Please help! Confusion over diagnosis

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Hi everyone

I would really like some advice please unfortunately I have been suffering with stomach problems for years and it has been awful the past year I suffer from the following symptoms

• very bad stomach pain after I eat anything

• diarrea after eating almost anything

• nausea

• mucus

• some blood in stool

• very poor appetite

• stomach cramps and discomfort every day

• weight loss from avoiding eating but not substantial amounts

• bad pain in lower right not sure if connected

• painful and clicking joints

• very weak

• fatigue

• noisy tummy after eating

Now this is the confusion I have had some tests that come back positive and some negative for crohns

This is the following tests and results

• feceal calprotectin one test was 178 and positive

• one feceal calprotectin was normal

• had my appendix removed in October was told it was full of patches of inflammation called granulomas which I have been told can been from crohns

• very low folate levels

• very low vitamin d levels

• normal colonoscopy a year ago

• normal capsule test a year ago

• normal MRI scan

I'm so frustrated as I saw another consultant on Monday who said he thinks it could be very bad ibs I'm suffering with but it could be crohns but it's hard to tell with some positive and some negative results

I've had to give another two stool samples in today he's testing the calprotectin levels again and feceal electase not sure what those are

He's basically said he's now treating me as I have ibs unless these stool samples come back abnormal

I literally haven't eaten a meal for a year because of the pain I suffer with I avoid eating so he's referred me to a dietician and cognitive therapy and he's told me to cut lactose out for four weeks then gluten for four weeks and then to try priobiotics for four weeks to see if any of these things help to be honest I don't think it will because literally all I eat in a day is two rich tea biscuits, some mints and two eggs in the evening with water to drink that's it literally.

I just feel lost I feel like I'm being labelled with ibs because they don't know and he seemed to make out like it was in my head.

Also not to be disgusting but the samples I handed in today when I looked at them to scoop some in the sample bottles I noticed it was full of stringy white mucus and patches of blood throughout it I made sure these are in the samples

I would be grateful for any advice or if anyone has been through a similar thing please? Does this sound more like Crohns I'm just worried it's being missed! I just want to be able to lead a normal life and not be constantly suffering 😢 .

I also have other diagnosed conditions as follows which doesn't help lol

• Postural tachycardia syndrome

• chronic fatigue syndrome

• underactive thyroid

• PCOS

Thank you xx

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9 Replies

  • Posted

    HIya,

    I was diagnosed with Crohns fairly quickly after developing symptoms. My brother on the other hand had been sick on and of for about 10 years before he was diagnosed with Crohns. They only label it as Crohns if inflammation shows up in the terminal ileum, where the large and small intestine join. For me it was there for day one but my brothers only appeared in that specific area recently.

    I do remember trying to cut things out and it made no difference. How this last year I have gone lactose free and it has helped with some symptoms, but I developed the intolerance as a result Of The Crohns. The inflammation didn't change. I recently had the terminal ileum removed.

    I think try what the doctor says, it will strengthen your case when You See them again. Also if by some miracle your health improves, not having Crohns could only be a good thing

    Sorry, not sure anything I've said will help.

    Hasna

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  • Posted

    Hi Laureate20,

    I have Crohn's disease just a few years ago which I discovered through colonoscopy.

    Before that I suffered IBS which is similar symptoms like yours. I went to emergency room many time if I had eaten something unhygenic or allergy.

    The best thing is to avoid stress which trigger of those symptoms. You may have Crohn in mild form. I had it in mild form. If it is Crohn disease, it will make to go toilet during the night near morning or midnight. That what happen to me. My Crohn is in remission thanks to yogurt and probiotic which I mix with it. I used to stay away from process food which is biscuit and bread which help. I have small meal and avoid raw vege and fruit for a few months. I had yogurt each meal before eating for an hour. It also good if you stop coffee or wine and drink ginger tea or eat ginger pickle the ones like in Japanese restaurant have. I did not take any med even the specialist told me for it gets worse.

