I’m hoping that some Crohns Disease sufferers would be kind enough to let me know all the symptoms they experienced, no matter how big, small or insignificant they seemed at the time, leading up to their diagnosis, and the symptoms they suffer with at present.
I’m getting mixed signals from health professionals at the moment, and I’d just like to compare the symptoms you suffered with, with the symptoms I experience at present. I know we are all different and illnesses affect people in different ways, I’m just hoping to build as a definitive list as I can of symptoms that people, myself included, should be looking out for concerning Crohns Disease.
Your help and information regarding this would be greatly appreciated.
Hi Paul - I got cramping so severe I collapsed at work and had diahrreah as well as vomiting . Other symptoms were things like aching wrists and joint pain and nausea. I ended up in hospital for three weeks . Been in and out of hospital ever since and that was two years ago.
Hi Paul, my symptoms started over 3 years ago. I completely lost my appetite but was visiting the loo around 10 times a day. Obviously i was weak and tired. This lasted for 3 months. Since then i have daily pain and still visit the loo often. I have had 2 lots of steroids which have worked really well, and starting Azathioprine next week. Only had official diagnosis 2 weeks ago so has been a long journey!!. Muscle and joint pain also a problem. Good luck!!
Hi Paul, mine started 12 years ago with a vague pain upper right abdomen. Next 4 years no problems then same pain started up again with diarrhea, every time I had a flare up these would be the symptoms. Occasionally I would bring up undigested food and I couldn’t eat big quantities without discomfort. By the time it got to the point I needed an op the discomfort was more central. I never felt ill, it was more of a nuisance than anything until it settled down again
Around 2 years ago I started with a vague pain under my ribs that came and went. I had an aultrasound that came back clear and was put on lanzaprozole with seemed to make it worse. Around the same time I started really suffering with allergy type symptoms. These got so bad that I would wake through the night unable to breath and had sores up my nose and eventually nasal polyps. It was as though my immune system was going into total overdrive. Shortly after this I started to experience diarrhoea and bleeding. This got really bad. Like going to the bathroom probably 20 times a day. I saw my doctor who diagnosed piles!! . My tummy was also really tender and I had urgency. I ended up in a&e and they wanted to keep me in. Due to not having enough beds I was fastracked to see a consultant within a few days and given a colonoscopy. During this test they found my bowel to be so poorly that they admitted me on the spot and started steroids. These seemed to work for a day or so and then my symptoms returned. I then started on Infliximab infusions which did the trick - there had been much talk of me losing my bowel. I started azathioprine a few weeks later. I have since cut out gluten, lactose and sugar and have been placed on a high dose of vitamin d. I also stopped azathioprine as this just didn’t agree with me. I currently feel great and am completely in remission. I have also been vitamin b12 deficient in the past but they couldn’t find a cause at the time.
Looking back now I had symptoms some 10 years ago. I often felt bloated or full after only a small snack or meal. Another symptom I had often and still recurs these days though in relative remission is that if I don't eat for 3 hours or more I get an increasing gnawing uncomfortable feeling in lower stomach. If I don't eat for say 4+ hours the feeling does not go away even when I eat.
I was diagnosed in early 2015 after non specific pains/cramps before and after meals not relieved by bowel movement. The latter became more frequent with blood at times and I would often go to loo 15+times a day. My GP referred me urgently and after stool samples and a colonoscopy in April 2015 I was diagnosed with severe inflammation with Crohn's colitis. Thereafter prednisolone quickly brought some relief but ongoing Azathioprine and then 6-Mercaptopurine whilst subduing symptoms caused dangerously high readings of my liver and pancreas. From August 2016 to the present day I have been on fortnightly Humira injections and generally in remission apart from an abscess which arose last November. Day to day now BMs are normal and I eat fairly well. I found that omission of fresh milk products to be beneficial though I still enjoy cheese and yoghurt. I still get a lot of unexplained bloating and that nagging pain I mentioned if I don't eat every 2/3 hours. I drink plenty of water and take fibre supplements to ensure bowel regularity. Am always conscious that a flare could be around the corner and keep a close eye on BMs and body temperature which is a good indicator of inflammation. Hope that helps. Pete
Fatigue/exhaustion, Headaches, joint & muscle pain, brain fog (can't think clearly), nausea, mouth ulcers - sometimes very bad. And then the gut pain and discomfort which can be wide and varied, although, personally I don't have to urgent go to the loo - I'm actually on the constipated side most of the time.
