Undiagnosed illness

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I am 19 years of age, i am currently being tested for chrons and sibo and have been tried on ibs treatment which doesnt work however i need to wait to see surgical and i was trying a low carb diet and nothing seems to be helping if anythibg things are getting worse and no painkillers are working. Any recomendations of what calms the pain down?

Thanks

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  • Posted

    Hey. I'm sorry to hear you're going through this, hopefully you'll have a diagnosis soon.

    I have crohns & I take 30/500 of cocodamol which helps with my stomach I also have morphine when needed. I'm on humira & prednisone for the crohns but you'd need a diagnosis for that. 

    You can buy cocodamol over the counter but only 8mg but to start that may help. Steer clear of the likes of Ibruprofen as that will make your stomach worse if it is crohns. 

    I also live (quite literally) with my hot water bottle on my tummy & find that helps. If you're suffering from diarrhoea then Imodium can help, my gastro said I could take up to 9 a day. 

    I hope that helps a bit, but in all honesty until you have a firm diagnosis there's not much else that's gonna help... 😞

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    • Posted

      Thankyou, im already taking the 30/500 cocodamol and that doesnt help neither does a hot water bottle. Do any certain foods help you?
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    • Posted

      I use lactose free milk & keep away from high fibre foods. I also stay away from anything spicy or greasy. On bad days I just drink fortisip drinks (which I get from my dr) & leave out food all together.  I have heard that things like lettuce can be lethal so maybe avoid that too. Stick to as plain as possible & maybe chase up the appointment with the gastro... 

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    • Posted

      Okay thanks im currently trying a low fibre diet and i have a surgical appointment next week. Im just hoping they can do something. Did it take you long for a diagnosis?
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    • Posted

      It took them 3 years for initial diagnosis then on my second flare it took them 9 months to realise I was flaring again.. It's a slippery sucker to catch so hopefully they find out quickly for u 😔

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  • Posted

    Hi

    I'm sorry you are going through this and totally understand what it feels like, I hope you get some answers soon as to the cause. I have had functional gut disorder for many years but when my symptoms got worse and I became quite unwell and severely exhausted it was discovered I'd developed iron deficiency anaemia and low b12 levels. At that point the drs did more investigations and I was waiting to be seen by a different gastroenterologist who did different and detailed tests. The consultant did a stool test called faecal calprotectin have you had that? Its a test for inflammation and is one of the newer easier ways to check for inflammatory bowel disease such as crohn's. I also had small bowel mri which showed crohn's in the terminal ileum where b12 is absorbed which is why my levels were low.

    I take a good probiotic with food called quest mega 8 biotix its a bit expensive but worth it as it helps me. I am mostly dairyfree and limit wheat as much as possible but there are lots of free online recipes if it is ibs if you look up fodmap a lot of people find it helps. I think we all as individuals will find certain foods make us worse. I started off with a trial of steroids called budesonide which help me quite a bit. I also take buscopan 8 day and colofac 3 daily before food. Painrelief varies from solpadol (30/500 cocodamol) tramadol or oramorph on a bad day but definitely no anti inflammatory like asprin or inbuprofen. Smoking is also very bad for the gut I used to smoke many years ago but stopped 11 yrs ago.

    I hope I've helped a bit and hope you get a diagnosis soon.

    Take care

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