List Of Crohn’s Disease Symptoms

Hi Paul when you are feeling so bad is it possible to get to your GP and have them send you for a blood test there and then which can show your inflammation levels, which is an indicator as to what is going on. One time my levels were so high it turned out I had an abscess yet before in the same week during one of my regular checks my levels were normal and my discomfort wasn’t any more intense than usual. I never had all the symptoms you describe, just discomfort and needing the loo a lot. Warm water helped, just fluids and no food for a day or so, codeine based painkillers and mine would settle down until the next time. Do you keep a food diary? I could never pinpoint what caused my flare ups, I was told to avoid dried fruit and high fibre foods and anything dense like a doughnut never went down well. My friend worked with a young lad who could pig out all day on chocolate but a sip of tea would upset him, everyone is so different with their experiences, another friend reckoned plenty of bananas after the skin had gone black and the banana was soft and mushy. My flare ups would only last a day or two and I’d have long periods inbetween, it’s always there unfortunately, it’s what sets it off again that’s the frustrating part. I have read some good books written by people going through it, The Foul Bowel was a good one, even funny in places and Go your Crohn way, interesting reading other people’s experiences of Crohn’s.  

Hi Anna

Thank you so much for your reply.

I would try and get a blood test done, but there are two reasons why I reckon it wouldn't be possible. One is that since having been diagnosed with Fibromyalgia, IBS and Anxiety (forgot to mention CFS has also been diagnosed) my doctors are now very dismissive in any form of further investigation I recommend.

The other is that in the past 2 years or so, I must have had around 10 to 12 blood tests done and not one has shown any signs of inflammation no matter how ill I am at the time. I had a blood test taken at the same time my faecal calprotectin tests were done, one calprotectin level was >300 the other was >1400, yet my blood tests showed no signs of inflammation.

I've had numerous other blood tests including ones for autoimmune disease, HIV, liver function, celiac disease, H.Pylori (probably missed some out), on top of the routine ones. I've had urine tests including the 5-HIAA test, stool samples checking for feacal elastase and blood on top of calprotectin, I've had abdominal ultrasound, head MRI, numerous chest and back X-Rays, Endoscopy, Sigmoidoscopy and two Colonoscopies, one with biopsies, and everything has always come back normal. In fact during my last colonoscopy with the biopsies, the doctor and nurses commented on how healthy my colon, rectum and terminal ileum looked. I feel so lost at present and I really don't know what to do. And to top it off, today I feel quite grotty again, yet yesterday I felt fine all day other than a brief moment before bed when I thought I was going to be sick, which is a new occurrence for me, but I just fell asleep instead.

Thanks for the advice about the food diary, I have kept one before, but gave up as there didn't seem to be any pattern between what I ate and how I felt, I will try again though, maybe there is something I have missed.

I really appreciate your comments, thank you so much. I just need to know where to go from here, I'll try my doctors again but I know what they'll say. I just feel like I'm a time bomb waiting for the day that my symptoms get so severe that something really bad happens and I get rushed into hospital, either that or something worse! The thing is I've got this feeling as well that they'll never get worse, I seem to have hit a peak in my illness symptoms, it never gets any worse than it can at present, and I've been like this for nearly 4 years now.

Hi Paul, from what you say it doesn’t sound like Crohn’s and if all seems normal with your bowel it can’t be ulcerative colitis or diverticulitis. How frustrating for you, if you feel ill and have pain then something is going on. You seem to have several autoimmune diseases which must really take a toll on your body. I had anxiety disorder many years ago but it didn’t make me feel ill, I can imagine if it’s severe it would affect your digestion, all that adrenalin working overtime. Have you been on any forums for CFS and Fibromyalgia to ask if any sufferers have experienced the same as you? How about going for some relaxation/meditation/yoga, something to quieten the mind? Sorry I don’t have any answers or more suggestions but try and stay positive and be kind to yourself 

Thanks for the suggestions Anna, really appreciate them.

I'm not ruling out Crohn's, but as you said, and has been my suspicion for some time it really doesn't sound like it. My bowel movements are regular and normal, albeit I only go once every 3 days but I believe that is a combination of being on a low residue / fibre diet and taking Mebeverine, an antispasmodic drug that slows the action your bowels down. No matter how ill I am I never have a raised body temperature, and my blood pressure and heart rate is always fine, and as mentioned before all other tests are fine. As you said, which incidentally the doctor has suggested to me previously, if my anxiety is that bad then all the adrenaline inside me not being used in the way it should is enough to make anyone feel ill. I've also had SIBO, Candida and food intolerances mentioned to me before as possible causes, all of which can cause inflammation.

I think your idea of talking to Fibromyalgia and CFS sufferers to see if they suffer with symptoms like mine is definitely something I will do. Fibro and CFS are known to cause digestive problems, and to get a better insight into these conditions and the affects they have might give me some answers.

Thank you again, and I'll keep you posted with any findings I discover.

Just to add, Stress relieving activities such as yoga, swimming, walking, anything you find relaxing also helps to reduce symptoms. Self care all the way. 

Hi Sara

Many thanks for your comments and suggestions.

The thing with me is that I don't know if I've actually got Crohn's, all tests done on me to date, of which there are many and I have listed in this discussion, and not really sharing any of the common Crohn's symptoms suggest that I don't have it. This week for instance, I felt really ill all day on Tuesday, on Wednesday I felt fine and yesterday I felt a bit grotty for the first part of the day but the latter part I felt fine, my symptoms are totally random. The only test that could be linked to Crohn's is the positive faecal calprotectin results, but this could also be caused by food intolerances, SIBO, Candida, but to name a few. I have already seen a dietician in my time being ill, kept food diaries and tried to play with my diet and nothing seems to work, it's almost like my digestive system doesn't want to work properly.

Your comments on stress relieving activities are very useful, thank you. Unfortunately I'm pretty much house bound due to what I presume is my Fibromyalgia and CFS, and I find any activity really hard to participate in, we're decorating at the moment and I tried to paint one side of a door, by the end of it my hand, arm, shoulder, back muscles and joints were agony, and were like that for a few days, being in that much pain then just adds to my stress levels. The two things I love doing most that I find relaxing are upgrading and repairing computers, or playing my guitar. Unfortunately I've tinkered and sorted out all the computers I can get my hands on, and can only play my guitar now for no more than 20 minutes before my arms and fingers ache and hurt. I'm bit of a sorry state of a human being to be honest.

I am grateful for your comments Sara, thank you, and self care is a way forward I'm sure, but I just don't know where to start when I'm so limited in what I can do.