First colonoscopy: *Not* Crohn's??

[itsMeFred]

This could, quite possibly, drive me insane!

A month ago, my GI made my Crohn's diagnosis primarily based on my CT (distinct inflammation in both my ilium and colon), then-current pain and bacterial infections and my history.
I've had occasional blood in my stools over the course of several years. Anal skin tags (other than hemorrhoids, what else causes anal skin tags?). Occasional sharp pain in my right side...

I mean, as soon as he put a label on it, and I connected the dots to things that have been occurring my history, all of the pieces fell into place. It made perfect sense.

Today was my first colonoscopy (now if that wasn't just a little bit of joy!) and things are topsy-turvey again.
I was mostly-conscious for the entire thing. Even asked if I could have my glasses back so I could watch the monitor. It was quite interesting, actually. The entire intestinal tract that that he explored was healthy looking. Extremely healthy looking, even. (I haven't had D or mucus or anything for several weeks.)

During the procedure he was already thinking out loud that the "flare" that had landed me in the hospital last month might have been just infectious colitis caused by the bacterial infections...

But what about the ilium? Or the bloody stools a few months/years ago? Or the skin tags? Or the recurring (though uncommon) abdominal pain?

My follow up is in 2 weeks when he should have biopsy results back.

What are some thoughts on this? Might I get lucky and this was just a flukey infection of some sort?

 

[itsMeFred]

Seriously? 43 views and no one has an opinion?

 

[beth]

Have you had your gallbladder checked for stones?

 

[lj3]

well the thing is it aint that simple lol! it can be a hard dx to actually make. i was dx via a ct enterography too and going in to be scoped next week so huh wonder what they will find. were you put on meds right away after the ct dx?

 

[itsMeFred]

Well I sure hope it's not gall stones, because I had my gb removed 10 years ago!

And no, he didn't put me on meds immediately upon DX. Other than steroids, that is. I was on steroids from the time I got out of the hospital until about a week before my colonoscopy.

 

[Lisa]

It could be that the steroids took care of your inflamation- surprised he didn't order the colonoscopy while you were in the hospital.....

 

[Terriernut]

Erin, obviously the steriods did their work and you are in remission. Hence, no inflammation. It wont stay that way though if it's Crohns.

I had a flare (an almighty one) in 1997. Then nothing until 2009. Or so I thought, meanwhile the disease (which I didnt know I had!) was doing it's business! Then the flare and perforated bowel again in 2010.

The thing is, if your Dr thinks its not Crohns, what does he think it is? If he cant help you, please go to a different GI and get some answers.

I hope for your sake, that it isnt Crohns or UC though!

Misty

 

[Mister_Hotspur]

It doesnt sound like Crohns to me, but im not a doctor. I would put the blood and skin tag down to hem'roids and the bacterial infection sounds like thats all it was, and pain? maybe indigestion, maybe wind? lol (pain is a tough one to call though because everyone has different tolerance levels)

I really hope this is all it is for you, i know a lot of people are frustrated with non diagnosis which is why it suprises me to see a doctor managed to diagnose you after a CT scan alone. (Ill assume it was an American doctor? lol)

 

[itsMeFred]

I would put the blood and skin tag down to hem'roids

But I don't have hemorrhoids...

The thing is, if your Dr thinks its not Crohns, what does he think it is?

Well in his mutterings, he threw out "infectious colitis." Would that also include the inflammation in the ilium, though? (I realize a good gut infection can affect various parts of the GI tract, so this would be logical, right?)

It could be that the steroids took care of your inflamation- surprised he didn't order the colonoscopy while you were in the hospital.....

Given the level of inflammation, he was really concerned about perforation so wanted to give my system a chance to cool down before he started poking around in there.

 

[Terriernut]

More tests for you then little Missy!!! (that isnt meant to be nasty, just what one Dr kept sayin to me!) Infectious Colitis??

I just hope you didnt give it to anyone then! :eek2:

I really do sincerely hope they get to the bottom of it, pardon the pun. You dont want to get sick again!

Misty

 

[Jenny06xx]

Hey Hun don't give up the exact same thing happened to me!

