Could this be a crohns flare?
Posted , 8 users are following.
A little background info: I was diagnosed with IBS a long time ago. Randomly started having diarrhoea 3 years ago (No history prior to this) In this time have had 3 big attacks lasting one month of continuous diarrhoea and tonnes of smaller ones lasting one day to a week ish. Last summer was the worst ever, had D for 4 months solid coupled with mucous and crippling abdominal pain that left me curled up in a ball. Got refered for a colonoscopy but they couldn't complete it due to my bowel being to tightly looped so they couldn't say whether I had crohns or not. Since things eventually calmed down, I was told it was probably IBS and left to get on with it.
For the last week I have been suffering with bad abdominal pain that's been getting worse, to the point where today I couldn't stand up and almost passed out when I did. I haven't had D until today. The pain is the same as last year, I'm wondering is this the kind of thing that would happen with a crohns flare? Is it possible to have crohns and be symptom free for periods of time if you're not on meds?
Don't get me wrong, I'm more than willing to accept that it's just bad IBS, but when you're in that much pain you can't help but wonder.
0 likes, 12 replies
Alfielefoo leeniepie
Posted
Also, if they couldnt get round with scope, they could give you a ct scan?
I was undiagnosed for decades, and recovered in between(well i felt ok, but insides werent)
Please see your gp.
leeniepie Alfielefoo
Posted
I had the calprotectin test twice. When things were bad the results were 250. The 2nd test was when things were calming down and I never got the result but was told it was within normal range.
I had a ct colonography which was useless. I'm a radiographer so knew you can't diagnose crohns with it and the consultant who did the scan agreed with me.
Alfielefoo leeniepie
Posted
That sounds not ideal.
I guess you could ask for a blood tests and a referral to gi? What about mri?
I saw a consultant at the bmi hospital prior to being diagnosed. Dont know if this may be an option for you.
UKMattG leeniepie
Posted
+1 on the stool tests. This is a good starting indication. To be on the safe side you'd need to have it during a flare up.
las01 leeniepie
Posted
I also had that problem on my 1st colonoscopy & it took till I was seriously ill & a really good consultant to get my diagnosis. They should check your bloods for inflammation, that should show that it's more than IBS
Good luck
Lesley
stephaney28634 leeniepie
Posted
leeniepie stephaney28634
Posted
Yes i had blood tests and i dont think they showed anything.
Went to my gp yesterday and I got told to take peppermint oil and ibruprofen😧
stephaney28634 leeniepie
Posted
Hi, be careful taking Ibruprofen only for short time. If, it is Crohn's you have it can give you a flare up.
Hollaka79 leeniepie
Posted
Hi. Sorry to hear you're feeling so poorly. I've had Crohns 30 years so know how "crappy" it can be. I would definitely recommend getting another fecal calprotecin done of you're in the midst of a flare. It can rise quite quickly. Mine went from 130-250/-+600 in matter of weeks so ask for it to be check again. <50 is the norm & would indicate ibs at 130 you'd get a "meh" from a gi over 250 they'd start paying attention (in my experience anyway).
As for bloods, my labs are always fine, even in the middle of a flare so I don't take them as gospel. I also had a colonoscopy/endoscopy done a few months ago, both which were normal. Two weeks later I was admitted to hospital with major flare. They then did MRI which just showed slight swelling as did my CT scan (so nothing major on tests). Meanwhile I'm deteriorating big time, they had to pull me off azathiaprine as that had damaged my liver & had me on steroids. They wouldn't start me on anything else as my tests were all normal apart from my FC. So I battled with them & finally got a capsule endoscopy done which finally showed ulceration & major scaring in my small bowel. None of which was picked up on any other scans.
So my long winded point is. Crohns can be really tricky to diagnose (I went 3 years prior to being diagnosed) so if you feel something's up you're probably right. Keep pushing for tests & answers & hopefully you'll get your breakthrough soon ??
leeniepie Hollaka79
Posted
Thanks for your response. I've debated paying for a pill cam but it's pretty pricey.
Hollaka79 leeniepie
Posted
Ahhh yes. The joys of the NHS in the UK. I'd be lost without it...
sheila51371 leeniepie
Posted
Hi leeniepie
I have read your letter and understand why you feel that there has to be an answer to the intermittant bouts of D which are lowering and painful apart from anything else. I have suffered from Crohns for over 50 years and the initial diagnosis was Illieitas, inflammation of the illieum. Crohns at that time was not really talked about because you were not going to live that long. I have had friends with Colitis and they suffered badly, but the main difference I feel is that Crohns affects a lot of different areas, from Mouth (your eyes) to your Bottom and even sometimes your legs. The way you fight infections and diseases is compromised because of this and you become extremely allergic to various things and "smells". My first operation was done 48 years ago by a Surgeon who luckily had been to America and brought back handwritten notes about what to look for and what to get rid of whilst I was on the table. Sorry I know it sounds as if I am making light of your own complaint, which I am not, but I am sure that Colitis whether ulcerated or not, does the same thing as Crohns. Just thinking about the National Association of Crohns and Colitis sufferers is linked together, so to some extent I think I think we all suffer from really lowering symptons which take over your life. However, the most important thing is that you make sure you get a good Gastroentermologist and one you can speak to. I had a brilliant man who has now retired, but he still advises me if I develop other new symptoms and things that need to be sorted. I think I am right in saying that both Colitis and Crohns sufferers have had to have Colostomies or Ilieostomies, so once again that is the same. I just feel that you really don't need Crohn's as well as Colitis, so hope your feelings about this are wrong and that however bad your D is it is not a flare of Crohn's. Over the years I have found that baked potatoes with fresh pineapple helps your tummy and instead of drinking hot tea and coffee I have hot orange or lemon juice (which normally can be left to become tepid and doesn't taste bad, whereas tepid tea and coffee is an acquired taste.
Best wishes leeniepie and I hope you have taken Alfielefoo's advice about going to your GP.
Sheila 51371 .