign visits to different departments and as such the delays and Incontinuity between departments have been considerable whilst trying to find the underlying cause.

The digestion problem is quite circular, they prescribe me medication that seems to make little difference and I've grown weary of trying different products all to no avail.

Any further suggestions as to what to investigate next would be welcome too as its now been a good many years since I've really had an 'ordinary' day.

2

Your symptoms do sound like IBS. If all tests show up nothing, IBS is diagnosed.  Everyone has different symptoms and responds to treatment differently. Peppermint tea gave me heartburn and Mebeverine gave me severe indigestion and constipation. but Buscopan and painkillers work.  I started with constipation,, stomach pain, nausea, and loose motions.  My ultrasound, celiac test and stools samples were negative and 7 doctors were baffled.  One out of eight doctors recognised IBS after three and a half months.

3

It does seem very circular with doctors, especially unspecialised GP's.

With everything in the background you get a fair amount of reluctance when it comes to performing tests but I will push more on the IBS front. They didn't really follow up on it post that brief mention from the one GP.

I suppose it made more sense for them to go CTD > GERD > constipation caused by negative reaction to ppi.

The GI Doctor at ER suggested I stop the ppi immediately as it was increasing my abdominal pain (felt like someone was stabbing my kidneys simultaneously) and to return to the GP.

So they sent me for the ultrasound post that but when that came up clear they just seem to be baffled as you say.

I'm due back again tomorrow for my 17th blood tear in what must be an NHS record of some kind.

Sigh. I've only been waiting half a decade for a diagnosis.

Thank you for the reply.

4

I agree with Philippa below the symptoms sound like IBS. Concerned about black stools. I have never had this so definitely get that checked.  If you go into your local doctor mention that they should see you much quicker. I have been ill often over 5 years but never black.

I have just had a peppermint tea.  It does not do that much but does not make me ill so I persist.  I have started with camomile in the evening.

Try keeping a diary and making notes of illness and see if you can spot a pattern.  There is not one for me but I have tried this a number of times.  We have to exhaust all possibilities.

Have you had an endoscopy and colonoscopy?  Should be standard as well as the bloods.  As you know NHS is in crisis at the mo and had that first hand from a chap I know who is a GP so it is not just junior doctors where there are problems.

I move betweeen constipation and severe illness but that is me and one thing you will note is a lot of people have different IBS symptoms for example I do not receive back pain but others' do. 

I was ill for a while before diagnosis as I put it down to being tired, late nights, girlfriend cooking in a different way or adding spices to food etc as I did not believe I had a problem. 5 years later I definitely know I have a problem but my problem has improved due to a change in diet.

5

One of my doctors even asked me if I thought I had IBS and then said my symptoms were confusing and she didn't have a clue!

If you are having chest pains and a racing heart, this may be due to anxiety about your symptoms and getting no answers.  Anxiety goes with IBS and makes symptoms worse.  I had anxiety, panic, terror, frustration and despair before my diagnosis.

 

6

Black stools are strange and they do say that should be checked.  However, eating foods containing a high iron content such as lettuce can make stools black.

7

I was concerned too, to the point I spoke to another local doctor on the phone about it.

At the time I called I had regular stools with traces of red blood - which he seemed convinced was a lower tract tear and nothing to worry about. Likely caused by constipation.

The black ones are solid and intermittent, not the tar type/diarrhoea I was told to watch out for. I'll mention it regardless at my next appointment and keep an eye on it.

A food diary is also something people keep recommending. I'd been doing so already to an extent when trying to flush out dairy/gluten for a period of time / seeing if I could notice any response to those.

So doing the same thing more broadly is definitely a good idea.

My diet hasn't really changed over the years as I've been living at home consistently pre-post problems. Obviously these things can just start as you get older though (31 at present).

Thanks for the reply. Here's hoping to some relief eventually!

8

I know! It seems they know about as much as what a laymen can achieve with a 5 minute Google search at times. It always feels as if it's just a pointless stopgap before actually seeing a specialist alot of the time. Which I'm sure is not how it should be at all.

It had occurred to me that the anxiety could be a factor but that's so frustrating I've never been the overly fearful type so to think now that I'm essentially worried whilst having no waking control over it directly is so strange!

9

I agree. From what I understand it's an indicator of bleeding somewhere high in the digestive system. Everything I read suggested that it should be more like black tar with a diarrhoea type consistency - which would indicate a lot of bleeding.

In my case it's very intermittent so you might say for every 5 or so normal stools you'll get one black one. They are solid, which made me think that it was diet related but I'll be sure to keep an eye on it and mention it to the doctor tomorrow.

10

I am a very anxious person and this probably led to my IBS.  However, I had the worst panic ever before diagnosis.

