If I'm not in a flare, will the colonoscopy show anything?

[Lizzy613]

Hi all!
A month ago I had a CT scan for intense abdominal pain and discovered that 15cm of my terminal ileum was badly inflamed. The doctor suggested it was likely I had Crohn's or an infection and booked me for a colonoscopy to get more results. At a follow up with my GP a week later, she said it was unlikely an infection would last that long. So anyway, I've been eating things that are supposed to be safe for crohn's (no seeds, no corn, no whole grain, etc) and my symptoms have improved. My colonoscopy is in another month and I'm worried that if it is Crohn's, they won't be able to tell because I'm not symptomatic (Presumably the pain and diarrhea/vomiting is caused by the inflammation?). I was considering going back to my normal diet the week or two before the scope to trigger the symptoms, but obviously i'd rather not be in pain.

All that to ask, if I do have Crohn's, will they be able to tell from the Colonoscopy, even if I'm not actively symptomatic (aka in pain)?

Thank you for any help you can give me!

 

[Jo-mom]

Definitely don't go back to eating anything that might aggravate your symptoms. The colonsocopy should be able to show what's going on. Usually they will also take a biopsy to see if you have crohn's as well. You don't have to be flaring to be able to see if you have crohn's. Be grateful you are feeling better. It will be good for you to find out what's going on. Also, although your symptoms are better, it doesn't mean you still don't have inflammation. Good luck!

 

[Scipio]

Even if you are not actively flaring (symptom-wise) there is still a lot of value in getting a look at the situation via colonoscopy. Symptoms and active lesions don't always track together. Each can sometimes exist without the other. And even if your inflammation has subsided it's still a good idea for the doc to get a visual inspection of the extent of the damage that the earlier flare inflicted. And, as Jo-mom says, it would likely be very informative to collect biopsies of the affected areas.

 

[Cross-stitch gal]

I'm not in a flare either, but my GI is bugging me to do one too and I will later this year. I was diagnosed over 20 years ago and because of that, my doctors want to do a colonoscopy on me every 2 years. Reason being, because I was diagnosed that long ago that I'm more prone to Colon Cancer and/or polyps. Yes, like the others said it can be very informative even if you aren't in a flare! Please keep us updated and know that you're not alone!

 

[Catherine]

My daughter wasn't in a flare. Her colonoscopy showed a 10 cm damaged area in the large bowel.

She is now scheduled for surgery.

 

[Lizzy613]

Thank you everyone! You've really put my mind more at ease one less thing to worry about is always good. I'll keep you updated after my scope in april!

 

[Mountaineer01]

Hard to say if it will show anything or not. I was a difficult diagnosis - it took well over a decade. Colonoscopies would show some minor inflammation in the lining; however, an MRE showed thickening of the walls of the ileum, thickening and tethering of the small bowel, and a couple of small strictures. Rather than being in the lining, most of my inflammation was inside the walls. Biopsies may or may not show this. According to my GI, only about 10% of Crohn's cases manifest themselves this way. I figure I'm an outlier on everything else, so why not this too.

 

[Lizzy613]

My scope got cancelled/postponed to an unknown date because of all the covid stuff i do understand why they had to, but i'm still feeling frustrated about it. Hopefully this pandemic clears up soon so I can get some answers

And so that people stop getting sick of course

 

[teeny5]

I haven’t been in a flare in a long time and my last colonoscopy still showed all the scaring where the disease was previously. My GI said that he could see where and how severe the disease was (he was not the GI who did the initial colonoscopy when I was flaring).

 

[Lizzy613]

My colonoscopy has finally been rescheduled for next week! I'm feeling pretty stressed about it, which of course is making my gut unhappy, but at least I might get some answers soon!

 

[t-bone]

That's great news!

... the waiting is a stress all in of itself

One positive thing you can do in the meantime is to search for good advice on how to get the best possible results from any/all testing.

A clean and well prepared system will give the best visual presentation, so I've always erred on the side of low residue foods that I tolerate well in the last few days before the testing. They clean out easily with the prep solution, and that gives the doc a really good view so they can choose the sites they want to do tissue sampling with greater confidence of getting a good, representative sample that will give excellent results from the pathology folks

Getting them the best samples will get your doc the most accurate information they need to form a good treatment plan
That's what makes the ordeal worth it!


One thing I wish I knew before my first couple times I had this test was how to keep the skin down there from getting all irritated from the constant wiping
I've found that vitamin A & D creams or lotion (like for diaper rash) is absolutely magic at reducing skin irritation during the cleansing part of the prep.
Just apply a bunch of it (externally only!) before you start the prep, and then when you're done after each trip to the bathroom, just add a lil more
It'll cut down on the itching/burning and skin irritation that comes with the diarrhea the prep will give you.

It just can't be stressed enough that this is a mostly visual procedure, and following the best practices will give the best results

Hope you have good luck with the prep, and great luck with the results!

 

[Lizzy613]

Well guys, the colonoscopy went well and the doctor said it is super likely that I do have Crohn's :/ the biopsies are coming back in a couple weeks, but just from my symptoms and what she saw she said she felt pretty confident. Thank you for all your help! Time for me to figure out some ways of dealing with this now...

 

[my little penguin]

Glad your finally getting answers
Hope you find meds for a speedy recovery