Is this Crohns?

[stanleymoragan]

How common is Crohn's without diarrhea (or constipation)? Essentially with perfectly normal bowel movements and no blood?

I've been suffering with pain in the lower right quadrant since Nov 2019

Had all the blood/urine/stool samples check out fine with no signs of anything untoward. Was then referred to Gastroenterology in October 2020 and had a CT scan in Dec 2020. The CT scan was passed as "normal". Consultant chalked me up as IBS (even though I have no issues with bowel movements)

Throughout 2021 the pain subsided down to nothing and by September I was discharged as pain-free

Then in Jan 2022 it came back with a vengeance and I've been pretty much in constant chronic pain in the same spot since (some days are worse than others though)

I had another CT scan and this time they said there is inflammation in the last part of the small bowel and the first part of the large bowel (ie exactly where it hurts!)

Am awaiting a colonoscopy appt now

The closest thing I can attribute the symptoms to is Crohns, but every help site/leaflet about Crohns talks about diarrhea/blood in stools and urgency to go to the toilet. I have none of these - just the pain

Any thoughts?

[penny777]

Hi i have crohns in right lower side think its my illeitis very sharp pain an tender to the touch i dont have bleeding an stools can be hard one day an loose another im not running to the toilet all day im on predisolone at moment another flare up had 3 telephone consultations cancelled with nhs still waiting to see someone had all tests last march if u see my earlier post the pain can be a 10 when flare up hope this helps

[stanleymoragan in reply to penny777]

Thanks for the reply and sorry to hear that you've had such poor standards of care. That sounds way below the minimum expected. I keep being told that there are IBD standards that they are supposed to meet. ibduk.org/ibd-standards

Raise a complaint at the hospital and reference these - they might pay attention then

[penny777 in reply to stanleymoragan]

Thanks for that 💖

[jackdup]

When I was first diagnosed with Crohns my only symptom was weight loss. My BMs were normal. I was a bit tender on the lower right where the terminal ileum is.

[stanleymoragan in reply to jackdup]

Thanks for the reply. Got my colonoscopy on 24th, so should hopefully know more after that. I have lost weight but then have been dieting anyway as i need to lose a few pounds!

[Sherah]

Was just having a look on here and found your post - super helpful as I have exactly the same - lower right pain with no other symptoms (pain has improved over the past year) had a gastro appointment today and he’s referred me for a CT scan - would be great to know how you are getting on! Sorry to hear about the pain you are in.

[stanleymoragan in reply to Sherah]

Hi Sherah - well my CT scan showed inflammation in the Caecum, so I was sent for a colonoscopy. There they found a large suspicious polyp and took a biopsy. I'm still awaiting the results, but the consultant said that regardless of whether the biopsy shows no cancer, pre-cancerous or cancer - it will have to come out!I have an appt with a surgeon just come through, but no test results or any explanation yet

Of course none of this means that's your issue too - the point is, to not let them tell you it's in your head or write it off as non-specific IBS if you still think it's troubling you. Listen to your body. My first CT scan a year ago was clear, but I knew it was still not right.

[Sherah]

Thanks, that’s really helpful to know - sorry to hear this is what you are going though but glad you are on the road to getting more answers - fingers crossed it’s all straightforward. Yes the Consultant said “sometimes we can’t find a reason” which is fair enough but sometimes further digging and prodding is needed!

[Annimay43]

Glad found this. I suffered extreme pain in right side of abdomen 4 years ago. Got fobbed off it was gallstones pain and had removal in Nov 2017. I was convinced was crohns as well but colonoscopy said nope and also ultrasounds. 2018 pain came back and got told by GP was Endometorisis so gyane put me on injections, then I had hysterectomy Feb this year. Now pain is back, it feels like something stabbing me inside and can feel something hard as well pain unbearable some days. Ive constipation, then lose bowel movements. No bleeding or weight loss. Hope u get sorted x

[kel89 in reply to Annimay43]

Hi I was wondering whatever happened with your case. We’re you ever diagnosed with anything?

[Annimay43 in reply to kel89]

The only thing they told me pain was, was Endometorisis back in 2019. They never found any in womb etc now im thinking in bowel cld be or crohns

[IBD_ASD_Mum]

My child's Crohn's, diagnosed last year, involved no stomach pain, no blood in stools, he doesn't usually have diahorrea, his was abscesses causing damage in the peri-anal area, his diagnosis is peri-anal Crohn's. Colonoscopy/endoscopy looked normal aside from the peri-anal damage, but biopsy showed cells related to Crohn's, (giant cells?). I don't know how common it is to have just part of the digestive system affected in this way, but maybe similar to you. Good luck getting answers.

[stanleymoragan in reply to IBD_ASD_Mum]

My appointment with the surgeon is this week. They have said that the initial biopsy shows inflammation only, although they were quick to point out that it doesn't mean it's non-cancerous, just that they small bit they took during the colonoscopy is not cancerous. They will biopsy the whole thing once it's removed (this is the surgery I believe - laparoscopy to remove the large polyp from my caecum)

Incidentally have just been on holiday to Spain and stuck to the low fibre diet and my pain is almost non-existent - just a strange (but not painful) feeling of a bloated/gas pocket in my lower right abdomen, which I assume is the polyp/remnants of the horrible flare up I had in February

Will let you know how I get on

[Choisel in reply to IBD_ASD_Mum]

Hello, Our child is also a rare case of Crohn's (his dermatologist is writing an article on his case) He developed a swollen lower lip and an anal fistula, no bowel issue at all. the lip biopsy showed enlarged cells, the endoscopy and colonoscopy showed lesions all over but that biopsy was not conclusive. His doctor had to pause and did not know what to make of it. We advocated for him, appealed to the health insurance and he was able to start his infusions 3 months ago. Since then the fistula healed, the lip is not as swollen and his blood work is improving. He is an example of patients who do not have any bowel issues at all! I hope this helps other people/families because we had to wait for almost a year before getting the right diagnosis.

[stanleymoragan]

I forgot to ever come back to this thread and let you know how i got on. I ended up having a right hemicolectomy in June. It took 7 weeks for the biopsies to come back and they confirmed that it was crohns and not cancer. Which is a little frustrating that they weren't able to diagnose crohns BEFORE they removed half my bowel.

[Malachy12]

That’s awful for you but I hope you will be pain free and well now.

[stanleymoragan in reply to Malachy12]

Thanks. Recovery has been hard, and they say there is a reasonable chance that Crohn's will reoccur, but i'm ok for now so trying to enjoy it!