Getting nowhere with my bowel problem, has anyone got anything similar to this?

Hi, been reading this forum now for about 4 months on suggestion by my Gastro, but I have not come across anything like I have on here. I will give you a run down of my issues.

12 years ago I had a chronic case of H.Pylori that was misdiagnosed for nearly 4 months as just a "stomach bug" . I didn't have constipation, nor did I have diahorrea I just kept going to the toilet (fully formed normal faeces) up to 15 times a day and chronic vomiting and swelling in my upper abdomen, I was also piling on weight like nobodies business. I was referred to hospital where I was given a colonoscopy and endoscopy the results showed nothing significant but I did have rips and tears in my aesophagus, a hiatus hernia and a small patch of diseased intestine to to the H.Pylori. I was under doctors orders for nearly 4 years taking several types of medication until it slowed right down to being managable, but not cured as such.

I had an 18 month period of wellness (being able to manage it that is) lost the 5 stone I'd put on and began to get my life back on track. Then one night in 2008 I was taken unwell... and the problems I had before all started flooding back again. I tested negative for H.Pylori this time and my G.P put me back on the medication I was previously on with a view to being sent back to the hospital, unfortunately that G.P left the practice and I was lumbered with another G.P who couldn't care less and it ended up in me making a complaint about her to get me a referral to hospital after nearly a year of trying to get her to do that for me and me getting sicker before her eyes and again piling on the weight for no apparent reason.

I saw a Gastro who at first sympathised with my predicament, we went through everything step by step and what could have triggered the issue and said I was under the "IBS umbrella" but on a very exaggerated scale. I was sent to a top clinical psychologist to see if that would help, I was under her for nearly 2 years, but it got to the point where she couldn't do anything else for me as nothing was changing and discharged me. So back to the Gastro I went and was asked to try the FODMAPS diet with the dietician at the hospital which unfortunately had no effect on me whatsoever after trying it for 8 weeks, so I was discharged from her too.

Again back to Gastro who said there was a treatment that was in its early stages called a faecal transplant and he would consider taking me on to do it as long I was happy to be a test case for the hospital, of course I agreed and he said he would need to talk to the psychologist to see if I was ready for it and would probably have to go for the colon/endocopy again as routine. 6 months later I go back to him and the idea was completely dismissed by him, told me to join the IBS network and this forum and lose weight! (this time I have put on 9 stone!)

I am going back to him on Tuesday for my 6 month review and I am terrified he is just going to brush me off again, my current G.P has tried to contact him twice in the last 6 months as he is concerned about the infection levels in my blood tests as they have been steadily rising over the last 4 years for no apparent reason.... Gastro has not got back to him at all.

So in summary, these are my issues.

Fully formed faeces up to 15 times on a bad day, 5 times average.

No constipation, no diahorrea, no pain, no urgency.

Severe swelling of upper abdomen to the point it feels like I am being squeezed to death.

Vomiting (or regurgitating) food and stomach acid, I have lost all the upper left hand side teeth due to the acid killing and rotting teeth, I have also lost two more on either lower side

Tremendous weight gain.

Fodmaps didn't work:

I am NOT allergic to Gluten, Diary, Lactose, Sucrose, Wheat (been blood, urine and stool tested) I also came back as negative for Celiac.

I have no trigger foods, sometimes a glass of water makes me balloon.

Other medical issues that have been brought on by weight gain and deficiencies caused by my problem.

Thanks for reading and if anyone has any suggestions, they would be gratefully received and also anything I can ask the Gastro that may be of help.

Cheers x

12 Replies

oldestnewest
  • Sorry to hear about your immense problems, sometimes it feels like you are the only one in

    The world, I don't have anything similar to you but did suffer other medical problems which got brushed away....a routine blood test showed I had a para thyroid problem, this took over a year, but my major problems were then put on back burner and I had to start all over again...I do hope something positive turns up for you.

  • I'm at a bit of a loss here as I've never read anything like this with regard to IBS. Whilst it sounds as if you've had a lot of tests at various times, do you know whether they included one for SIBO (small intestine bacterial overgrowth) - it's a breath test? Have you had a candida (yeast overgrowth) test?

  • I feel when you return for your appointment on Tuesday, you need to be firm (not rude) but make them understand that your life is on hold and it is not because you don't stop eating, but that something is going on in your body that needs sorting. If you have piled on the weight people always assume its because you are gluttonous.

    You don't mention if you are male or female. If you are female have you considered other things like polycistic overy or endemetriosis? I know the later can grow in all sorts of funny places and can affect more than the womb. The suggestion about candida is also a good one, although this is quite easily remedied with an enema or colonic irrigation.

    Have you had 'alternative' tests, ie. my son had a hair test at one of these 'chinese herbalist' places and it came back as lack of digestive enzyme, it may be you have something similar. He was often sick after meals and until recently probiotic yogherts worked for him, but it now seems to be getting worse.

    I really do feel for you and hope you can,at least,get this under control.

  • ask to be referred to another hospital

  • Hi and thanks for your replies so far.

