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Inflammatory Bowel Disease Monitoring Query

Posted , 4 users are following.

paul75665
paul75665

Hi All

Just after some information regarding IBD monitoring tests for people suffering with Ulcerative Colitis and Crohn's Disease, hoping some of you might be able to help.

I'm currently under investigation for Crohn's Disease, I've had Ulcerative Colitis ruled out following a colonoscopy a few months back, where my rectum, colon and terminal ileum were all reported as being healthy. Biopsies were also taken and these came back fine too. The next step is a small bowel MRI study due very soon. I was told by a doctor that the colonoscopy being all clear is a pretty good sign that I do not have Crohn's either, whether there is any truth in that I'm unsure of, does this sound a correct assumption?

What I'd also like to know is should the MRI scan confirm a diagnosis of Crohn's Disease, are there any routine monitoring tests that will need to be done, and if so, what tests will these be and what sort of results should I expect to see? I've heard that blood tests are a good indicator of inflammation levels in the body, which in turn the levels show the severity of the inflammation. I've also heard that frequent routine colonoscopies and MRI scans are recommended as well. Does this sound correct?

These comments are what I've read about, but I'd be grateful for any information and comments from actual sufferers of IBD to give me an insight into what I should expect in the future should I get a confirmed diagnosis of Crohn's.

All comments and information would be greatly appreciated.

0 likes, 7 replies

7 Replies

  • Jokuar
    Jokuar paul75665

    Posted

    Hi Paul

    You don't say what symptoms you are suffering from or any history so for the moment I'd be delighted that the tests have shown nothing. Colonoscopy AND analysis of biopsies are the definitive method to gain a diagnosis of Crohn's so it seems you are clear at the moment. Regular blood tests are the best way to monitor IBD conditions and these are often dictated by the medication being taken. In the UK MRI scans and colonoscopies are not frequently employed but only when further investigation is warranted. They are both expensive procedures and the latter is highly invasive so is only done if circumstances determine its the best way ahead.

    • paul75665
      paul75665 Jokuar

      Posted

      I really appreciate your comments Jokuar, they are extremely helpful, thank you.

      I suffer mainly with inconsistent bowel movements (going from loose to firm, but I never go more than once a day), random abdominal pains, nausea, bloating, feeling faint and lightheaded, intolerance to foods, and just a general groggy, sick feeling. I had two separate positive faecal calprotectin results recently, hence the investigation into Crohn's disease, which my doctor does suggest could be confined to my small bowel, however I was under the impression this was unlikely for the same reason you mentioned concerning the colonoscopy and biopsies.

      I had an endoscopy about 2 years ago which showed no problems with my stomach, and my last colonoscopy was in November when they took biopsies as well, biopsies came back clear and as I said my colon, rectum and terminal ileum looked very healthy. In the last 3 years I've had abdominal ultrasound, head MRI, back and chest X-Rays, two colonoscopies, one sigmoidoscopy, numerous blood tests from autoimmune disease to celiac disease to basic total blood counts, urine tests including the 5-HIAA test used for detecting tumors, faecal elastase, seen a gastroenterologist, neurologist and rheumatologist and nothing or no one can find anything wrong, other than the two positive faecal calprotectin results and internal haemorrhoids.

      Does this sound like Crohn's Disease to you? To me it still sounds, and feels like, my initial diagnosis I was given of IBS, which seems to be have become generally worse and more frequent lately. I find it weird as well that I can go from feeling pretty ill one day, and being almost symptom free the next. And my symptoms can change during the day as well, one minute feeling ok, the next feeling quite ill. Surely Crohn's flare ups would make you quite ill for days, weeks, even months at a time??

  • ruari1
    ruari1 paul75665

    Posted

    Having suffered from UC for almost 7 years I have tried numerous drugs to combat inflammation! The meds I am on now are helping the symptoms and I am checked each month thru blood tests! These give indicators as to inflammation levels and blood count! However the meds have some horrendous side effects and I now have to take additional drugs in order to combat these! It's a vicious circle really! The choice I have is to stop all meds and to return to the original horrors presented by UC! I continue to be monitored 6 monthly  by hospital consultant but I can see no end to my situation! My quality of life particularly with the side effects is very poor! I plod on hoping for some improvement overall!

    • paul75665
      paul75665 ruari1

      Posted

      I'm really sorry to hear you are having to deal with your UC and the symptoms of it, it sounds horrendous, made worse by side effects of the meds you are having to take that should improve your condition, it sounds a no win situation, and I should be counting myself lucky that my symptoms seem quite mild compared to what you have to go through. I can sympathise with your condition affecting your quality of life, I've tried to hold down a job in the last 3 years, but I can't, and I'm missing out on so much to life it really gets to me. Like you I hope to improve, but the future isn't looking great at the moment.

      Thank you for your comments, I do appreciate them, and I really do hope you get some quality of life back and soon.

  • ruari1
    ruari1 paul75665

    Posted

    Not sure how Crohns affects you but initially with UC I was visiting toilet 15/20 times daily, was ill all the time and weight loss was awful! Dropped to less than 7 stone from 9.5 stone in 3 weeks! Stable now and gained weight but having to put up with other and equally awful symptoms! Really it's all about trial and error and regular colonoscopies are recommended! Good luck with your problems!  There is light at the end, I'm sure!

  • cheryl52225
    cheryl52225 paul75665

    Posted

    Hi Paul my boyfriend has been having trouble with stomach pains feeling ill most days tired mucous in stool he’s lost two stone and has constipation our gp told us with crohns you have diarrhoea not constipation I found this to be untrue some people who have crohns have constipation or diarrhoea anyway boyfriend has had a colonoscopy and biopsies all appeared normal he’s had a barium meal of small bowel normal results now he’s waiting for a pill camera consultant seems to think he has irritable bowel syndrome I joined a group on Facebook called crohns and colitis U.K. forum I got a lot of information off people who have been diagnosed with ibd 
    • paul75665
      paul75665 cheryl52225

      Posted

      Hi Cheryl

      Thank you for your input. Interesting news concerning constipation and IBD, that's something I didn't realise. I have basically been told that I don't have IBD, the doctor who did my colonoscopy with biopsies said he'd be happy to give a diagnosis of IBS based on how mild my symptoms are, how there is no unexplained rectal bleeding, and that I'm not in great pain, discomfort and distress, plus how healthy my colon, rectum and last part of small bowel looked, especially if my biopsies came back clear, which they did, but that was a decision for the senior doctor to make. There has been talk of investigation into my small bowel, but there isn't a prompt response regarding this so I'm taking that as good news.

      I do feel mild sickness and nausea, plus bloating pretty much everyday, and I have heard IBS flare ups can last months, even years in some people. Perhaps that is what I am going through, a constant, mild IBS flare up, I certainly don't feel like I have something more severe going on. I've also heard the medications I am currently taking can make people feel worse than they are. Still I guess further investigation will help to resolve this once and for all.

      Thanks for the heads up about Facebook though, might prove quite useful.

      Hope your boyfriend gets to the bottom of his problems soon. Take care and thanks again.

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