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Erythematous inflammed mucosa in terminal ileum

:ybatty:

ive had a colonoscopy which found eythematous inflammed mucousa in Ti,but biopsy resuts were normal,
then a barium follow through,which was normal,
then an endoscopy which found patchy erythema and oedema duodenal bulb,but biopsys came back normal,

i was rushed to ER as i collapsed in horrendous pain,and kept on morphine drip..still on pain killers

then had a ct scan which has come back normal??

the thing is my pain,diarrhoea(have had 1 with blood),thin pencil shape stools in between,noisy tummy,and tiredness are noy any better??
the Gi wants me to go and see him for another appointment but what else can they do??...i feel a bit exhausted and fed up with all the tests..i HATE the preps!!
i just wish i could be back to how i was before all this started,what other tests can they do??...im super tired and my eyes constantly have a burning feeling,my finger bones and my knee are feeling sore stiff and creeky..sorry to sound like im moaning,im just feeling sooo drained..and now i have huge glands up behind my ears??...
should i bother going back to the Gi or just carry on taking pain killers???
so sorry for sounding negative...:sorry:
 
Hi zoe

You could ask for a capsule endoscopy, which will be able to get to the areas the others couldn't. Prep is minimal (you dont eat the day before) and it like swallowing a large tablet. You'll need to check with you gi though to make sure your suitable (for folks with strictures etc there could be cause for the capsule to get stuck).

I know its difficult at times to stay positive, but go back to your gi and ask for more tests.
 
oooh good idea!!! thankyou,i will ask him for one of those!!..
would the ct scan not see it all then?...
thanks for helping!!
 
No CT scans don't always show everything. I've had endoscopies, colonoscopies, CT scans and a whole host of other tests and the only one that showed ulceration and inflammation was the capsule endoscopy. The only downside is obviously biopsies cant be taken, but its a pretty good start though.
 
oh wow!!!..
weird isnt it,that on both my endoscopy and colonoscopy they find red inflamation,,,but it doesnt show on the other tests...
do you go home with the capsule in your tummy??..or do you have to stay in the hospital??...
i hate it as my hospital is 1 and a half hours drive away..and i have to stop en route for the toilets....even the roadside trees and bushes look tempting half the time!! heehee
how long did you wait for camera results?? :)
 
Yes you can go home after you have swallowed to pill camera and they have put the receiver kit on you (its like a big belt with a small computer on it). You return to the hospital after about 8 hours (or when the charge light changes colour - they'll explain all the ins and outs when your 'fitted':))

As for the results, it depends, sometimes a couple of days other times a week or two (a specialist has to go through the 50,000 or so images it has taken).

Hope that helps!!
 

Crohn's 35

Inactive Account
Hi there,my Gi too says my CT scan was nothing...well that doesnt surprise me, a pill cam is a good idea but ONLY if you are not narrowing, some people on here have had to go to the ER to get it taken out. I have a tendency to narrow so I opted for another colonoscopy, quickeasy and done. Your doctor will know if it is right for you, hope you feel better soon!
 
aww thankyou!!...im not of any narrowings...although recently in between my D..im getting the thin long squishy poo's??...should i tell him this??...
thanks for listening you guys
 

Crohn's 35

Inactive Account
Yes! How your poop comes out is a crucial thing, which could mean several things, and that could range from scar tissue, IBS to a partical blockage or stricture. My opinion a pill cam is risky. It is your choice tho. Good luck!
 
I have heard that there is also a dissolvable dummy capsule they can use to check for strictures prior to your actually ingesting the camera. If it gets stuck I believe they can tell where, and as it dissolves it doesn't pose a hazard.
By the way, I am sorry you're still undxed. It's one thing for them to find nothing, but when they can see inflammation and still the biopsies show nothing? That must be frustrating to no end.
 
oooh thats a fab idea!!...sounds safer!!
its is so frustrating!!..as the nurse who did my colonoscopy was the IBD specialist nurse and she said to me it was crohns??.and even brought the pictures in to the room after my sedation for my family to see...but no one has said anything else other than the results have been normal from the biopsies!!..grrrrr...i dont want it to be crohns,but i would love to have some answers..as im losing weight quite rapidly now...which i normally wouldnt mind,but my clothes arnt fitting!!!
hey ho...fingers crossed they find out for sure??!!!
xoxoxox
 
No CT scans don't always show everything. I've had endoscopies, colonoscopies, CT scans and a whole host of other tests and the only one that showed ulceration and inflammation was the capsule endoscopy. The only downside is obviously biopsies cant be taken, but its a pretty good start though.
Same here. I had a normal CTE, and the pillcam found ulcers on the wall the of jejunum. If they find anything, they will schedule a double balloon endoscopy to get biopsies, not a big deal.
 
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