I was told ibs for years , after my gb removal!.
I was in soo much pain last year (jan onwards told ibs or gastritis etc) rushed to hospital in sept stayed for 3 weeks an still couldnt eat solid food ,diagnosed with crohns from
ct scan put straight on pred an was able to eat after it kicked in .
Then scoped told all ok !
Came off pred back to sq 1, had pill cam this march an finally got a 100% diagnosis of crohns !
Pred seems to work too good to have a scope while on it an not flaring so when your off it if your symptoms come back request a pill cam an you should get a diagnosis .
Hope this helps Jen XX

 

[xJillx]

It could be that the steroids took care of your inflamation- surprised he didn't order the colonoscopy while you were in the hospital.....

I agree.

I wouldn't not dismiss this too easily. I sure hope you don't have Crohn's, but being that you have had issues in the past and not just recently, causes me to be skeptical of your issues being caused by an infection.

 

[Mister_Hotspur]

Might be worth asking your Gi on their thoughts on Postcholecystectomy syndrome?

 

[itsMeFred]

BTW, thanks for ruminating with me, everyone. I appreciate not having to sit here just wandering Google! lol

More tests for you then little Missy!!!

*snork* lol

Might be worth asking your Gi on their thoughts on Postcholecystectomy syndrome?

I had to look it up.
That is upper GI pain, though, right? Not mid (straight across from the hipbone) like mine is...

Pred seems to work too good to have a scope while on it an not flaring so when your off it if your symptoms come back request a pill cam an you should get a diagnosis

Oh sigh...
I'm back on pred, btw, for a systemic poison ivy infection. My first exposure to the stuff and it's everywhere! Fortunately, the pred. seems to be working its magic, so hopefully I'll be off it for a good soon so I can see what my body is really doing...


So here's another question:
If I continue to be asymptomatic, do I need a dx? Can I get away with just monitoring with an annual colonoscopy or something?

 

[lola99]

Well I hope for your sake you don't have crohns. Anal skin tags can be caused my fissures. Thats what mine were caused by but now that I've started all my meds they shrunk and kinda almost disappeared. I had inflammation in my colon but other than that nothing. Never had any bleeding and I've suffered from horrible stomach cramps for a few years. Never had dirrehea. My doctor diagnosed me with crohns after having a ct and seeing thicking/swelling of my small intestine and then the inflammation. I wonder sometimes how I can have crohns if the cramping and inflammation is all i have. Maybe I just have mild crohns? I hope they figure it out for you. Not knowing what is wrong with you can drive a person crazy. My husband still isn't convinced that i have crohns.

 

[grizzly700]

My G.I told me that Crohns is a hard disease to detect even with a colonoscopy because it comes and goes.lt becomes dormant.

 

[Mister_Hotspur]

I had to look it up.
That is upper GI pain, though, right? Not mid (straight across from the hipbone) like mine is...

Its something i would consider asking your doctor about is all i mean, since youve had you gallbladder removed.

From; http://www.medfriendly.com/postcholecystectomysyndrome.html

"One of the most common symptoms of PCS is pain, such as sharp pain in the lower belly or a dull pain"

I dont get pain across the hipbone, my crohns pain is in my right side.

 

[itsMeFred]

Yeah, so is mine.
It's straight across from my hipbone. About 3 or 4" in.

I know they gave me both CBC and HFP the week I ended up in the hospital and both came up normal. (The CBC being normal was really odd, given my level of bacterial infection, btw). And wouldn't something have shown up on the CT?
They did a general abdomen scan and so far as I know, the only abnomalities that showed up were the inflammation in my ileum, colon and appendix.

I mean, it's something I'll be sure to ask about, (I am in the risk-group) but I can't help but think I've had enough tests by now that something else would have been noticed, KWIM?

 

[xoxava]

im sorry youve had so much trouble. im not quite sure what my opinion is. i couldnt imagine having a label and then it being taken away bc things "looked" healthy. i hope you get some answers and improvement soon.

 

[elfgibson]

i had colonoscopy on Monday and the doc. said I had inflammation and some mucus, but will go on tuesday for a CT scan. I'm hoping the crohns isn't back been is remission for 15 yrs. after resection.