Severe abdominal distension for over 2 years. What is going on?

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Hi. I'm a 55 year old female weighing 8 stone 9 pounds and have an active lifestyle. For over 2 years I have been suffering with severe abdominal distension and varying levels of pain/discomfort. I am getting near the end of my tether with frustration at what is going on with my digestive system. The distension occurs every day from mid-afternoon onwards. By the end of the evening my girth can be up to 2 inches larger than it was in the morning. My abdomen feels hard and swollen as if it is pumped up with gas and is very uncomfortable. When I lie down in my bed on my back, initially the discomfort eases a little. However after about 5 or 10 minutes, I feel pronounced 'movement' in my abdomen - a sort of popping and shifting feeling - which rapidly becomes uncomfortable. If I lie on my side (either right or left) the movement quietens down a bit and I am sometimes able to pass a little wind which can ease the discomfort temporarily. (During the day I seem unable to pass any wind at all.) However the discomfort then builds up again and I have to turn onto my other side for it to ease a bit. This can go on for ages. I have noticed that if I lie on my right side for a while and then turn on to my back I have a bulge in my abdomen on the left hand side, and vice versa. Is this gas build-up? Can gas switch sides like that?

It all started out of the blue in January 2015. At first I thought I just had a stomach bug but after 10 days it was no better so I went to the doctor. Blood tests were all normal and I was prescribed Lansoprazole to reduce acid which didn't help. This was then stopped while I was tested for H. pylori which was negative. I was then prescribed Ranitidine and referred for an endoscopy. However before this could take place I had an episode of excruciating pain high up in my abdomen late one evening and ended up in A&E. An x-ray showed a greatly enlarged stomach but a CT scan a few hours later was normal and by this time the distension had gone. The next day I had the endoscopy which was also normal although the scope was unable to get beyond D2. 

To to cut a very long story short, since then I have had:

 a barium meal - normal

an ultrasound scan for gallstones - which I do have although they don't appear to cause me any pain

an MRI small bowel - again showed an enlarged stomach and also some food still in the stomach despite fasting, otherwise motility was normal

a hydrogen breath test for lactose intolerance and SIBO - negative

a gastric emptying scan - showed slightly delayed stomach emptying, a 'lazy stomach' rather than gastroparesis

gut-focussed hypnotherapy - didn't help

have undertaken abdominal Pilates exercises, working up to 30 minutes a day - didn't help

low FODMAP diet - didn't make any difference to my symptoms

We now seem to have run out of ideas. I have discovered that by keeping to a low fat diet I can pretty much stop the intense upper abdomen pain but the distension and lower abdomen discomfort continue. Throughout this whole ordeal my bowel movements have been totally normal, both in regularity and consistency - there is no hint of diarrhoea or constipation. 

Does anyone have any idea what might be going on with my digestive system? Any help or information gratefully received. Thank you.

 

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  • Posted

    Well I'm back with an update of sorts. The 3-day stool test didn't find anything unpleasant lurking but I also had various blood tests done. Mostly well within normal ranges but my gamma glutamyl transferase (GGT) is flagged as high. Normal range is stated as 6 - 42 but mine is 88. 

    From what I've read so far on the web this is a sign of liver damage and I'm probably a closet alcoholic! Seeing as I don't drink this is a bit of a mystery. 

    Apparently another test frequently done along with GGT is for alkaline phosphatase (ALP) for which I'm normal with a level of 53 in a range of 35-104. 

    These results were just posted out to me with no covering letter or explanation, so after the Bank Holiday weekend I'll have to ring the hospital to find out what I'm supposed to do next.

    Has anyone else had symptoms like mine and had a blood test with a high GGT level? 

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    • Posted

      More importantly: how is your pain right now?

      Good you did a meticulous parasite/pathogen stool test! Happy doc did a 3 day sample (as so many don't).

      So nothing found there (in PCR also covering the Bhominis and Ehistolytica), please always have a print out to see what was tested and how, not only 'culture'.

      I have to say we also did a complete fecal stool assessment, but it has to be paid privately (to see % of non pathogenic bac distribution). Still waiting for results as it takes a month.

      Throwing in L.rhamnosis  LGG currently in 15Billion units per day as a probiotica and 10ml Aloe vera just to support guts a bit. 

      As to GGT,

      that is one of the most sensitive markers/enzymes, you drink a glas and up it goes as alcohol is liver toxic,

      sometimes even diet change can reverse a slightly raised GGT (look up fatty liver diets) when it is simply on its limit with work.

      GGT-THE parameter to check on those, who were blood alcohol positive and are professional drivers.

