Awaiting diagnosis - new here

I'm 38 and have been suffering for almost 2 years with mainly abnormal bowel problems and left sided pain which started about 3 months after my gallbladder was removed, this was after I was hospitalised with pancreatitis. I've had 2 abnormal fecal calprotectin tests my first one was 286, this was followed by a colonoscopy where a polyp was removed from my small intestine and random biopsies taken. All biopsies were normal so I am now due to have a CT scan and from what I understand if this shows inflammation they are going to diagnose me with Crohn's. My cousin on my dad's side was diagnosed with Crohn's a few years back and whilst she never had a diagnosis I suspect my dad's mum may have had it as towards the end of her life she had endless gastro and bowel issues and had lost so much weight. I seem to vary between being bloated and blocked up or my bowel going crazy and everything i eat going through me. I both gain and lose weight easily. I suffer from fatigue and often have pain in my knee joints as well as some days waking up with aching legs as if I've ran a marathon but in fact I've done nothing different. I also suffer with a dry niggly throat which seems to always have ulcers on it but whenever I go to the doctors they just say it's caused by reflux. I'm currently taking methylcellulose I started on 2 twice a day and am now taking 6 but they don't seem to help. I feel like I just wee out all the water I take with them and they seem to just vanish inside me. My bowel never completely empties at the moment and I'm going 6-10 times a day which is annoying and it drains me as well as getting me down. I occasionally take omeprazole for reflux which was prescribed following a gastroscopy which showed mild antral gastritis. I just wondered if anyone had similar symptoms pre-diagnosis and could give me an idea of whether it will end up being Crohns or if they are going to say IBS and leave me to get on with it.

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4 Replies

  • Omeprazol works better as you build it up inside. Therefore,it should be taken daily for about a week to feel the best effects. It is like building a barrier between the gut and the osophogus (excuse the spelling). Whether you are diagnosed with IBS or IBD,you should not be left to get on with it.

    The GI team at the hospital where you are being tested should have compassion (as well as an interest in) the results of the tests and the possibility of a specific diagnosis.

    If they don't then please remember St Marks at Northwick Park, is not only the world centre of excellence for diseases of the colon and fistulae of and cancer of the bowel. My favourite term is Tops for Bottoms . They are based in Harrow,(zNW London). It is an NHS hospital and as the slogan says TOPS FOR BOTTOMS. You are legally entitled to a second opinion or referral to an NHS doctor of your choice. Good luck with your tests and results.

  • Hi, can I ask what area of the country you live in? It's just I think you need to see a different doctor!!

  • I live in Nottinghamshire.

  • Hi Jennywise, this may sound a little odd but bear with me. I had moderate UC, it never felt like that, have you ever heard or read about a silicon rich mineral water? Volvic, S. Pellegrino, Fiji, Brecon Carreg, there are more. I was having troubles very similar to yours in the never quite emptying the bowels. Awful feeling like stuff was stuck?

    So I'd read about Camelford Water Incident, too much clearing agent added to a private supply. Look up 'Village of the Dammed' Daily Mail. Lead me to a professor C Exley who studies the metal, Aluminium. He studied how to reduce it from the body by having people drink 1 litre/day silicon rich water.

    First bottle or second, first I think, it started to work on me, and I thought I must use he lavatory, fairly important but never so important as the disastrous Asacol/Salofalk (any melasalzine/mine/5ASA), I should have noted it better, but the water gave me very soft complete bowel evacuation. So I thought that feels better, carried on drinking the water, and found that my stool started to be waterlogged.

    I thought I'm partly better, the silicon rich water has helped, but there's something still missing. I had noticed at the local health shop, silica capsules (Lambert's) for sale before and had never thought anything about it. Seeing it again I thought must be same stuff as the water, but it'll have a different action further down my intestines. Tried one with the water (I won't give that up!), it started me forming more solid stool, you know that sometimes there's mucus and nothing else, that was me, but this time I had normal mucus surrounding the more solid stool, a thin layer that I'd forgotten about.

    There, that's my little tale of how I figured it out. Before I go what do you think of the taste of tap/mains water? Is it bitter or does it taste too metallic? This water should taste of nothing, do you ever have that feeling of not being properly thirst quenched? If like I think it should help, please tell others in this group. I use the water to make my coffees, Lattés, Espressos, etc. And always have a couple of mugfuls last thing before bed. Hope that it helps you! Good luck,


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