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Second surgical opinion/Question of Crohn's

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Ulcerative Colitis
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Posted 8/15/2014 9:14 PM (GMT 0)
I just got a second opinion from a colorectal surgeon. Here is my story:


UC diagnosed in 2005. Scope showed proctosigmoiditis but also a couple of other patches of inflammation. So, I had some "skip" areas.

I take balsalazide daily and use Rowasa enemas about twice a week.

Scope in 2011 showed diverticulosis and otherwise normal mucosa/normal biopsies.

Scope in 2014 showed diverticulosis and otherwise normal mucosa.

I've had now TWO bouts of diverticulitis. One was treated at home w/ antibiotics, the other I was admitted to the hospital for IV antibiotics. Both considered "uncomplicated."

TWO gastro doctors recommended surgery to remove the area affected by the diverticulitis--a colon resection.
This is to take care of the problem electively and prevent a more serious bout of diverticulitis later, that could include an abscess, fistula, or perforation.

The first general surgeon I saw agreed with the recommendation.

The second surgeon- a colorectal surgeon- also agreed, but when on to question the skip areas and mention the possibility of Crohn's. He explained in great detail the possible outcomes of elective vs emergency surgery. He explained that he didn't think removing the whole colon was necessary, but that a temporary ostomy was a possibility depending on what he sees when he gets in there. He said to schedule surgery, "when it works for you in the next couple of months."

My husband is uncharacteristically freaked out about this removal of a chunk of functioning body part, although I'm oddly calm.

The surgeon also claimed that I am one of maybe three people he's encountered with this issue. Lucky me.

Any thoughts or opinions are appreciated.

Chinamom
Posted 8/16/2014 12:36 PM (GMT 0)
I feel like I should add that this is made confusing by the fact that I feel fine now, and would be electing to do something to prevent something from happening, and no one can tell me the odds of that actually happening. Nobody can predict how likely it is that I will EVER have another bout of diverticulitis, so I could conceivably end up with an ostomy in an attempt to prevent something that would never happen, although I guess if it were bad enough in there to need that, it would have happened eventually?
Posted 8/16/2014 1:18 PM (GMT 0)
I always find it interesting that they do these colonoscopies to "see what's in there" and then a surgeon says something like "he won't know until he sees what's in there". I've seen this happen a few times. Scratching my head. I'm missing something somewhere.
Posted 8/16/2014 1:41 PM (GMT 0)
My husband said the same thing-if the colonoscopy sees the inside of the colon, and that's where the trouble is, what is he going to see looking at the outside of it once he gets in there? I don't know the answer to that.

I guess what gnaws at me a bit is the idea that ALL FOUR doctors I've spoken with are pretty much going on the assumption that I WILL get diverticulitis again. And I don't know how actually likely it is. And while he readily admits that it's not his body thus his say is not the most important, my husband really struggles with the idea that I would be having a functioning, necessary body part removed to prevent something that MIGHT happen, and expose myself to the risks of surgery. For something that MIGHT happen.

I don't know. I really don't.

Chinamom
Posted 8/17/2014 2:50 AM (GMT 0)

garylouisville said...
I always find it interesting that they do these colonoscopies to "see what's in there" and then a surgeon says something like "he won't know until he sees what's in there". I've seen this happen a few times. Scratching my head. I'm missing something somewhere.

A colonoscopy can only visualize the inside of the colon. When you do surgery, you can see the outside of the colon (as well as all the layers of it, if you remove it or part of it), and that's where you would be able to detect symptoms of Crohn's.
Posted 8/17/2014 5:13 PM (GMT 0)
It is true that crohn's is patchy inflammation, UC consists of the entire area that is affected to be inflammed...CD has "skipped" inflammation so it's like the tissue is "marbled" with healthy and inflamed tissue.

Considering you have diverticulosis as well as an IBD (which from your description sounds like CD, not UC...CD can affect any part of the GI tract and even more than one area at a time, when it affects the colon it's called crohn's colitis) I'd say it's definitely worth really thinking about the surgery....my MIL has diverticulosis as well, she ended up having a perforation in her bowel and they did emergency surgery on her by giving her a temporary ostomy for about a yr before she had her ostomy reversed....ever since her reversal she does nothing but complain about her tummy bugging her....countless tests and scopes have showed nothing...it's been 9 yrs now...she often says she wished she kept the bag cuz she wasn't in any pain...I told her to go back and get it put back on if that's the case.
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