      Well 88U/L, yes elevated, but mind you, it can go into 100s.

      Usually GGT is only false high in high hemolytic sera (=when red blood cells burst, be it blood sample got too hot or cold or taking was a squeezing effort, red cells have enzymes in them in higer levels than in plasma, hence wrong findings when red blood cells burst and release their content into plasma/serum)

      GGT will also go up if you take medications though.

      Do you take any meds? 

      I personally would think of cardiovascular diseases as GGT is a pretty good marker to say 'take more care of me please with diet and meds' and

      ask hospital/doc, for re-check and if they can do AST ALT and triglycerides then too?

      Note all medications you were taking

      and have a diet that supports your liver function.

      Then you know more.

      You had an upper abdo MRI (described stomach), so liver was seen, right? (I had a benign liver tumor, hence GGT was double upper limit)

      I am startled that you got results posted.

      Yes ring and ask please!

      Normal  ALP is a good sign though, too.

      Please cross check with doc and if possible at a point of time re-check with other parameters and have  a liver friendly diet till then.

      And see then what your GGT does.

      All the best!

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    • Posted

      Hi Sanya and thank you so much for your very helpful and thorough post. 

      At the moment my pain is mainly at the discomfort level, although I have had a few episodes of severe upper abdominal pain that radiate through to my back and last anything from 15 mins to a couple of hours. It might be coincidence but these pain episodes only started up again when I was taking the probiotic Alflorex (Align in the US).

      For the first 2 weeks of taking Alflorex the distension was worse, then I had 2 days of non-stop gurgling and 'movement', and then suddenly the distension was greatly reduced. Great I thought, and for 5 days I felt a lot better with hardly any discomfort. Then I started getting low level pain again, mainly in my lower abdomen and almost constant whereas previously it only started later in the day. I read that some users of Alflorex suffered digestive discomfort with it, so I persevered for another 3 weeks but then stopped taking it. After about a week the pain seemed to go, although I still had odd days when it returned for no obvious reason. However the distension also returned.

      I have now just started taking another probiotic Vivomixx (also known as VSL3) in the hope that it will reduce the distension but without the pain. Too early to know yet as I am only on day 3. 

      Getting back to the GGT level. I haven't had any alcohol since my abdominal troubles started, so almost 2.5 years ago. It was mentioned as a stomach irritant so I just cut it out, along with caffeine. Before then I was only an occasional drinker anyway. 

      I am not on any meds other than HRT. Apart from my abdominal troubles I seem to be pretty healthy. Whenever my blood pressure has been taken it has been very good, I eat healthily and walk about 6 miles everyday. I have looked at the fatty liver diet and it seems pretty much in line with what I eat normally anyway.

      The MRI scan was for small bowel motility. I know it showed some food remaining in the stomach but do not know how much of the liver was included in the scan. 

      I will certainly do as you say and get more information from the doctor. ALT features on my blood test results (and is normal) but there is no mention of AST or triglycerides. 

      Again, thank you for your help. I will post again when I have spoken to the doctor. 

       

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    • Posted

      I'm curious as to why my post needs moderating. Nothing controversial in it. 

      Yes, I'm feeling ok thank you - apart from the now usual pain and discomfort. 

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    • Posted

      Ah, yes, usually brand names get grounded.

      Had to look it up:

      - Bifidobac infantis 35624 (no dose found, CFU), quite a raved product, claims to be against bloating, hm, unless you react to something of the fillers/packing: Maize Starch, Pregelatinized Maize Starch, Hypromellose, Magnesium Stearate, Titanium Dioxide

      - other one a high 450 billion CFU mix (Streptococcus thermophilus, L. acidophilus, L. plantarum, L. paracasei, L. delbrueckii subsp. bulgaricus bifidobacteria breve, B. longum , B. infantis, (maltose), anti-caking agent (silicon dioxide))

      We tried B. bifidum MIMBb75 for half a year with zero impact on guts, the oh so IBS cure. one gets so desperate.

      If you have upper abdominal pain and an elevated GGT, I would enquire about liver, if it was looked at.

      Or what other ideas doc had.

      You are right, radiologists look very specificly at each indication/question and not at other also visible parts if not obvious to the blind eye as time is money.

      (We had abdominal x-ray for fecal impaction question though, not only was the loading in ascending colon overlooked as if radiologist only looked at rectum, which is clearly a mistake re indication, but the hips were visible too and a problem visible, but not noted then since not in indication question to look at and not that obvious)

      Oh yes please, let us know when spoken to doc again and which further direction or even diagnosis.

      You are a very fit person, what else could you actively do.

