Crohn's Disease Forum » Support Forum » Undiagnosed Club » Could this be Crohn's?

07-02-2013, 08:14 AM   #1
Join Date: Jul 2013
Location: UK
Could this be Crohn's?

Hello everyone.

I hope you don't mind me posting here - as I don't actually know whether I've got Crohn's or not! But I just wondered if these symptoms sound like it might be Crohn's?

I'm sure you're all used to this .... but I apologise now if this is TMI!!!

I've had bouts of multiple mouth ulcers for several years now ... and I've always put it down to stress (Dr couldn't offer any other suggestions!). Also caffeine or chocolate seem to make them worse or bring them on. And I'm talking LOTS of mouth ulcers at one time ... 20-30 usually more than I can count. Anyway - as I said, I'd always put that down to stress.

Then, about 7 weeks ago I suddenly started having diarrhoea every I went to the loo ... and very quickly this progressed to bloody diarrhoea. Lots of blood - the water in the bottom of the toilet bowl looks dark red. I also noticed there are often a lot of blood clots too. I have to 'go' about 2-4 times in the morning before I eat ... and then 1-2 times after every meal. I get cramps just before and then I urgently need to go .... always diarrhoea - always mixed with blood - sometimes less than others, but it's always there My mouth ulcers also returned a few weeks ago and only just now do they finally seem to be getting a bit better. My mouth ulcers used to last about a week .... this time it's been about 5-6 weeks. Eating is incredibly painful and slow... and then what I do manage to struggle to eat seems to leave me very soon after!!

I've also lost about 10lbs without trying (for the first time in my life!!).

I started the ball rolling with the Dr a few weeks ago ... but the NHS has taken quite a while. Anyway - I have a flexible sigmoidoscopy booked for Monday - but was wondering if I should really be having a colonoscopy?! I've been sent an Enema kit to do at home, but no instruction as to when I should use it ... how long before the sigmoidoscopy should I do it?! I'm soooo hoping for some answers on Monday ... but I'm worried they won't find anything (which sounds a crazy thing to say - but I just want a diagnosis, there is something very wrong in my gut!)!

I am very tired all the time .... but I have a 3 year old plus twin babies (8mths) - so tiredness comes with the territory!

Could this be crohn's?? I am, of course, also worried about colon cancer ... but I know that is unlikely given that I am a 38 year old female ... fingers crossed!!

Any idea/advice would be greatly appreciated.

07-02-2013, 09:31 AM   #2
Forum Monitor
Clash's Avatar
In my opinion, I would ask for the colonoscopy. CD can manifest anywhere from the mouth to anus and the sigmoidoscopy doesn't go very far up the colon.

My son had an upper endoscopy, colonoscopy and an MRI. His CD was located in his TI which is where the colon and small bowel join. It is a common place for CD and a sigmoidoscopy won't go that far.

I do hope you get some answers soon.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-02-2013, 10:22 AM   #3
Senior Member
rollinstone's Avatar
plus one for what clash said, push for the colonoscopy, hope you feel better soon
07-02-2013, 12:29 PM   #4
straker's Avatar
Join Date: Jun 2013

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I am under investigation for crohns too..its so different from when I was under investigation for UC back in the late 1980s early 1990s all they did then was a colonoscopy and a blood test .I ;;had;; UC so they say for a few years then it went away when I started with my spinal operations .my CD is a recent and very unwanted problem I have enough to worry about as it is {health wise ] has anyone had the nuclear marker test where they take 100ml of your blood then mark it with nuclear markers then MRI scan you every 3 hours ? and the following day I am having a bone density scan ..I have already had a CT VC and MRI both with oral and IV contrast ,,its all very new and stressful for me .I have only had bowel problems since easter 2013 it came on with in 72 hours from no pain to so bad I was in hospital .now I am waiting for the MRI test to get a definitive result and find out if I have CD or bowel consultant has told me to prepare for anything from IBS to cancer !! I will be honest with you folks I am out of my depth with this bowel thing I just can't cope .I have put ..rather lost so much of my life to intractable spinal pain that another life long /altering illness seems to be very unfair .I have looked after myself keeping fit not drinking /smoking .swimming I am a vegetarian .I feel cheated at just 47 I am housebound and frail .I feel like getting drunk and smoking 100 fags !! LOL but I wont .my fear is being told I need a colostomy this will finish me off I wont be able to cope with that and I admire those that can and do .I know I wont be able to cope as I am incredibly private about bathroom activities .I think I have a little OCD regarding bathroom activities .anyway I will soon get my results
07-02-2013, 02:16 PM   #5
Join Date: Oct 2012

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Hi, to check for Crohn's thoroughly, you'd ideally need a colonoscopy and upper endoscopy. However, the sigmoidoscopy is a good place to start - it's less invasive than other tests, doesn't always require a full laxative prep/fasting beforehand, and although your symptoms do sound a lot like Crohn's or colitis, there are other possible causes so it always helps to have any test that could rule things out.

If there's a phone number for the department conducting the test on your appointment letter, call them to ask about instructions for the enema. Was the test ordered by a consultant or your GP? If it was by a consultant, call his/her secretary and they should be able to give you the information or at least direct you to someone who can. Unfortunately, you'll probably become quite familiar with dealing with the NHS and its downsides - long waiting times and poor communication. But it's worth putting up with for free healthcare - you just need to make sure you get a good doctor (easier said than done sometimes) and be prepared to chase them up for appointments, results, etc.

I've only had an enema once, before a surgery, but they did it for me at the hospital the morning of the surgery. Preps can vary a lot for different procedures and depending on different doctors' preferences.

If you're still without answers after the test, you may well be referred for a colonoscopy as the next step. This will be able to diagnose colitis or Crohn's in the colon, and will rule out colon cancer if that's still a concern.

I hope the test goes well.
07-02-2013, 03:53 PM   #6
straker's Avatar
Join Date: Jun 2013

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hi I have had many colonoscopies over the years back in the 1980/90s when they thought I had CU .at the time I could take picolax/clean prep and all the other revolting preps but now I can't even put them near my mouth I am violently sick .luckily there is a prep in pill form not many people know that it exists and many hospitals don't use it because its different to the normal .its called osmoprep and when I need a colonoscopy I will use the osmoprep .my main problem is pain I already suffer with back pain but this new pain is awful and that's putting it politely .I know I am in for a rough time ..whats new !! .

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