No one knows what's wrong with me? What else do I do?

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Hi, this is my first time posting on this forum. I'm a 17 year old female and I have been suffering with me stomach since I was smaller. I haven't got a diagnosis of anything yet. Basically over the last 3 years my stomach has got worse. Every few months I get these 'flare ups' where I get very intense stomach pains which lasts anywhere between a week or a month. Days before I get one of these flare ups I pass bloody mucus after a stool which is my warning sign that I am going to get a flare up. The pain is so intense I feel dizzy and almost faint. It makes me completely bedbound and nothing helps with the pain other than really strong co-codamol. Sometimes during these flare ups I can have up to 22 loose stools within 24 hours however they are not diarrhoea. I also get bad pain in my joints and get bad ulcers in my mouth. I have been to doctors and consultants and still undergoing investigations. I have a had blood tests, upper Endoscopy, ultrasound and colonoscopy. All of these tests basically didn't show anything. Recently a blood test has shown I am anemic but have no explanation as to why I am.  My consultant is treating me for IBS even though he has said that he actually doesn't know what's wrong with me. I have tried the low FODMAP Diet and it didn't work and I have tried different anti- spasmodic tablets which didn't help either. I feel like I have Crohns because of my symptoms but nothing is showing up on the tests. Could Crohns not always show up on tests. Or can you actually get these symptoms with ibs? Thankyou for reading.

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  • Posted

    You wouldn’t get Haematochezia with IBS. Is the blood mixed in with the stool or separate?

    Once a flare begin do you continue to notice blood in your stools?

    Anaemia - Do you have heavy periods? - Are your stools very pale (cream color)?

    IBS can cause horrendous abdominal cramps as bad as those experienced with IBD. 

    Have you had stool tests - Stool Culture and Foecal Calprotectin?

    Do you know whether your inflammatory markers (CRP and ESR) are raised? 

    The only further test you could have is a small bowel MRI (to look at the part of the gut which OGD and Colonoscopy can’t get to).

     

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  • Posted

    Hi thankyou for replying, a couple of days before a flare up I notice bloody mucus when I wipe also dark stools that's look a bit bloody. During a flare it tends to die down. When I had the blood test for anemia I hadn't had a period in weeks and I don't get heavy periods. My stools sometimes are pale in colour but that is quite rare but I look very pale and unwell most of the time. I haven't had a stool test to test for those things on for H Pylori. I am due to have a MRI scan of the small intestine soon but I was wondering would it show up if I wasn't in a flare? I feel like my symptoms don't match ibs, especially as I'm 17 and it leaves me bedbound for weeks. 

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  • Posted

    Hi Charlotte

    I'm so sorry you are suffering like this and have yet to get any answers as to the cause. I, like many others here, totally understand how it feels when you have symptoms and pain and no clear diagnosis but they will get there for you hang on in there. I just hope you have a good consultant and understanding gp as this is very important with any longterm health issue although at least your consultant was honest when he said he is treating you for IBS at the moment. Your story sounds similar to mine in parts although many bowel conditions do have overlapping symptoms. It can be tricky to work out what is triggering the flareups try keeping a diary of when they happen and what you were eating in the days before.

    Are you on any medication that could be making your symptoms worse? I have had bowel problems for many yrs starting as a young girl like yourself...mine was partially linked to a gynaecological condition called endometriosis which can cause ibs type symptoms and severe pain. I also had some rectal bleeding which often happened before or during a period and was getting worse diarrhoea during my period but that can be caused by hormone changes and/ or taking pain relief with anti inflammatories in them. Please stay away from painkillers in the nsaid group as anything with ibuprofen naproxen voltarol etc in them can make bowel problems worse. In my late 20's and early 30's I took lots of ibuprofen as my endometriosis was severe and I couldn't get to work or stay there without them wish I hadn't now.

    In 2008 I was admitted to hospital with severe diarrhoea and vomiting and was dehydrated. I had intavenous fluids and when they did another colonoscopy there was a question mark over the biopsies as they thought I had/have a type of microscopic colitis...my consultant has said it is possible but I've since been found to have crohn's in the terminal ileum which was only investigated again when my blood tests showed iron deficiency anaemia and low b12 levels.

    I have altered my diet and am mostly dairyfree and wheatfree wherever possible although I do eat some wheat. I take a good probiotic called quest mega 8 biotix which definitely helps me a lot. I take it twice a day with food.

    I also take Mebeverine 3 day and buscopan 8 a day. I have steroids called budesonide which I had a trial of initially then had them for a year and now take them during a flareup. I have also had polyps removed.

    I would ask if its possible to have microscopic colitis ruled out or tested for when you next have a colonoscopy. If it is crohn's there is a lot more support and info around now it seems.

    I hope you get some answers soon but don't lose heart you will find out what helps you.

    Hope I've helped a bit...

    Take care

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    • Posted

      Hi Rose, thankyou so much for replying it really does mean a lot. Do you have IBS or Crohs or Colitis? If so how many tests did you have before you got a concrete diagnosis? Also if you had colonoscopys before you were diagnosed did it come back clear a few times before you were diagnosed? My consultant wasn't very good when I first started seeing him as he kept on trying to palm me off with IBS without investigating, however now he seem really good with me but he told me he actually doesn't know what is wrong with me. I am worried he is just going to eventually tell me there is nothing more he can do. I have had biopsies taken for microscopic Colitis and it came back negative. I have thought about maybe having endometriosis as I have a cyst on my ovary which hasn't gone and my pain sometimes moves to the lower right side. How long did it take for you to get a diagnosis I just don't know how to live like this and not know the cause. Thankyou again for replying 

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  • Posted

    Hi Charlotte,

    Sorry to hear your going through this.  I've recently seen my consultant who believes I don't have crohns but I had an infection.  He said he didn't want to miss anything if it was crohns so he's decided to give me a calprotecin test every 6 months for a yr or so as a colonoscopy won't show anything unless I have active inflammation.  An MRI could also be normal if in remission.  I would have a calprotecin wen you have symptoms and if its high then they should investigate further.  In regards to the blood having rectum bleeding could be piles or a teae unless the blood is mixed in the the stools

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  • Posted

    Hi Charlotte I totally understand your pain. I’m 17 and I have been suffering from bowel problems for a year and when it first began I was told I had IBS but then after a few stool samples I was told that I had camphlorbacter and h.pylori so I was put on antibiotics to cure that. After I was treated for the bacteria and it cleared my symptoms came back. I have abdominal pain, gas, bloating, diarrhoea,  the feeling of not completely emptying my bowels, very loud abdominal noises, hunger pains and growls, indigestion, mucus and sometimes blood in my stool. I was given buscopan, peppermint oil, medbeverine and I bought loads of over the counter medications, non of which worked. When I eat I have to empty my bowels straight away or around 30mins after. I currently take Imodium which makes my stools a bit more firm but still very loose and codine since it the only thing that works for the pain. The doctors don’t know what’s wrong with me and I’ve had various blood tests done and they didn’t show anything except that I was anaemic,I’m due to have and endoscope and colonscope in a few weeks and hopefully that will show what’s wrong with me. I have no clue what’s wrong with me and why I have these symptoms. I’m so sorry you have to go through that too. 
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