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Ongoing tummy problems - help please!

Posted , 8 users are following.

search45
search45

For the last eight months I've been in hell with my stomach problems. 

I lurched from fearing I had a hernia, to an infection, to IBS and now it seems that I just have plain old IBS. I suffer from

bloating pain on my right lower side which makes me tummy swell out

feeling full after eating sometimes

rectal fullness

abdominal cramping twice a week

flatulance - sometimes

hard pellet stools ocassionally but otherwise go to the toilet everyday, sometimes twice (they've tried to tell me I have constipation but i go everyday)

daily nausea, this can happen an hour to two hours after eating and can sometimes cause me to need to have a bowel movement, as if something hasn't agreed with me perhaps. It's not diarrhea, just a small bowel movement. 

I can only really decsribe my ongoing battle as feeling like I'm constantly recovering from a stomach bug with flu you know, that general malaise and feeling very sluggish and sicky. 

Tests I've had done and outcomes:

Ultrasound - fine

x ray - showed fecal loading (e.g. stool hardening and loading in the large intestine)

endoscopy - fine

comprehensive stool test which showed a parasite called dientomeoba fragilis. 

What strikes me the most is this parasite they found but the doctors dont seem to worried about it yet I've read that it can cause all of my symptoms.

I've seen a dietitian, I tried the nhs diet for ibs which didn't seem to work as I had started feeling better and thought I would just recover, however the sickness followed by a bowel movement is a new thing and is making me think I must be reacting to food but I cannot seem to pinpoint it. I seem to be fine one day with something but then I could be reacting to it the next. No logic. 

I know someone will jump in and recommend a FODMAP diet but I just see this as something that appeases what's going on rather than addressing what went wrong. I just want to eat normal food like everyone else for goodness sake. 

Lastly, could I have sudden out of nowehere fructose malabsorption? Does anyone suffer with this? Can I get a test? It doesn't seem the NHS offer it.

I'm just really fed up now. And from being a healthy, active and normal human being able to digest anything and now to this has really messed with my head and my life. I see no way out other than a bland restrictive diet for the rest of my life and staying indoors and never socialising. 

Any advice will be a great help.

Thanks. 

0 likes, 8 replies

8 Replies

  • elizabeth142
    elizabeth142 search45

    Posted

    Hello search

    Mm not good. I have found as I have got older, my gut has become very sluggish!

    It can make me feel sick and gives me headache sometimes too.

    I find if I eat seeds and stuff like that from health food shop, it tends to sort my pains out.

    Maybe you have an intolerance to certain foods.

    It might be worth going to see a nutritionist.

    If you haven't thought of that idea..

    I hope you find some comfort soon.

    From liz😀

  • steve166
    steve166 search45

    Posted

    Hi

    I feel exactly the same as you . I have gone from a reasonably healthy 58 year old to a person who is struggling to live a normal life in 5 months . I have constant stomach problems with nausea , I am losing weight and never know what to eat  . I have had blood and stool tests (all ok) and seen consultants . I like you just want to be normal again and eat and drink as before . I am having to take time off work and feeling very depressed. This is just to let you know you are not alone in your plight.

    • search45
      search45 steve166

      Posted

      Hi Steve, thanks for responding. I can understand completely how you feel. I myself am 28 so I feel like I'm missing out on my youth. All of my friends can eat and drink to their hearts content and don't seem to have trouble yet I do which is very disheartening. Can I ask how your bowels have been? Have you suffered with constipation or diarrhea too? Have the doctors just slapped you with the IBS tag? I've been very resistant in accepting this diagnosis as it has very much come out of the blue. 
  • philippa61759
    philippa61759 search45

    Posted

    If a parasite was found, ask your doctor for treatment to get rid of it.  Tell him/her how unwell you are feeling.  There is no point in the doctor finding a parasite, telling you about it but then doing nothing.  If the doctor doesn't listen change your doctor or try going private.
    • search45
      search45 philippa61759

      Posted

      Hi, they won't treat it because they don't think the protazoan is a problem. They then carried out their own stool test (the stool test which showed the parasite was a very expensive private one) and the NHS stool test didn't find anything! Surprise, surprise. All they've done is poo poo (excuse the pun) the private stool test I paid for. I feel like all they're tryin g to do is prove me wrong and shove drugs down my throat. 
    • philippa61759
      philippa61759 search45

      Posted

      The next step is to change your doctor and insist on treatment privately even  if it is expensive.  The NHS appear to have failed you.  Only one NHS doctor recognised my symptoms and that was eighth time lucky.  One nurse left me in permanent pain from a blood test and another laughed at my complaint.  Both contributed to me getting IBS.
    • elizabeth142
      elizabeth142 search45

      Posted

      Why don't you go to a nutritionist or even to Holland and barrats health food store they are quite knowledgeable.

      Or go on some American websites where they always seem to have all the answers?

      All the best liz😀

  • sanya11314
    sanya11314 search45

    Posted

    I feel for you since we are battling similar (but stronger, permanent 24/7) symptoms and usual tests being negative....I am missing some routine test results to tick off the box in your list though. May I kindly list.

    (Highly overlooked is the 'autoimmune gastrointestine disease/dysmotility' btw, very frustrating since the field is huge.)

    But before thinking of that rare autoimmune thingy like AGID or systemic diseases like lupus, that can go onto gastrointestinal area, there are a few things to cross off the list of testing:

    - a sigmoid wall thickness smaller than 3mm does exclude even IBS! Don't let anyone tell you to be 'just' IBS, if you had no imaging measuring the sigmoid bowel wall thickness (sensitivity of 95%, if it was thicker than 3mm it doesn't mean its IBS, it can be anything, also IBD, but if it was less than 3mm...it is hardly ever even IBS). 

    CT and MRI enterography can look at all your bowel loops btw too for Crohn ect and other bowel diseases. (endoscopy doesn't reach the small bowel)

    - you are 'lucky' in a way knowing of a found parasite (we had 3 times testing, PCR, nothing). Parasites can cause no problems, but if you have problems AND a parasite, of course you need to tackle it to see, if this was the one and only reason.

    Apparently papaya seeds are a good thing to do first (taste really bad) before going on a triple antibiotic treatment (yes double, triple, quatro..., a mono Flagyl treatment will make you feel sick with very little chance of success. see eg http://www.cdd.com.au/pages/disease_info/parasites.html. If you go sick via an antibiotic treatment, take one, that is highly successful)

    - common diseases like coeliac can be easily tested (you had endoscopy, so they should have taken biopsies for coeliac disease and helicobacter test, biopsies being the gold standard), also in blood genetically for celiac or breath test for helicobacter is possible.

    Helicobacter pylori can make you feel really sick.

    - common malabsorbtions of fructose, lactose, sorbitol....can be tested with breath tests, but since you had endoscopy again a routine test should have been an enzyme test in biopsie, that is better and more accurate result. (dissaccharidase testing)

    - have the food passage time tested, gastric emptying study e.g. for gastroparesis (find a center, that does 4 hour real time values, not only 2 hours), it's more a symptom, but little adjustments like 'small meals every 2 hours, less fat, try mobility medication' could help then. (didn't do it for us though)

    Wishing you all the best and that you can tick through a few common tests first and try to get rid of the parasite (and re test there, where you got the positive result from)

    before going into the more 'less common' field from autoimmune (which is hard to find a doc who knows about neuronal antibodies, AGID etc) to other more rare diseases.

    Sometimes its just a passed and past virus infection that damages the intestine for 6-12 months and goes away on its own.

    Good luck!

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