All my life .....Stomach trouble

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Hi, I am 45 years old and suffered with so many stomach symptoms over the years that I hope this information might help someone to not feel alone!!

 

As a child my stomach would make me lie down and rest and often my appetite would be very small. When the bad stomach passed I would be able to eat normally and I would eat everything. I could never identify a specific food causing the problem, but I could have an attack and be sat on the loo, until it passed. Rest was always a big healer and the only way my stomach could sort itself out. I was a nervous child and most people would say I was nervous, but this would happen suddenly sometimes and I knew in myself that my stomach didn't work properly.

At the time my gran who was a nurse almost guessed that there was something going on with my Liver, as I looked mildly yellow.

As I got older my stomach problems expanded due to the stress of going to work. At 17 years old the episodes of stomach trouble were then diagnosed as IBS. The fatigue and shear exhaustion kicked in, as working made you tired and the rest was not available as it was when you were a young child.

So I battled on with these episodes that would occasionally make me have time off work or I would suffer at work, just thinking that I have IBS and this is the way I am. I never really ever felt well. The attacks stopped my career as a qualified Spatial Designer and stopped my confidence to move away from my family to London where the work was, as I knew that I would have days that confined me to lie down and rest. How reliable would I be in a fast paced career like that.

So by know I take an office job in my 20's where I knew I will could sit down on those bad days and struggle on with out being noticing I was ill.

As the years went on, I had two boys 12 months apart. One birth was very demanding and stressful on my body as he was very large and the other was so large that a C section was performed. After the births, both being difficult, I looked so yellow. The photos of me show how my body and my Liver must of been coping. And off course at the time, I felt ill.

This period of time was a blurr. Obviously with the care of 2 babies, the exhaustion of two years of being pregnant, followed by two heavy babies to lift, no sleep, breast feeding and of course my very bad stomach. I felt terrible.

So I ended up at the doctors feeling so sick and ill.......I ended up on anti sickness drugs to cope. Then the doctor did a blood test and continued to tell me that I had IBS and was tired. Then the Gilberts Syndrome was found on the results and I was told that this wouldn't be causing me the symptoms.

So like you do, you look on the internet and everyone is saying about the symptoms that I had. Goodness, a revelation........but no medication or acknowledgement of these symptoms!

I have explained to many doctors that people report symptoms but they almost don't want to hear that. Are they trained to believe only what they have been told. If lots of people have stomach pain, exhaustion etc, why are they not open to this?

So at this time I am about 34 years old. As my two boys grew up my pain then progressed and with my pain over the years some other factors have come to light that I am convinced may be related or are linked by the Liver's difficulties.

I have several allergies now as I've aged.... Hayfever from age 17 years, Allergy to Mould, Rosin (Sap of Pine Trees), Sodium Metabisulfite (preservative in Food medicines), very sick on aneasthetics. My body and my immune system is under stress and can not process these.  All of these allergies have been confirmed by the hospital and often my stomach will be bad when there allergies flare up.

Also I was diagnosed with Endometriosis and after years of so called IBS the Endometriosis was also on my bowel and was causing bowel problems. 

Endometriosis is an autoimmune condition and I always think if my immune system is suppressed, surely the vital role of the Liver and the high levels of Bilirubin must be a factor in the ability for my body to cope. I had my Ovaries removed at 41 years old and I was so lucky that I had two children, as the Endometriosis had not stopped me reproducing, like so many women.  

So I am now 45 years old and experiencing days of terrible pain in my stomach, odd episodes of needing the loo and lots of tiredness. I have brain fog alot and can not concentrate. Some of this pain in my stomach might be scar tissue from the Endometriosis and I fear bowel problems/function problems. But after having  breath tests,  3x Endoscopies, 2x CT scans, 1x MRI last year to look at my stomach in detail and lots of blood tests over the years, everything single one has come back NORMAL.

Everytime the result is normal it is such a relief, but you almost wish they could find something wrong with you, to fix it and then stop the stomach pain.

I know get pain under my right rib cage which is new this year, so possibly in the Liver area. My Doctor says it could be Fibremyelgia. Another autoimmune condition!! Is there a link here? I think it is my liver or Gallbladder, but I am so tired of guessing and just have to keep remembering that all my results are NORMAL and I am well!!!!!! Really!!

I feel a lot of pressure in my stomach now and I have back pain aswell. I lead a very busy life style and I'm sure that really you have to be completely lazy and rest to control this. When and if I feel a bit better, I will write on here again, to remind you that there are good days. If only there was help. I wish doctors and scientists would get on with helping us.

Please can more research go into this condition!!

So today I am sat here 14th September in lots of pain in my stomach, this episode started mildly at first in June/July. Whilst on holiday in July, probably after eating lots of lovely food (full of fat and cream) that was there in the restaurant, having some alcohol of which I can't usually tolerate at all and after the stress of getting everything done to go on holiday, I had a terrible night sat on the loo feeling sick and a day in bed exhausted unable to move. The following days I sat by the pool and went onto a basic diet and started the detox, that I forget I should be on permanently to stop the pain.

All Summer I have been in pain and find it hard to sleep. When I sleep at night my stomach can actually wake me up with the pain. It almost hurts more when I am lying down. I get pelvic pain a lot and a deep pain in the same area of my stomach all the time. The weird thing is that when the pain lifts, it goes suddenly! And I almost forget how bad it gets. But to be honest it never really leaves me for long.

I hope this doesn't make people feel worse, as I have definitely had a journey. I live in fear of something being seriously wrong with my stomach and they are missing it, but this is because the pain for me is so specific to one area in the middle of my stomach.

