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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

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  • philippa61759
    philippa61759 Amarna

    Posted

    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.
    • Amarna
      Amarna philippa61759

      Posted

      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.

    • philippa61759
      philippa61759 Amarna

      Posted

      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.

       

    • Amarna
      Amarna philippa61759

      Posted

      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 rolleyes 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!

    • philippa61759
      philippa61759 Amarna

      Posted

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

      Posted

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

       

    • astrozombie
      astrozombie philippa61759

      Posted

      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.

       

    • Amarna
      Amarna astrozombie

      Posted

      I never thought myself to be there anxious type of person, I've had a pretty stressful career and actually enjoyed the environment. There's definitely a corelation between it all though, no arguments there.

      It seems to be a bit of a vicious cycle. One the one hand Philippa is right that anxiety can likely lead into it but the same can be said in reverse. That you develop the problem and thus the anxiety joins on from it.

      In my case I was a completely outgoing and happy person until the point I started having so many digestive issues. After that point though, definitely can relate to the anxiety completely.

    • astrozombie
      astrozombie Amarna

      Posted

      I suppose I do worry.  I like to have enough funds to pay the mortgage etc.  I used to have regular deadlines which had to be met so I have had a stressful career too and managed people along the way. 

      I suppose I have aways had the anxiety in my old role as anyone in the business could impact upon me so I had to check many people were doing their job correctly for me to do mine.

      I have definitely become more anxious since the illness started regularly so anything from that time had to go job, girlfriend etc.

      I was too. I used to travel 100 miles regularly to see my then g/f but the more I became ill the less I wanted to travel so I would either travel later or not at all.  Then I started to be ill when I was with her and in the end it was just too much.  I could not stand to be around people when I became ill.  Someone else used the words self disgust and I believe that is what I was feeling and still do.

      I used to walk regularly for miles now I walk within 20 mins of where I live and I know shortcuts to get back quickly. I have also given up going anywhere like a place of work so I have become more hermit like.

      I too can relate to the anxiety.

       

    • Amarna
      Amarna astrozombie

      Posted

      Yeah I know how you feel. Once it kicks in it really steps up the pace. I was similar traveling here there and everywhere but overtime little things give you pause that didn't before.

      Before you know it it's like everything is on shut down. For a period of time I was stuck at home so I never really noticed it creeping up on m. Then bam, all of sudden there it was where it shouldn't be.

      Be nice to return to the carefree years of a decade ago but it's sure easy to feel down in the dumps about it. That only gets worse the longer it's left.

      With a number of people relying on me to be at full steam so to speak, I can't really afford the downturn in health. Be nice if we could all find an easy solution, never that easy though.

    • astrozombie
      astrozombie Amarna

      Posted

      Indeed it does. That is definitely true. Definitely re: shut down. I am in that stuck at home mode. 

      Most definitely. I definitely do re: down in the dumps as I get calls about jobs and think yes that would be great but then think no I would have to leave here, my palms start perspiring and I decline. 

      I have no one relying on me I could spend all day in bed if I desired and no one would notice. I am constantly searching for the elusive solution.

      I could do with an upturn in health to get out of here again.  

  • astrozombie
    astrozombie Amarna

    Posted

    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.

    • Amarna
      Amarna astrozombie

      Posted

      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!

    • astrozombie
      astrozombie Amarna

      Posted

      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.

       

       

    • Amarna
      Amarna astrozombie

      Posted

      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.

    • graham9772
      graham9772 Amarna

      Posted

      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

    • Amarna
      Amarna graham9772

      Posted

      Point taken Graham. What works for one doesn't for another. Certain horses for certain courses, so to speak.

      I'll stay mindful and adhere to it properly, once I've looked it over of course.

      Thanks again.

    • astrozombie
      astrozombie Amarna

      Posted

      My pleasure

      I know it can feel like that and IBS is very complicated.  It is not like a broken leg where there is complete consensus.

      One thing to remember is that with the tests they have done they tend to pick up a lot within these tests so endoscopy and colonoscopy as I have asked for certain tests and they said they would be picked up with these 2 tests so I have to trust to some degree and they assure me there isn't anything wrong with me.

      That is my main issue too so I have been trying to attack this problem in a new way.  I started a thread called Triggering my own Illness because my thinking now is if I can cause myself to go to the loo and even if minor regularly it may reduce the bad illness later so I have been purchasing things like clementines as someone mentioned orange but I bought one and could not open it so clementines are form of orange so thought I would give it a try.

      I am hoping to stop build up which I believe makes me ill and the only way I can do that is becoming more regular but I am struggling with that.

      I have done all the work either myself or with assistance from people in here recently.  I have only been here briefly but I have learned so much.

      Well I am not working at the moment so I have cut out a lot of my stress but I can not remain out of work for much longer so I am going to have to return to the job market at which point my stress levels will increase so I need to know certain foods which may make me run to the loo.

      I have alleviated the symptoms but they will recur when I go back to work I am sure.

      A long time ago for me too but never fancied healthy eating until I was forced.

      I am on the AJN trying to find foods which will not make me ill diet whilst at the same time will lead me to the loo.  So only in the last few weeks I have switched to porridge from muesli.  I switched from sandwiches to salad but I am limited in the foods I actually like.

      Indeed I agree frustrating.  I can not sit at home forever scared of leaving the loo for more than 30 mins at a time.  It is a ridiculous situation.   

       

       

       

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