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Trying to trace the actual cause of my digestion issues.

Posted , 7 users are following.

Amarna
Amarna

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.

0 likes, 41 replies

41 Replies

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  • philippa61759
    philippa61759 Amarna

    Posted

    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.
    • Amarna
      Amarna philippa61759

      Posted

      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.

    • astrozombie
      astrozombie philippa61759

      Posted

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

  • graham9772
    graham9772 Amarna

    Posted

    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

    • Amarna
      Amarna graham9772

      Posted

      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 smile

    • astrozombie
      astrozombie graham9772

      Posted

      Asked my doc about this as heard about it in here but they said there is no substitute for a balanced diet and exercise and one thing I was told to eat was apples which was a no no on the Fodmap so I am applying the balanced diet and exercise model at the current time as many of the foods on the no list are part of my diet so I know I would struggle as the yes side has foods on it which I simply could not eat.

    • Amarna
      Amarna astrozombie

      Posted

      I'm fortunate enough not to have a very limited palette as of now anyway. I eat healthily within the stereotypical idea of it anyway, but Graham makes a good point when he says that what irritates one certainly won't another.

      At the very least it's something to look into along side pursuing all of the physical avenues and tests.

      Apples, Apple cider, Apple juice. Always apples. Maybe we should have just stuck with Adam and Eve and ate natural instead of creating the over processed diet we have today!

    • astrozombie
      astrozombie Amarna

      Posted

      That is good.  I always have had just trying to come to terms with eating celery and cucumber rather than crisps and a chocolate bar was hard enough.  Certain foods though like lentils and asparagus I have tried and disgusting to me. 

      It took me a long time to switch to being healhy in the stereotypical way and it has increased the gap between illness but not eliminated it completely.

      At the moment I just need to find one or two ingredients which could trigger illness which I could take, go to the loo and then be able to get up and go out for the day.  I have not found it yet. 

      Well Graham was quite scathing about apples so I don't know about that.  Personally I eat between 14 and 21 apples between illness.

      My diet is not as overprocessed now but maybe all the previous overprocessed food like processed luncheon meat has made me ill.

       

    • Amarna
      Amarna astrozombie

      Posted

      Yeah I understand what you are saying and yeah there's a lot of room in there for complications for sure.

      I definitely don't eat as much fruit as I should. I mean that's not to say I go without but it's definitely not 1 a day or anything like that.

      Thanks for sharing all your experiences. It helps build a bigger picture of all the different angles I might cross or need to.

    • astrozombie
      astrozombie Amarna

      Posted

      I try to eat 2 to 3 portions of fruit a day now. When I was at my most Ill I did not consumed any.

      Indeed and I do the same with others' experiences. It is all about sharing knowledge.

    • graham9772
      graham9772 astrozombie

      Posted

      Dont do it by guess work

      Monash University spent years developing a diet that might just help you

      Celery is OUT but there seems no logic in what you can and cant eat.  Stone fruit is out until you prove that it dosen't hurt you.   You go back to a very basic diet and then add foods to test how they affect you.  Some people are lucky and find that they are only affected by one group of foods and others are lucky in a different way and find many foods that affect them so they can avoid them and enjoy living again.

      I hope they find that you are one of th people the diet really helps.

      But there is logic and its all explained if you read up on FODMAP diets.

      A lot of effort has been spent on helping people with an ibs problem - perhaps like you.

      Of course it would be good to check out celiac possibility.

      But speak to your doctor about the FODMAP diet.

       

    • graham9772
      graham9772 astrozombie

      Posted

      Your doctor may not be keeping up with the science or is making the judgement that you do not have IBS.

      Ask your doctor if he can say for sure that you do not have ibs.    If he cant say that then he should be helping you try the FODMAP diet.

      Go and see another doctor.

      A balanced diet is probably great for people who do not have food intolerance.  Excercise is definately good but it doesn't help IBS

      Does your doctor say you do NOT have ibs?  Be demanding    -  its your life that is being spoiled. 

      If your doctor can be sure of that then her/his advice might be good but ask what tests he has done to prove its not ibs?

      Are you in UK?

      Cheers

      Graham

       

    • astrozombie
      astrozombie graham9772

      Posted

      The first line is more familiar as diagnosed with IBS by a consultant about 4 years ago.

      I was only in the other day and a healthy balanced diet is still being advocated. 

      Well IBS has improved with exercise and eating better so I would not say "it doesn't help IBS." at all.

       

    • aveline
      aveline graham9772

      Posted

      Exercise is good for everyone - although the type of excercise may help/hurt more, but there's no science behind "it doesn't help IBS"  FODMAP should never be started before Coeliac is completely ruled out. Although it's a helpful plan for many, it's not time for Amarna to start, and maybe not astrozombie either. 

      I don't think the point of forums is to argue amongst ourselves. I'm not a doctor or an expert, I know my symptoms look like CD but are not and my son who didn't have intestinal issues is the only one of us who does have it. Ya never know! But, I know the Gold Standard of testing and consuming a fair amount of gluten is key to a proper diagnosis through testing or a differential diagnosis (like my IBS) when ruled out.

      You're correct that doctors can be dismissive and we need to be pushy when we don't get answers that help us!  And yes, what tests WERE done to see it's not IBS? That's the question!  

      GL to all!

    • astrozombie
      astrozombie aveline

      Posted

      For me it is IBS. I agree I am not here to argue. I am music forums for that. 

      Exercise has definitely helped me and so has eating a more conventional healthy diet but these have not cured me.  My last major attack was Feb 5th and last minor Feb 22nd so for me that is a definite improvement as this is twice a month and when I was eating badly and not exercising I would have major attacks up to and sometimes more than 12 times a month. 

      GP's lack knowledge in this area but I do think they try. One even said what is Fodmap and I said no idea I thought you may. 

    • aveline
      aveline astrozombie

      Posted

      Hi! Sorry - you were confirming your IBS diagnosis as I was writing my last reply so I didn't see it...It's good to have the right diagnosis and know that you can help yourself through your own choices!!  I'm much like you - my diet is good overall and when it's not (vacations, parties) then I suffer. redface

      GF, FODMAP, Paleo...Atkins...all these plans help people, no doubt. But no one way of eating is right for everyone, and if you keep out categories of food, what is your body missing?? (like my coeliac son whose nutrition suffers a bit since GF breads, pastas, etc. aren't enriched, less fibre, more fat/sugars, etc.) My IBS was dxed in the early 90s and I hated the diet I was told to eat (white carbs, bland food). You're healthy now and you know it! smile

    • astrozombie
      astrozombie aveline

      Posted

      I have the right diagnosis but at times it does not matter what I eat constipation occurs normally followed by an attack.

      Therefore even eating bad food like celery and apples does not have the desired effect.

      Indeed my doc said my diet is healthy and includes everything I need so a little worried about changing too much. 

      If I was ill all the time it would not matter but I am lucky and i am not.

      I am healthy but I still get ill occasionally. I need to find a food which when consumed leads to regular loo visits and I think this will reduce the build up and therefore reduce the attacks. That is my theory anyway.

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