Ischemic Colitis--Questions

Hi again, everyone. I feel kind of foolish bothering people with questions, but I'm kind of at my wits' end here.

After my colonoscopy last week, the doc found pancolitis with ulcerations. That makes sense: although I've had very little blood in the stool, it has been there, and I have seen an increase in BMs since it first started in March. I also had a bout with acute colitis back in January, and a brief fight with antibiotic-caused colitis (non c-diff) back in June 2016. However, on top of prescribing Pentasa for inflammation and Flagyl for potential infection (I guess), he wants me to get a CT arteriogram of the mesenteric vessels (blood vessels supplying blood to the bowel).

I admit I'm both spooked and confused by it. Spooked because it's an invasive procedure with some risk of terrible things like pulmonary edema--and I have major health anxiety--and confused because...why did he order it?

I was able to talk to the nurse who helped with the colonoscopy a day after the procedure, and she reassured me that the arteriogram was nothing to panic over and "just a precaution." That doesn't tell me anything. Did the doc see something to lead him to believe this could be ischemic, or is he just playing Cover Your Butt and/or Check The Box? It already seems like he's doing the latter by giving me both Pentasa and Flagyl. This seems like an awfully invasive, potentially risky, potentially expensive (because I don't know if my insurance company will agree with him) for "just a precaution." Moreover, he hasn't even gotten back the several biopses they took yet. I'd hate to get this procedure only to hear back a week from now, "Oh, it was actually UC or microscopic colitis. You actually didn't need that test. Sorry about that."

I hate to second-guess my doctor because he's the doctor, but this is my bod we're talking about here, and I've had no end of trouble with GI doctors in the past playing Colitis Jeopardy with me. It seems there would be an easier way to check for any abnormalities (like a simple CT scan), and it also seems that I would be having more symptoms--for instance, everything I've read about ischemic colitis says there's a lot of abdominal pain involved and that it tends to resolve quickly, or get worse quickly. I've had almost no abdominal pain, and this has been going on now for four months, with very little change in symptoms.

I guess what I'm asking in this rather long-winded post is this: have any of you ever dealt with something like this, or had ischemic colitis?

Yep, had biopsies all over the place, according to the nurse. Ulcerations throughout the colon. I average 4 BMs a day; about half are normal, the other half look like a rabbit used the can. Very little blood, if any; diarrhea only if I've eaten a big, rich meal. (BBQ ribs last night, for instance. Totally worth it, though.)

I had an appointment with my primary doctor today, and she was stunned that anyone would order a CT arteriogram without good reason. When I told her that the colonoscopy nurse said my primary could order the test, the latter said, "No, I can't. Not without a good reason. And I won't."

What my primary thinks may have happened is that my GI doctor wants a CT contrast arteriogram done. That's a relatively simple test--you get an IV with iodine, they let it go through your arteries, and take the scan. Takes about 30 minutes and done, and that makes a lot more sense. What the colonoscopy nurse said was the test where they slice open your groin and thread a camera into your arteries--which my primary thinks is completely unnecessary, unless they're fairly certain they're going to find a clot; in other words, if my GI doctor is pretty certain it's ischemic colitis. Since he isn't, there's a disconnect here.

I've contacted the GI doctor and am waiting for a response, but--on the advice of my primary--I'm going to refuse the invasive arteriogram until I can get a very good reason why I should do it.

What is with the GI doctors in my state? Did they all go to the same med school of "Take a Chance On Me U"?

I had the CT scan with IV contrast to rule out ischemic colitis which was negative. It was a simple test and you don't have to drink barium which is nice. My doc recently ordered it due to specific symptoms I was having. I already had the Crohn's colitis diagnosis as well.

Ugh that's awful but not unexpected from gruff specialists. If you work daily with people who are sick you tend to become more hardened, gruff, un-phased, and frank with people (not an excuse but a reality). My uncle is married to an Operating Room nurse, and he's said before you'd think that'd be absolutely wonderful when you're sick (she'd be knowledgeable, compassionate, helpful, etc). My aunt, he said, is incredibly cold when he's sick "You aint dead get your lazy ass to work," he cited once even though he felt like death from a flu or something :-P (she often dealt with patients in severe car accidents and other major trauma injuries... but still...)

But there area lot more affordable medication options for UC patients. A month's prescription for sulfasalazine costs $80.00 or less even without any insurance. And there's Medicaid for those who cannot afford health insurance, and that does offer medication coverage. There's ways of treating UC, even among those who have limited finances.

Holo

My test was called a CT angiogram-- not arteriorgram so maybe you heard it wrong?

Lol. Keep asking your questions. They can get over it. And I would make sure to tell the doctor next time you talk to him directly that the nurse told you the incorrect test -- BIG error and caused you a ton of unnecessary stress.

Good! Glad you got it all figured out.