5 days post surgery. Crohn's free, really?

[hlmurray99]

Hi everyone. I had a small bowel resection on Monday. I believe I was told it was about a foot of my small intestine and 3 inches of cecum. The surgery was done traditionally (not laparoscopic) I was thankfully released from the hospital yesterday.

I'm doing well now but I'm trying to digest what my surgeon has told me. He said when they removed my intestine he found ZERO evidence of crohn's disease. He said I absolutely needed the surgery as I had tons of intestinal scar tissue causing a partial bowel obstruction (which gave me constant trouble). He said that he even went back to look at the pathology report and could find nothing. My GI doctor says that "once you have crohn's, you always have crohn's" but my surgeon said he didn't even see a reason for me being on steroids and said, if it were him, he'd go off all crohn's meds.

Opinions? Anyone been through this?

I should add that I never agreed with the crohn's diagnosis. I thought maybe I was in denial. Never dealt with diarrhea or weight loss (except when put on antibiotics). Never responded to any of the various meds I tried (antibiotics, steroids, pentasa, apriso, entocort, humira). But initial ct-scan with dye contrast was what first told them crohns. Later confirmed with colonosocopy. Have since had small bowel series, endoscopies, and possibly other stuff. All within last year and a half, and no one has suspected anything but crohns over and over. Odd.

 

[Thermo]

If you had all of those tests done and they said Crohns i would believe them. There are not that many diseases that cause stricturing of the TI i think what the surgeon might have meant was that they didnt find any signs of active disease which while rare is possible. What types of meds have/are you taken? I wouldnt get your hopes too high but seriously celebrate you have a true remission and ride that for as long as possible hopefully for the rest of your life!

 

[Jennifer]

I don't believe its rare (that's what remission is). Chances are there was no active disease which is great. Glad the scar tissue was removed so you can try to start living a normal life. Keep having regular testing done to make sure you don't have active Crohn's. Stopping all meds could kick start a flare so be careful there. Chances are you should be coming off steroids soon anyway if there's no active inflammation (speak with your GI about weaning, dunno what you're taking).

 

[Thermo]

Sorry let me clarify, a biopsy from surgery finding zero active inflammation or Crohns markers is rare especially with his level of stricturing which shows he has active disease and was the reason for his surgery, is not common

 

[Jennifer]

Shows there was scar tissue from what was an active disease but doesn't seem to be any longer, at least not in that area. I don't know how common that is but a stricture from just scar tissue (caused by repeated previous inflammation etc) isn't exactly uncommon. I've heard about it on the forum from time to time over the years.

 

[Thermo]

We might have to agree to disagree on this one Crabby I have read a lot of research and surgical reports that have shown that a clinical remission with zero inflammation markers on a molecular basis for a Crohns patient is statistically near impossible as the disease is always there you are simply trying to get remission from symptoms. Which I believe is why Hlmurray99 and his surgeon are so shocked by what was found. What I wanted to convey to Hlm is that active disease causes stricturing so unless he has been suffering for months or years with a partial bowel obstruction something caused it to get worse which required his surgery recently and doesn't explain the complete remission on the table as its so rare to find a Crohns patient without even a molecular flare or proof of Crohns. (Not impossible just not common) So the surgeon is under the impression he was mis-diagnosied and subsequently told him to stop taking his medications. Take my story for example my sed rate was a .5 and my Fluroscopy was clear aside from stricturing, I have been in 'remission' for several months before my surgery feeling great aside from the same symptoms Hlm had and on the operating table they found active disease in me on a molecular basis along with 6 fistulas that never showed up on any test. I just want Hlm to tread cautiously as more thought is needed because something is causing the stricuring and there are not many things that will affect the TI this way so don't make a leap of faith based on a single test and what a surgeon says. Sorry if I didn't elaborate myself more, hopefully this helps.

 

[Jennifer]

That's what I meant, that they had had this stricture for a while. Many have scheduled resections rather than waiting for it to be an emergency surgery. So my guess is they may have dealt with the scar tissue for some time before the surgery took place. Also there's a difference between clinical remission and remission. With clinical remission you will have symptoms and even small amounts of inflammation but not so with remission. I'm really not disagreeing with you in any way though.

 

[DustyKat]

I personally would believe the GI over a surgeon any day. Surgeons are great at what they do but they are not good at the ongoing care required with Crohn's. I'm sure there is many a surgeon that does a resection and comes out proudly exclaiming that due their handy work you are now cured! :lol: I am of course generalising and no doubt there are exceptions to the rule.

As to the pathology results, it may depend on what the pathologists tick boxes say Crohn's is. My son had two fistula's, two abscesses, chronic inflammation and so on and yet his pathology report from his surgery stated there was no convincing evidence of Crohn's Disease. The reason? No granuloma's, so pathology would not provide a diagnosis of Crohn's Disease.

Dusty. xxx

 

[spcwife23]

Hi the same thing with me, had a resection in my ti and the pathology report said no sign of inflammation, crohns can not be found. Do not get off all meds, you need some kind of meds to keep your crohns from coming back full blown.. i have been in remission for 2 months but i keep taking humira to keep crohns in-active. Do not let some surgeon tell you to come off meds.. ive seen on this forum where people come completely off their meds and a year later things are 100 times worst and they wish they just stayed on some kind of med. Crohns can never be cured but it can be put into remission, so be careful who you listen to.

 

[hlmurray99]

First off, I'm female, in case it makes a difference:biggrin:

I'm very perplexed by it all. I've probably had (just based on the pain I used to experience) partial bowel obstructions for many, many years (possibly as much as 15 years ago or so in college) I would get intense pain, but usually at night, and by the time morning came it had usually passed and so I'd ignore it again. I mentioned it a few times to doctors who brushed it off cause it was never occuring at the time. It was later dismissed as ovarian cysts and did ease up for the most part while I was on birth control. Aside from the random partial obstructions (which Im just ASSUMING that's what they are based on what I know now) I had ZERO symptoms. When I finally stopped nursing my youngest I started having these pains again and at least once a month. Again it was brushed off as menstrual related, which I knew timing-wise was not correct. However I never did think it was anything really worrisome. They started to happen more often and including vomitting, but I'd stop eating for a few days and be okay again. Finally went to the doctor because I was divorcing and knew I'd lose medical coverage soon, and she noticed I had pain to the touch. She sent me for an immediate CT-scan with dye, where they told me that they knew it was crohn's and advised I be admitted to a hospital. Being a single mom I said no and went home on a liquid diet with a GI appt the next day. That was January 2011. Since then I've had all the tests which all indicated crohn's, but I had no symptoms other than the partial bowel obstructions. The right sided pain did become mostly constant and never responded to meds and I swear I only got worse since diagnosis and meds. Never developed diarrhea or any other symptom.

I have no doubt that the GI doctor is the one who is most equipped to handle my GI issues, but I just find it so odd that my highly recommened and experienced surgeon was utterly baffled by this.

 

[jmariel]

Hi, I had the same resection surgery about 11 years ago. Doctors told me to stay on my meds, not all but just some- like pentasa. You know how annoying those are, and I was feeling fine, so I stopped everything. You know how they always say it could/will come back in 5 or 10 years? Like clockwork, about 10 years passed and I had the excruciating pains that I had almost forgot about.

In between my surgery and the 10 years it came back, I still did my follow-up colonoscopies. Just ditched the meds. I don't think taking them really would have made a difference.

 

[jmariel]

PS, Good luck and congrats on being disease free! Enjoy it!!