11

Could be a tear or hemorroids but either way I agree from my own experience not much of a concern but he did tell me if ever very dark in colour come back immediately and never have been.  My biggest problem was my extretia becoming more cow pat than human.

I am not an expert but just what the doc said to me so just thought it was worth mentioning.

I tried gluten free bread and it is absolutely awful so now I have seeded wholemeal.

The diary never worked for me because I may have eggs and spinach one day and be ill but the next 5 times I eat the same meal I will not be ill.  I have a fruit salad every night but I am only ill intermittently so I do not think it is the apples.

I have had to change mine as I worked long hours so eating was not a primary concen so ready meals were popular and lots of alcohol so when I first started being ill and I started a diary she, at that point, put a red line through everything I was eating.  Apparently grown men should not be starting the day on coco pops and I am older than you.

I ate like a student when I was a student and nothing changed for me until I started becoming ill and I suppose the change was forced upon me otherwise I would still be eating waffles now instead of salad.

The change for was astronomical. I had not eaten beetroot before, cucumber, celery, plums, salmon, porrridge, olive oil, spinach.  This will give you an idea of how pooor my diary was.  Everthing which was healthy was alien to me.

 

 

12

Good luck; hope you get answers.

13

Dear Amarna

If you go to the doctor tomorrow ask him about the FODMAP diet.   his is a diet that was developed by Monash Hospital in Australia just for IBS victims.  If you go on this diet for 12 weeks you will know if there is a food allergy or intolerance problem.   You can get details from the monash website.  Its free and it is being copied by hospitals in UK and USA and probably other places.    I have been using it myself for restless legs syndrome which is a related disease with great success.    You keep to the diet until your symptoms have gone or at least stabilised It is very restrictive but easy to keep to if the rewards are as potentially huge as they are for you.   Then you start eating a re introducing foods one at the time until you really know what food group is ruining your life.   Then you just avoid that group of foods like poison they are and get on with life.

If you try it don't waste your time and effort by telling your self that just one serve of garlic or apple or pear or honey or something else that you shouldnt eat will be allright.

I know if I have eaten something because it keeps me awake all night for two nights.     I hear so many people who try it but just cant give up their onions or something.   They are not really suffering like you are so stick to it absolutely.

It might not work but nothing else has for 15 years so its a quick way to discover something.

Ask the doctor for help applying it.  There is a good chance he hasn't heard of it so ask for an ibs specialist and if he doesn't help look up the internet or get back to me and dont pay your doctor's bill!

Good luck

Cheers

Graham

14

I did not know that.  Great point as if no mixed salad I purchase a lettuce occasionally.

15

Definitely worth mentioning, so thanks.

It's more than worth bringing it up with some of these health professionals as they barely seem to bat an eyelid unless you make it clear you are having legitimate issues.

They haven't tested my bowel at all and coupled with the persistent pain at the stomach/upper intestine point in the right side I'm definitely going to push more in that direction. With the ultrasound and other things out the way for the other organs it's really just that left but as I mentioned they seem very reluctant to suggest it.

Finding the root cause of the bloating and constipation I think is the paramount thing for me right now. They haven't even really whittled it down to anything yet by themselves. In a lot of cases it's faster doing the work for them - and potentially time is what counts.

The resulting pressure from gas can cause all sorts of overarching systems. It's one the key stress and axiety inducers from what I understand.

So address the cause and hopefully fix the symptoms, or at least alleviate them somewhat.

I know exactly what you mean about student diets, that's a long time ago for me but there was a time when my diet was far from stellar.

I've been on the 'healthy only diet' for some time now and can't say I've seen much improvement. I suppose like Phillipa says though, you can't pin the tail on IBS without the elimination of almost everything else. Very frustrating.

16

They told me we are the experts and the specialist said was do no get so stressed.

 

17

I wasn't aware of that but I will look into it immediately. Anything to be rid of the nightmare so to speak.

I don't particularly find any type of food moreish or addictive and I enjoy everything pretty much across the spectrum -which ironically likely makes the isolation of a certain problematic food type quite the long process! More than worth it if it's a step closer to sorting it all out.

Thanks, really appreciate the information

18

Ditto to being anxious.  I have been told before Distress by Mad Caddies is my song but may be wasted on the majority in here.

 

19

Thanks for all your help Philippa, I appreciate it

20

Dera Armana

Dont make the mistake of thinking that "Healthy" eating is good for you.

If you have some variety of IBS then a "healthy" diet will almost certainly cause you great pain and discomfort.

Read up on the FODMAP and be strictly systematic in its application.   It sounds awful at first but its only 12 weeks if you are lucky and there really are many many foods that are allowable in the diet.  Its a battle in your mind that you have to win.   Remember for you only low FODMAP is Healthy.    An apple a day will ensure you stay sick as a dog.

Cheers

Graham