I take Easomepresol tablet for the acid and belching that comes with it for me. And I have Meloxicam for the pain. But I find that I can take them for several days initially to calm down a bad episode then the tablets make me feel ill, probably the Liver not liking the drugs as it has to process them as well as being compromised by Gilberts Syndrome.

 

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  • Posted

    Hi!

    Gosh, poor you! I don't think I can be much help, but just knowing that there are others who have similar, but obviously not identical, difficulties may be of some small comfort. 

    I have been been incredibly lucky with my Gilbert's Syndrome as I have never had severe symptoms. It is only now with the added complication of a huge hepatic cyst that I am suffering somewhat. However, I too am intolerant of alcohol and fat.The former I deal with by not drinking anything alcoholic. The latter I manage by eating a very low fat diet - it makes a huge difference. I've discovered the delights of skyr (high protein, no fat), quark (ditto), Quorn and, best of all an air fryer. The latter is wonderful as it does all sorts of things from roast potatoes to eggy-bread ( a childhood favourite) with little, if any, fat. I can really recommend getting one as it improves a low-fat diet no end! I also suffer terrible sickness when I have a general anaesthetic and now tell the anaesthetist about this before any surgery and use all my powers of assertiveness to insist that they put an anti-emetic in the anaesthetic brew. It has worked brilliantly on those few occasions when I have had to have surgery.

    I think that more awareness of Gilbert's Syndrome would be very helpful. Not all doctors are dismissive. Recently a young ( well, they all seem young these days) registrar at the regional liver centre (where my cyst is being dealt with) asked me about my Gilbert's Syndrome and was amazed when I said that I had never experienced jaundice. He was very well informed about the potential symptoms. It may be that the specialists at a regional liver centre have more knowledge - is that something you could pursue?

    I don't suppose this helps much, but good luck and I do so hope that you can keep strong and positive.

     

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  • Posted

    Hello sharon Im 15 and I definetly can fell the same problems like u I had problems concentrating and my stomach was extremely bad but after a lot of research we (my family and me ) found the problem which is caused by your own body did metabolic disease KPU if not u seriously should do some reasearch about this kind of topic all your symthomes can belong to Kpu and you easily can fix that I did a detoxication with my alternative practitioner and I took my vitamines and I happily can tell u that EVERYTHING got fixed by that my stomach problems my sleeping problems If u cant find an alternative practitioner who knows KPU than go to my one give it a try I really think it will help u sry for my gramattic mistakes

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  • Edited

    Hi, I want to say that your experience basically mirrors mine almost completely. I don't agree endometriosis is autoimmune however I have heard that before, I was just convinced it was a school of thought rather than factual thus far. Either way, I am 42 at this time recently diagnosed with GB I have been told I have IBS, and certainly have endometriosis, I have a pituitary cyst and some in my thyroid as well(I could go on as you might understand like migraines and other symptoms). I had my appendix and gallbladder removed so my guess would be that your gallbladder is giving you some symptoms in your upper right ribcage. I have found seeing a naturopath was helpful and they had be start taking milk thistle for the GB syndrome. I think the combo of life stress heavy periods and pain related to endo make a double whamee with GB and even if we don't get liver issues a professional dr not a robot would be able to put the same two and two together we both have about how it impacts our health... anyway I am also told to eat 1 lb of cruciferous vegetable a day, they asked me to add more natural meds that I have not started and still see improvement based on how these things help detox the liver of estrogens and help do something to help estrogen receptors and its just reducing symptoms within a short time... I am careful what I eat and would call it an endo diet ish that I follow.

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  • Posted

    Hi,

    I've only just found this site and am very sympathetic to the struggle you are going through, but am immediately comforted by the fact that other people are describing exactly the same symptoms I have been experiencing over the years (confused, dizzy, twitchy weak legs, stomach pain which would wake me up (left side of abdomen for me) and severe fatigue).

    Gilbert's Syndrome was suggested to me as a teenager but was confirmed recently (I'm now 45) after the above symptoms reached a level that I couldn't tolerate, I think due to a particularly stressful period at work. I have had a huge number of tests this year, all coming back normal until someone found my Homocysteine levels were very high. I had no idea what this was but the doctor told me to take some vitamin B supplements which would help bring it down. I started with simple Boots supplements but, after reading a book on Homocysteine (The Homocysteine Solution), I upped the dose considerably and now take a high strength Vit B complex from Holland and Barrett.

    After about 6 weeks of taking this supplement most of my symptoms have reduced significantly and I feel a great deal more alert. The best thing is that the stomach pains have pretty much gone, something that used to wake me up at night and add to my fatigue.

    I have a follow up test soon to see if the Homocysteine levels have come down as a result of this but, unless there is a very strong placebo effect, the way I feel has changed dramatically. I can now tolerate alcohol again (I hadn't drunk for 8 months this year) and I can now eat fatty foods again where even chocolate gave me waves of nausea for a couple of hours at a time this time a year ago.

    The test for Homocysteine doesn't seem to be done as a matter of course but could be the thing that has pointed me in the right direction. It could be worth requesting this given your symptoms sound very similar.

    If this helps anyone else then I'll be very happy - All the best!

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    • Posted

      If your B vitamins were low it means your copper and zinc levels are low too (high probability). If that is true - you only gave some time for your organism before different problems will manifest. If you will continue taking vitamins B with high energy load on your body you will get depleted in copper, zinc and magnesium (google symptoms). I recommend you to try magnesium supplements and to do a blood test on copper. Also copper lowers homocystein ( and vice versa (google it or PMCID: PMC2671677). In order to lower homocysteine i suggest you to take b12 (you need both cyanocobalamin and methylfolate) each time you eat meat. Vitamins b2, b6,b9 will help too as well as zinc

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