All of the above can have a knock effect e.g. sleep deprived which can cause worse fatigue and impact my vision - like it's tunnel vision.
Take a look at Crohns & Colitis UK for loads of info packs covering just about everything - it's all very well presented and easy to understand.
Wow, what a response. Thank you all so much for your insight into Crohns symptoms, I really do appreciate them. I’m so sorry that you all have to deal with this debilitating illness.
I’m asking as my doctor doesn’t seem to think I have Crohns, yet I’m not convinced. In the past 3 years I’ve had numerous blood, stool and urine tests, x-rays, endoscopy and two colonoscopies (probably missed other tests done) and the only thing found were haemorrhoids and two positive faecal calprotectin results. I’ve since been diagnosed with Fibromyalgia and IBS, and my symptoms are tiredness, slight nausea, odd bouts of feeling lightheaded, stomach and bowel churning and gurgling. By comparison to all of your symptoms mine are very mild, and they can change from one hour to the next, feeling groggy one minute to feeling fine an hour or two later.
I guess the only way I’ll ever know is if my symptoms take a turn for the worse, but I’ve been like this for at least the last two years, I dont seem to be getting any worse.
I’d be interested to know what you all think of my situation. I keep mentioning it to my doctor, which incidentally is now my third opinion, but he like all the others says there is no point in any further investigation, and if I did have Crohns I would be feeling a lot worse than I do at times.
I’m in the same situation as you, elevated calprotectin, anaemia, blood, impaction, pain. But clear colonoscopy and pillcam endoscopy. I’m at my whits end
Sorry to hear that Chantel, it is an absolute nightmare I know. Have to say that since leaving milk out of my diet for almost 2 weeks now and I do feel generally better, although still not 100%.
Hi Paul, I had Blepharitis in the early stages after diagnosis and was told by the specialist it can happen in people with Crohn’s, I guess if your immune system is compromised other parts of you can succumb to infections
Funny you mention that Anna. My right eyelids have been really inflamed with a sore, gritty feeling for the past week. On top of that I've been feeling a lot more ill than usual for about the same amount of time, with today being the worst, really bad upper abdominal pains, chest pains and an 'out of it' feeling. I know that just before I had the inflamed eyelids, I was working underneath my fathers car and got some dirt in it, so I can't tell if my eye has been aggravated by the dirt, and the more ill feeling is just coincidence or whether the illness and eyelid inflammation are linked. I have had this before a couple of times in the past, once only in the right eye and after working under a car, but the other was a total random occurrence. I did see the doctor about it and he was adamant it was a combination of being run down with my Fibromyalgia and IBS, but now I'm starting to wonder. I don't experience any problems with my left eye other than bouts of twitching now and again, again told that this was the effects of Fibromyalgia.
Hi Paul, my doctor was quick to refer me to an eye specialist, if I can remember that far back my eyes were itchy and I possibly had a bit of conjunctivitis as well, it wasn’t clearing up with eye drops so a second opinion was sought. She coated my eyes in some sort of goop while she examined them and prescribed steroid drops, saw her a couple of times and the drops cleared it up, haven’t had any bother since but I was amazed she linked it to Crohn’s. I wasn’t particularly suffering any flare up at the time and I was still learning about the impact Crohn’s can have on the body.
I don’t know much about Fibromyalgia, I have a couple of friends who have suffered with it but it was body aches and pains and general debility they had. Maybe mention the eye condition next time you see your GE, especially as you were feeling so unwell at the time.
I do have one other question I'd like to ask you all. Yesterday I felt absolutely awful, faint and lightheaded, painful stomach and lower abdomen, bloating and burping, lots of abdominal churning and gurgling and really tired. I'd been feeling quite groggy for about a week, but it was definitely worse yesterday. Now if Crohn's Disease was a causing factor for my symptoms, then you could say that I was in a flare up phase. The thing that is really confusing me is that today I feel absolutely fine, I don't seem to be experiencing any symptoms whatsoever, and if I am then they are so mild that I'm not noticing them.
My query is whether Crohn's Disease could make you feel awful one day, but present no symptoms at all the next? From my understanding Crohn's Disease flare ups can last a long time, perhaps never really go away, so why would my symptoms disappear just like that???
Any thoughts and comments on this would be very welcome.
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.