Extremely bummed...(no pun intended).

[horseluvnhonee]

Hi all...

Well...I'm at work now and have my procedure note. Looks like the colon prep was majorly "suboptimal"!! How was I supposed to know though?? I was a little scared because it sure took a long time for things to start lightening up...but I was getting fairly clear returns before we left the house....the nurses thought I should be fine.

So..he wrote "prep was suboptimal throughout the entire colon". He also had trouble advancing the scope d/t "redundancy of the colon"???. They did "get a view down into what they thought was the cecum"...although the confluence of taenia and ileocecal valve were not definitively indentifed". They did take random biopsies which aren't back yet.

So....that pretty much says to me....Crohn's could have been completely missed between the bad prep and the inability to advance the scope. I am soooo dissapointed right now. I did my prep just the way it told me to,etc. I don't understand why it was so "suboptimal"....maybe it has to do with whatever is going on?

What do I do now? Obviously...I wait for the biopsies to come back....but what if those are ok? Do I just take his word for it that the parts he could see were ok? Or do I get a second opinion.

I just see so many of you posting that your disease is located near the ileocecal valve....what if mine is there too and they just couldn't get to it? Isn't that where Vit B12 is absorbed and mine is low....kind of makes sense.

Like I said in other posts....I wasn't super convinced that they would find anything....but some of it did make sense...first the joint pain, fevers, etc...then the ferritin and B12 deficiences, then the mucus and blood on my stools. Anyways...I'm ok if I don't have anything...but can't stand not knowing if something was missed...if that makes sense?

I'm so sorry to whine and groan. Even though I'm a nurse, this stuff is new to me personally....just looking for some advice. Thanks everyone!!! You are all great!!

Olivia

 

[horseluvnhonee]

Oh...I forgot to add too.....my pain is always in the right lower quad. I am never sure if it's intestinal of gyn/endometriosis related...although I did have an increase in that pain during my bowel prep and now..it's been pretty constant post-scope.

 

[Crohn's 35]

Dont worry my 2 two were seen but the two times before that, he couldnt get past the valve area either, and I didnt even have narrowing. I know they dont always see it, but they have a vaccume to suck it out when they are in there so he could be blaming himself or should be. Wait and see what he says if you dont like what you are hearing, perhaps get a second opinion. Hang tight.

 

[imisspopcorn]

Hi there Honee....I'm a nurse too......My disease is in the terminal ileum. My colon is normal. The doc never was able to flip the scope into my ileum for peek....(For 10 years) Finally after my resection they could visually see the disease. I did have positive CT and SBFT results showing thickening and narrowing of the lumen....Have you had any other tests???

You can ask the doctor to give you a trial run on Prednisone and one of the mesalamine meds to see if you respond....

I hope that helps.