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Crohn's Disease or IBS? I'm confused and need advice please.

Posted , 2 users are following.

paul75665
paul75665

Hi All

Hoping someone out there can help me out with what may be causing my current symptoms as I have some doubts concerning my diagnosis of IBS.

For the last 3 years I've been having problems with my digestive system, which has been causing a whole host of symptoms. The main one's are bloating, burping, flatulence, random abdominal and chest pains, nausea, feeling faint and lightheaded, tiredness, unsteadiness like I'm on a boat, infrequent bowel movements, bowel movements going from diarrhoea to normal to constipation, bright red blood after bowel movements. These symptoms happen randomly, sometimes they can last for days, and sometimes only a few hours at most, and then I feel fine. The symptoms also range from mild to moderate, but are generally mild, I have had the odd really bad day but these have been few and far between.

I have had pretty much every test and investigation done on me, numerous blood and urine tests (including 5-HIAA urine test, celiac and thyroid blood tests), sigmoidoscopy, colonoscopies, endoscopy, abdominal ultrasound, stool tests for faecal elastase and calprotectin, auto immune disease tests, head MRI, H. Pylori test and probably plenty more I've forgotten about. I've also seen a gastroenterologist, neurologist and rheumatologist.

From all the testing and investigations done all that was found were rectal polyps which were removed and were benign, internal haemorrhoids (quite bad from what I saw), and 2 positive faecal calprotectin stool test results however no blood present in stools. The positive stool test results were what triggered my last colonoscopy a few months ago, where biopsies were taken. I was told my colon and first part of small intestines looked very healthy and the biopsies were normal, and according to the doctor because of these normal biopsies, the actual look of my insides and all other tests being normal, it is highly unlikely I have Crohn's disease and has therefore diagnosed me with IBS, with the rectal bleeding almost certainly being caused by haemorrhoids. He also said that as my symptoms can change from one hour to the next, and I can go from feeling quite ill to feeling almost normal at the drop of a hat, a lot of my symptoms can be contributed to trapped wind, and / or extreme bloating, which is a big problem for me, I look pregnant most days. He said if I were experiencing a Crohn's Disease flare up, I would be feeling a lot worse than I do, and the symptoms would not come and go in a matter of hours as they do with me, the symptoms would be almost constant and ongoing as long as the flare up was going on.

A lot of what my doctor has sort of helped put my mind at ease, but there is this bit in the back of my head wondering if something might have been missed. When I say I feel normal, I mean as normal as I can, I almost always have a sense of feeling a bit groggy. Are there any of you helpful guys that can maybe help me make sense of what I'm going through please? Does my current range of generally good test results really eliminate Crohn's Disease? Should I be listening to my doctor and trying to get on with life as best as I can? Are there any other tests that I should enquire about?

Any help, comments and thoughts would be very welcome and greatly appreciated.

0 likes, 6 replies

6 Replies

  • paul75665
    paul75665

    Posted

    Forgot to mention that I'm at a healthy weight and haven't lost any or put any on for years, and I still have an appetite, but do seem to have developed a lot of food intolerances and as such am on quite a restrictive diet. Didn't know if that info might be of any significance.

  • chantal_65714
    chantal_65714 paul75665

    Posted

    The only things that cause false calprotectin results are infections and meds like aspirin and NSAIDS. If your calprotectin we’re above 50 then there’s active inflammation in your intestines. I’d ask for an endoscopy or pill cam to check your small intestine for Crohn’s.  I’m going through this atm, they’ve said I’m fine after a colonoscopy but my calprotectin was 338 which is elevated. I have severe right sided ab pain , anaemia and impaction. Because of this they are checking my small bowel to be sure. Fingers crossed it’s just IBS but they need to cross everything off .  Make sure you ask for one . Good luck 
  • chantal_65714
    chantal_65714 paul75665

    Posted

    Ps my dr says “ I can’t have crohns because I don’t have bloody stools” my mum has crohns and never had that. 

    If they’ve done everything they can inc pill cam then thankfully you have IBS 

    • paul75665
      paul75665 chantal_65714

      Posted

      Thanks for the reply Chantal and sorry to hear you are experiencing the same problems as me, its no fun for sure!

      One thing I have found out is that above 50 faecal calprotectin doesn't actually limit active inflammation to your intestines, it shows inflammation anywhere along your gut, and the gut is described as being any part of you from your mouth to your anus. I know in recent months I've been having trouble with my teeth (I'm getting to that age unfortunately) which is causing abscesses. A doctor told me this could lead to raised calprotectin levels as well. I'm also taking a medication that is known to cause irritation to the stomach for some users, this could be also causing raised calprotectin levels.

      Either way I probably need to have my small bowel checked. There has been talk of an MRI as they won't do the pill cam just in case there could be a stricture or some narrowing of my small bowel. Pill cams are only given when they know there are no chances of it becoming lodged or stuck in the small bowel.

      I presume your mum had regular stool tests looking for blood as well as inflammation? They should have done a number of tests to determine whether blood was present or not. From what I've read Crohn's should produce traces of blood during some point of a flare up.

      How are they checking your small bowel Chantal?

    • chantal_65714
      chantal_65714 paul75665

      Posted

      Hi, no not for my Mum , she’s been in remission for 20 years now on Pentasa. I’ve gotta have a pillcam , I’m at a dead end, the pain is so bad, I’m clear of appendix and ovary problems and it’s not ibs pain unfortunately as I know I can control that and it will go within a hour or so 
    • paul75665
      paul75665 chantal_65714

      Posted

      It’s good that your Mum has been in remission for so long, it must give you some hope for the future that your symptoms could be bought under control to give you a better quality of life.

      To be honest my pain is not too bad, it’s easily bearable without pain relief, and it’s not constant either, it’s almost like brief sharp, stabbing pains in my lower abdomen, and usually only happens when I need to pass wind or need a bowel movement, which makes me wonder if my diagnosis of IBS is actually correct.

      I presume you haven’t had an MRI on your small bowel yet? It’s strange that they will offer you the pill cam, especially if you suffer with impaction. I really hope it gives you the answers you want, or at least the answers you need to give you the opportunity to get some relief.

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