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

Digestive health
1

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.

 

2

Did you ever have Ultrasound of the abdomen to check for stones in gall bladder  

3

Hi Maz61,

I feel your pain!! I too have experienced this in the past and I am going through a bout of it now. I am 55 and have been an athlete all my life, so very active. Eat all grass fed, organic etc...

In the past when it hit, I too was knocked to the ground in pain and took myself to ER (USA) and test results came back with nothing. I then found a naturopath doctor who tested me for parasite...a yes I had them! yuck. Im assuming from a trip to Peru. This was about 7 yrs ago. So I would test for that, also our hormaone have changed and/or are changing and there is data to support that the estrogen level decline can contribute to this. I would find an alternative doc who might suggests the right supplements to support your system.

Keep me posted if you find out any info. Hope you feel better soon

4

Have you had a pelvic ultrasound to check for cysts?  Has IBS been mentioned?  Perhaps try a gluten free diet and avoid gassy vegetables such as broccoli, Brussels sprouts and cabbage.

5

Yes, I did and I do have gallstones. However the pain I was getting was LUQ rather than RUQ. And it seems that a lot of people have gallstones but they only cause trouble if they get stuck in the bile duct. Also gallstones didn't seem to explain the distension. The sonographer who did the scan warned me not to be fobbed off with gallstones as the cause of my problems. It seems the doctor who ordered the scan had something of a reputation for doing this! This was at the local hospital. Since then I have been referred to a specialist GI unit at a London hospital who are much more interested in helping me. 

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Hi Jeannine. Can I ask what your parasites were and how they were tested for? Also how long was it after your trip to Peru that your problems started? Do you think the parasites are still the cause of your current pain?

My last exotic holiday was to Ecuador but that was way back in 2009, which seems too much of a gap to be a likely cause. What do you think? However I am seeing my consultant at the end of this month and will certainly ask about testing for parasites. 

Re oestrogen levels: I have been on HRT for almost 4 years so am thinking they should be ok?

I will certainly post if I can find out what is causing my problems. Thank you for your good wishes and I hope that you, too, are soon feeling better.

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Hi Pippa and thank you for your ideas. No, I haven't had a pelvic ultrasound but ovarian cysts don't seem to fit with my symptoms. My distension builds up during the day and then pretty much disappears overnight. 

Yes, IBS was mentioned early on but again my symptoms don't really fit as  my bowel movements have remained as regular as clockwork throughout the whole 2 years that this distension and discomfort have been occurring, regardless of what I eat. 

And yes, I have tried a gluten free diet as part of the low FODMAP diet but it made no difference. I have also avoided gassy vegetables and beans but, again, no difference. 

8

Hi Maz,

The parasite that I had was blastocystis hominis. I was in Perun in 2008 and had symptoms off and on for years. It wasnt until 2011 that I found out. I am assuming it was from the trip....I did get sick while down there, but there is a possibility I got them here as well. Either way Id rule it out. Im waiting for that test to come back now. The h pylori came in and it is neg. I too have the same thing..wake up and think ok stomach feel better....maybe its going away, then after my first meal it gets worse and then throughout the day bigger. Im am not over weight, 5'6 122lbs so it looks more obvious. I even wear baggy shirts  and sweatshirts so I dont have to try and pull it in because it hurts. We will figue this out!

Keep me posted. Hope today is a better day for you.

9

You said you are on HRT.  It may be possible you are reacting to the medication.  HRT is synthetic and not natural hormones, so it may not be suiting you.  Maybe try coming off it to see if your symptoms get better.

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Hi Pippa. I tried coming off HRT before Christmas. That was more to do with hoping that I might no longer need it for menopausal symptoms. I was off HRT for about 6 weeks before the night sweats drove me back onto it. In that time I noticed no difference in my distension or discomfort. 

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Hi again Jeannine and thank you for that information. It is definitely a subject to be pursued. I will let you know what I find out. 

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Have you had a CA 125 test?  I would still ask about having a pelvic ultrasound just to rule out the possibilty of cysts because they can cause distension.  It would be one less thing on your mind.  You could also google menopause experts who you can chat to online.  Sometimes weight gain/distension of the stomach can happen during the menopsuse.

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Hi Pippa. Yes, I had a CA 125 test early on and it was normal. I will mention pelvic ultrasound when I see my consultant later this month. Again thank you for all your ideas.

14

Hopefully you can get answers.

15

Parasite 3 day test is absolute must since blastocystis hominis or Entamoeba histolytica are a worldwide pest.

(you don't need to travel for it, get it in US, in Australia, everywhere, it's just more likely to get it, but you can get them anywhere)

PCR test would be the most sensitive for it (to not miss it, lab tests are never 100% sensitive, so better to go for the best, PCR and 3 day sample.)

All the best

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Hi Sanya and thank you. I wasn't aware of the potential parasite issue until this thread. I am now reading up on the various parasites and tests.

17

Interesting, isn't it. I have to admit, when my daughter tested neg repeatedly for those little parasites, we were almost disappointed not to know a reason for severe abdo symptoms and start treatment trials....

One can see it two ways, if something is found or not.

All the best!!!!

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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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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!

20

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.