    I hope it will help you. I also think you need multivitamine to back up your health or once you become deteriotate and it will lead to other illness.

    All the best,

     

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  • Posted

    Sorry to hear you're having a rough time of it.

    Unfortunately it's reasonably common for diagnosis to take persistence and time. I had what was diagnosed as IBS that 4 years later was diagnosed as Crohns. The symptoms were horrible.

    Raised calprotectin can mean infection or Crohns. There's no Crohns test as such. Instead they look for functional symptoms/markers and work it into a diagnosis.

    Around when you became ill - had you travelled or had food poisoning? Could be an area to explore.

    My challenge was where they found a few ulcers but my consultant said it probably wasn't Crohns but he couldn't rule it out. He believed six or seven ulcers or more is Crohns territory, or the more obvious symptoms such as fistulas. This also depends on how far they get the colonoscopy. Terminal ileum is a common place for Crohns to be seen, but not the only place. It can be hard to reach. A capsule endoscopy would be worth suggesting.

    If it does turn out to be IBS, I'd highly recommend the low FODMAP diet (I have IBS and Crohns, fairly common).

    Good luck x

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  • Posted

    Thanks everyone for your replies and kind comments 😊😊 no I didn't have any food posionig or anything just my symptoms seemed to get very bad May last year and have worsened ever since 😐

    All very helpful well the samples have gone off so now have to wait and see what happens

    I just want to know if it's ibs or crohns once and for all and then at least I know what sort of diet to try and have even though it's a struggle to eat anything at the mo 😐

    Thanks again everyone and I wish you all the very best xxx

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    • Posted

      It'll definitely be more positive once you know. Don't go easy on your consultant - you need to have confidence in their diagnosis - leave no stone unturned and you'll get there soon x

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  • Posted

    Hi, I had crohn's for 8 years. They are the syptoms for crohn's, i suggest you get a second opinion from another doctor and more tests.

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  • Posted

    Sounds like crohns. Granulomas is a clear indication I would of thought. U don't usually have Blood in stools with IBS and u don't have inflammation with IBS. The calproctecin would also be normal on every occasion. Maybe it was normal wen u were in remission. Try doing a stool sample wen u have symptoms. Its not easy to diagnose crohns but I do know that IBS don't cause bleeding. The pain with crohns is also usually on the lower right side of abdominal. I've heard that some people are treated for crohns without a diagnosis of crohns. Maybe ask your doctor about treating you as a crohns patient and see if the medication works?

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    • Posted

      Thanks Kelly wow you literally sound like me and it's a relief lol I've said exactly the same thing to me it seems more likely I have crohns with all my symptoms and I'm constantly suffering with low right sided pain in my abdomen.

      The doctors just won't have it as I've had normal scopes last year they are admant it's unlikely I have crohns but then they say oh but it could it could be 🙈 I'm with you I've had granulomas positive calprotectin the symptoms of crohns blood and mucus in stools so it makes me feel frustrated when they start mentioning ibs and that I should see a cognitive therapist like I'm making it all up.

      The sample I handed in seemed to be quite good with blood and mucus in it sorry to much info I know so I'm hoping it will come back with what they need.

      It sounds like I want crohns which believe me I don't but like you said if the medication will help I would be ever so grateful I'm just so desperate to live a normal life and to stop constantly suffering so want to have whatever I can to help.

      Thank you for your comment and for your understanding my names also Kelly lol.

      I wish you all best xx

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    • Posted

      There's also other condition's that mimic crohns like infection that can cause inflammation which can last several months. I would keep pushing until u get a proper diagnosis. I'm having an MRI and If that comes back normal he's also giving me another colonoscopy. Maybe u need another colonoscopy . try cutting out gluten and see how u feel. Its made a huge difference with me. You could have celiac disease. My coloproctecin levels were greater than 6000 and they think its infection and that was in December and I still had inflammation in Feb wen I did colonoscopy. I've also redone my stool sample and haven't heard anything so its probably normal, I need to call my doctor. It is possible to get a normal result if your in remission. All the best x

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