    @ Bernadette, thanks, my blood tests are relatively normal barring the infection level one, Vit D (deficiency now on calcium tabs) Foliate was extremely low (now back on track thanks to a 2 month blast of high dose folic acid) and my blood cells are large but not enough blood in them? but that could have been due to the lack of the above,

    @paganmoon: I've had candida which is fine, but not a SIBO seems to be the only test that I've seen on here that I haven't had done, will mention that one. x

    @motherofsufferer: I am a 38yr old female, I have had my ovaries checked and they are fine, it was one of my concerns when my middle GP refused to take it seriously as the symptoms are the same, maybe that route can be looked at again. x

    @3741 lol, well if anything doesn't turn up on Tuesday, it may be worth asking my G.P if that is an option, just dread going through the whole rigmarole for the 3rd time! x

  • I have an idea...can you ask to see an immunologist??? I think it sounds like your body is attacking itself..I have a condition called angioneurotic odema, the swelling you describe sounds very familiar and the symptoms of gasto angioedema mimic IBS or at their worst appendicitis. Its not always easy to find a sympathetic GP Ive been in A+E several times as unfortunately suffer a lot of pain and I just get blank looks and fobbed off with oramorph when i mention angioedema as to them it means swelling of the face or tongue but it can and does affect internal organs so much that you can swell and put on lots of weight for no obvious reason..

    i feel really sorry for you as sounds like you've been through the mill and getting nowhere fast in an explanation as to why you have these symptoms. I think its worth checking out your immune system though even to rule it out of the equation. Best of luck. xx

  • @sickandsore: Thanks for this I did a bit of research on this last night and a lot of my symptoms do match up and I will suggest it to the Gastro, if he is unresponsive to it then I will ask G.P. x

    I will let you know how I get on today!

  • Good luck today at the doctors. Was thinking whether it may be a good idea for you to start a food diary for a bit also, as although you don't have a trigger as such, certain foods may be causing some excess gas. Water bloats me also if it is cold, so can only drink it hot. I was treated last year for a Haiatus hernia and one thing that helped me was placing two bricks under the feet of the bed (headboard end) as this helps prevent the acid travelling back up to the throat while you sleep. At the moment I am not eating solid food apart from mash potato and ensure prescription food drink, it's helping slightly but it is something that is only short term. I wish you all the best for today.

  • Thanks again for all your replies.

    I'm just back from the Gastro who has discharged me, his reasoning "it's IBS plain and simple" would not entertain any of the ideas put forward by you kind people and even baulked at Ovarian Cancer saying "you wouldn't be sat here if you had that!"

    When asked why he didn't reply to my doctor about the raised infection levels he asked me do I have any symptoms of infection????!!!! and then dismissed that also.

    New reason behind not having a faecal transplant, the microbiologist he was going to work with on the scheme has left.

    Me and my mum came out of there pretty shocked and well disappointed to have been basically told to go away and deal with it.

    Next stop G.P with your suggestions from here and anything else you guys come up with x

  • @ladycx I've kept a food diary a few times in these last 12 years and I can't pinpoint anything specific, for example one day it could be say a salad, next time I eat a salad I would be fine. I could well have another hernia but as another colon/endoscopy is out of the question, who knows!

  • Hi there, I'm a bit late to this discussion, but had a few thoughts.

    Poop is mostly dead bacteria, and you said that you're pooping copiously... whch suggests to me that there is waaay to much bacteria in your colon. Dysbiosis in other words.

    Whether you have symptoms would depend on how well you feed those bacteria... it's not a food sensitivity, so it won't be down to any one particular food, but down to the cumulative effects of various foods that the bacteria in your digestive system happen to like. And that's why you can't pin down any one particular food as a trigger.

    I think most bacteria feed on carbohydrates... soluble fiber is a kind of complex carbohydrte that bacteria in the colon absolutely love. Have you looked at the specific carbohydrate diet (SCD)?

    breakingtheviciouscycle.info/

    The logic behind it is that the enzymes that breakdown disaccharides and starches aren't being produced, so the carbs aren't being absorbed and instead they become food for bacteria in the colon. I think this also causes weight gain, because when there's carb always hanging around in the digestive system, your body never gets any down time from digesting and so it never goes into fat burning mode.

    By cutting out the disaccharides and starches from your diet, it removes the food source, so the numbers of bacteria in the colon decline, which reduces symptoms, and allows your digestive system to function more normally - and extract more nutients from food, which will restore enzyme activity. Over time the dysbiosis will be reduced, so that you can start to eat more normally again.

    It's a restrictive diet though. I tried it for a week or so and weight fell off me, so I decided that it wasn't right for me at that time. However, there's lots of anedotal stuff from people who say that it worked for them. Since you've tried so much else, I thought you might be interested.

  • Wow. Not heard of symptoms like that before! Feel for you.

    Have you tried alternatives therapies? Nutritionist? Acupuncture/ traditional Chinese medicine? A combination of these two therapies could help you to get to the source of the problems.

    Fingers cross for you:-)

You may also like...