Undiagnosed condition

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Hi there,

I was looking for some advice i havr been unwell for 10months now with abdominal pain, joint pain, extreme fatigue, blood in stools, headaches and nausea, burning and numbing in whole body. The doctors are still investigating and think it may be chrons however may stool sample is okay. Any thoughts if it still could be that will the results coming back clear?

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16 Replies

  • Posted

    Hi there

    Sounds like you're having a torrid time of it. Those symptoms could well be Crohns but until a definitive diagnoscis is made you may not know for certain.

    The thing is you do HAVE those physical symptoms and they need adressing urgently whether it turns out to be Crohns or not.

    I know of many people where their GP or specialist has faffed about trying to get a definitive diagnoscis but all the while the patient is deteriorating and has acute symptoms.

    Keep pressure on your specialist to do further investigations e.g. sigmoidoscopy or colonoscopy etc irrespective of the reading in your stools. My stool protein levels never went up at all and it turned out I'd had Crohns for well over 2 years. The colonoscopy proved decisive.

    I wish you well.

    Pete

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    • Posted

      Thanks so much for your advice its that some doctors arent bothering now and i am getting worse everyday.
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  • Posted

    Hey hon. I'll reply even though I've said heaps on PM lol.. if the stool sample was a fecal calprotectin & it's come back normal then the chance of you having active IBD is slim. The next step would be a colonoscopy to check your colon as you're bleeding, have you been taking pain meds like ibruprofen? This can cause bleeding & cause havoc with your insides. 

    Have they talked about fibromyalgia? I have this (on top of everything else) and a lot of your symptoms you've mentioned sound like fibro. I really hope they get to the bottom of this for you, and like I've said, keep fighting for a diagnosis... ??

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    • Posted

      Thanks so much again im am taking pain meds but in taking cocodamol? I will do its just some doctors arent bothering aas much anymore.
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  • Posted

    Hi.

    I'm sorry you are going through such a tough time with your health. Have you had any blood tests recently? I wasnt taken seriously by one consultant despite but was later found to have iron deficiency anaemia and low b12 which indicated to my current consultant that I had crohn's in the terminal ileum where b12 is absorbed. I then had a lot of other tests including repeat colonoscopy etc... low b12 can make you feel very unwell including fatigue and tingling/ burning pains in hands and feet so its worth getting the level checked incase you are not absorbing it very well.

    I take a good probiotic and am careful with my diet and try to not eat wheat and am mostly dairyfree. There are lots of things that can help now although its often hard to get a diagnosis as symptoms often overlap but my advice is take someone with you to dr appointments as you are less likely to be fobbed off and they can voice their concerns about you if it appears that this is happening again, make sure they have listened to you and know how badly you are affected by your symptoms.

    I hope this helps a bit hun, let us know...

    Take care x

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    • Posted

      Hi there,

      Thanks so much, yeah i have blood tests but im not sure what types of blood tests. I am on a bland diet but it doesnt seem to be helping and ive lost a stone in a month.

      Again thanks so much for your help x

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  • Posted

    Hi,

    I think you need to be reviewed by your gp hun. Are you on any other medication to help such as buscopan mebeverine (colofac) or immodium? If you are on the 30/500 cocodamol the codeine in those can often reduce diarrhoea as codeine causes constipation in lots of people...I've been on it for a long time though and it doesn't stop my diarrhoea. I take buscopan 8 daily colofac 3 daily before meals and the probiotic 1 or 2 a day after food that combination usually keeps me at an okish level but I had a year of steroids to get under control and just had a flareup so was back on the steroids for a couple of weeks. I also cannot take iron or many vitamins anymore so get iron infusions in the day unit about twice a year and have b12 injections.

    I hope the gp has referred you to a gastroenterologist? Having said that the wait can be lengthy to see them but if you are already under the care of a consultant I would ask your gp to review your blood tests pain level and weight loss and get you seen quicker or ring the secretary to see what the plan is. I think you need to push for a colonoscopy and some medication. There is also liquid drinks the gp can give you to help with nutrition whilst you are going through this tough time.

    I hope you feel better soon.

    Stay strong x

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    • Posted

      Thanks so much, i am waiting on a colonsoscopy and i see surgical this week so hopeully i get some answers i have tried buscopan and that doesnt help im on the strongest cocodamol and that doesnt help either. Can u suggest anything that helps the pain?

      Hope your feeling okay

      Thanks again. X

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    • Posted

      Ask for oramorph or butrans patches for pain relief if cocodamol isn't working xx 

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    • Posted

      Oramorph is liquid morphine & prescription only & butrans patches are morphine patches again prescription only xx 

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    • Posted

      Okay thats wierd as when i had my operation in february i was told id only be released if i didnt have morphine? Do i just ask for them x
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    • Posted

      Hi em,

      I'm sorry you are in a lot of pain hun I totally get how it feels when it isn't managed and its horrible. The best way to take your pain relief is on a regular basis to keep the level of pain from peaking. I don't mean take painkillers longterm at max dose but just while your going through this stage of worse pain. Then I would see your dr and explain how the pain is not currently managed and that although it may not be possible to be completely painfree that you would like (or need) to try something more. They used to give tramadol but I think there is more awareness of prescribing that as very short term nowadays so you may well be given oramorph. As Hollaka said its a liquid and you can start on a small dose. I have it but use a small syringe as I find it easier and I take the lowest dose that helps me. It causes less nausea than tramadol I would ask if you can try it if your dr doesn't offer it. Oramorph although its liquid morphine is different to having intravenous morphine in hospital as you are nil by mouth for surgery and have the anaesthetic in your system so for safety anyone who has morphine during an operation or in the recovery unit will be kept on the ward overnight for observation.

      Definitely stay well away from ibuprofen or aspirin or anything with those in especially cold cough remedies.

      I found that I became unable to take any oral iron not even spatone which I used to be fine with. I also cannot take any vitamins or antibiotics thankfully I'm okay with the probiotics I have the vegetable capsules as for a while I thought it was the coating of the capsules on vitamins that I was having problems with. I wouldn't be without those now don't know if you've thought about trying them?

      I was also told my biopsies done during a previous colonoscopy showed possible microscopic colitis so there are several possible diagnosis but the steroids I'm on treat both that as well as crohn's.

      I hope your appointment goes well and you get some answers and try to take someone with you if you can.

      Hope you feel better soon too xx

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    • Posted

      Aw okay, i tried tramadol but hyperventilated whilst i was on it. Ive not tried vegetable capsules but ill have a look and maybe give it a go. And that would make sense. Thanks so much x
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