Where abouts is your crohns

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where abouts is your crohns

Hi guys how are you all. So i went to the specialist the other day and can't change my meds or anything until i completely ween off the pred.

When i first had my colonoscopy done in august (when i was first diagnosed) they found that only my large intestine was affected and inflamed. With my caecum and descending colon in a moderate to server state, ascending colon in a moderate state and transverse colon in a mild state. I asked the doc on a scale of 1-10 how bad my condition was and he said at least a 6-7....I was shocked because i thought it would of been ok as my ileum or small intestine was not affected. I also asked him what are the chances of it spreading to other areas but he couldn't really answer that.

I guess what I'm wondering is where about are you guys are affected, has it spread much, and do symptoms differ much from where abouts each person is affected. he also said theres a 50/50 chance i'll need surgery in the future.....lets hope its the 50 that doesn't. i want to do everything in my power to manage and control this disease as i can, while still living a normal life.

thanks for listening guys
 
Mine is at my ileum - where the large and small bowel join - this is most common supposedly. My Mum had it there but had an Op and now bad. Mine doesnt seem to have spread at all but I do have scarring and a damaged rectum tract, or something (how lovely).

Hope you feel better soon.
 
This current flare is in the jenunum. GI said its where they can't scope it so I get progress report via CT scans. I have had it in both the ileum and duodenum also. Lots of scar tissue and thus the pain without having to have a flare up. Such fun.
 
It was in my large intestine then spread to my small intestine. They cut most of that out, now it's in my small intestine further up.
 
I will sort of agree with Katiesue, I have issues throughout my large and small bowel, right up to the rectum and with my esophagus.
 
if i remember correctly, based on what my past medical remarks said... my areas of inflammation are in my transverse and descending colon, but the most severe in my terminal ileum and cecum.
 
My doctors colonoscopy report stated the following:
Moderate-severe disease with deep ulceration and serpiginous (snake like) ulcers in right colon (proximal transverse and ascending). Aphthous (open sore) ulcers in left and transverse colon, Descending relatively new. Mild disease with erythema and loss of vascular pattern in rectum. Inflamed and strictured ileocecal valve (unable to enter) as well as ulceration around ileocecal valve.

Sounds like a mouth-full and to me is very confusing as symptoms are so mild. I have not been started on any strong meds (currently pentasa) but am looking at 6-mp.
 
cheeky said:
if i remember correctly, based on what my past medical remarks said... my areas of inflammation are in my transverse and descending colon, but the most severe in my terminal ileum and cecum.


okay so i was just cleaning up and found my CT scan results and previous ultrasound results...

it actually says:

ultrasound:
'good portion of the large bowel, right hemicolon, and transverse colon
but also the terminal illeum'

CT scan:
significant thickening and inflammation around the entire ascending colonbut remainder of the colon appears normal and there is relative sparing of the cecum'

but when i was in the hospital last, they said it was in my cecum...

i'm confused. i dunno... but whatever, that's what the papers say!
 
Mine was originally right beside the appendix and about 6 inches, disease bad and then surgery, and then 7 years later, a second with more taken out. Have about 12-15 inches removed. Not everyone needs surgery and it is a last resort. The more you have the sooner it can come back. It can happen I have heard some have surgery and never comes back, wish I knew what their trick was. Btw you can have a normal life, once you get your concoction that works for you! Good luck.
 
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