      Yes, get re-checked please. ALT normal is good too.

      An upper belly ultrasound?

      All all the best!!

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    • Posted

      Hooray! I didn't want to have to type all that out again.

      Well, I rang UCLH yesterday (who were the ones that ordered the blood tests) only to find that I have been discharged from their care (although nobody had bothered to tell me this) and it is now over to my GP. So I rang the GP's surgery and they hadn't received a copy of the blood test results. So I rang UCLH back again and they said they'd send another copy to my GP. I'm not very impressed at the moment. It seems UCLH have exhausted their standard repertoire of tests and that I'm now something of an inconvenient nuisance. The consultant doesn't seem to have the time or inclination to think out of the box. :-(

      In the meantime I've been reading up about GGT and I'm beginning to wonder if I've got two separate issues going on. I'm known to have gallstones which could account for the elevated GGT level. The severe upper abdominal pain that I get infrequently could be down to the gallstones. Whereas the distension and lower abdominal pain and movement are probably down to the functional GI disorder. 

      Anyway I'll have to wait until my GP receives their copy of the blood test results. 

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    • Posted

      Uagh, yes,

      the communication is so key and so often not working.

      But you have your copy, you could also take that to GP to avoid further delays. ?

      The moderate GGT elevation is something for the GP to further investigate or exclude, compare with previous GGTs if you have any.

      (As said, I was your level for years until I got an upper abdomen ultrasound and it was a physical benign tumor squeezing the cells, nothing chemically going on.) 

      Looking at heart disease parameters is a good start, too. (e.g. triglyceride, glucose...)

      Yes, people can have as many diseases as they like,

      the upper and lower abdo problems could be one and the same or be very different and not connected. Gallstones if silently not blocking should not make problems, but who knows, maybe they are blocking or irritating.

      Yes, please, I hope your doc gets you started on looking up on liver/gallbladder/duct via further blood tests (bilirubin, all liver enzymes, CRP, triglyceride....), and ultrasound and go from there.

      So far your few enzyme levels do not sound highly alarming, yet you need to know, if something was underlying.

      All all the best!!!!

      Take good care and pls keep us posted to see, where symptoms lead to which diagnosis.

      TA!

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    • Posted

      PS: 

      1) Common bile duct stone can simulate acute hepatitis and AST and ALT would be elevated immediately, GGT and ALP delayed.

      --> your ALT is normal......

      2)  if only GGT level is elevated (other liver enzymes normal), this can be via alcohol or aromatic medications with no actual liver disease. 

      --> HRT is aromatic medication (ring structure), note: not all HRT get a higher GGT. Apparently those with Turner Sydrome -please don't take that personally, I see it plain factual and scientifically- actually tend to higher isolated (without other liver enzymes going up) GGT levels, too.

      Please have a look into the leaflet of HRT of side effects. Maybe gives some clues to discuss with doc.

      I still think an ultrasound

      and a new blood sample covering all liver enzymes and more would be really good too.

       

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    • Posted

      Again, Sanya, many thanks for your help and information.

      I didn't know what Turner Syndrome was but have looked it up and no, I don't have that.

      The HRT I am on is a combination of estradiol hemihydrate and norethisterone acetate. I have left the brand name out to avoid further lengthy moderation. :-)

      I will let you know what my GP comes up with. 

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    • Posted

      Just to let you know that despite chasing the GP's surgery for a week I'm still none the wiser as to what should be happening so have booked a telephone consultation with one of the doctors. First available is 21st June (which isn't very impressive either) so watch this space!

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    • Posted

      oh yes, can so relate to that, waiting, waiting, waiting. We have 7 or 14 months waiting times for specialists....only to find out, it was the wrong one.

      Hope your waiting was all worth it and get an answer!!

      BTW, side note:

      we got our fecal microbiological analysis back, overgrowth of bifidus bacteria. ROFL. We should not take any bifidus or lactobacillus probiotica anymore! !! How funny is that. Who would have thought.

      ( stool is yeast free, rest was more or less good, too, maybe push some Butyrate producing bacteria as they were very low, but it is very hard to find those products as the market is flooded with lactobacilus and bifidus, closest was a clostridium butyricum probiotic product, that I could find. We are taking Aloe vera anyway and will add arginine as food for those butyrate producers. We have no FODMAP diet success, so had no fear of introducing Aloe vera slowly, which is a fructo-oligosaccharide, that others oh so have to avoid....balance act, always a very individual balance act)

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    • Posted

      for the FMA one has to be off probiotica and antibiotica and my patient daughter was, but a bifidus overgrowth....and too little butyrate producers....

       

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