Are all of these colonoscopies necessary? Help me pick my doc.

I am somewhat happy with my GIs aproach - he is conservative on the meds and not in a rush to push me up the scale when Rowasa usually does the job on its own. The two things, though, that have me looking for a second opinion: he doesn't like oral 5asa, and he doesn't believe in probiotics unless you are on antibiotics.

So I go to doc #2 on Monday, and she is all over the tests: colonoscopy, endoscopy. She even talked about having me swallow the camera pill.

The thing is, I am just starting to feel like I might have this under control. I am not in a rush to go through the prep and stress of a colonoscopy. My only scopy, however, was sigmoid 2 years ago at diagnosis.

I did have a major flare in Jan - prednisone 30mg, Tylenol 3, uceris all at the same time. I am off all of that now and discovered I was horribly anemic. Blood transfusion and 2 rounds of Injectifer done.

Bottom line is that she is worried about how I have not gained back the weight I lost in Jan (35 pounds), and that I am still bleeding occasionally. To me, though, I feel like the diagnosis is moot. I do not plan on starting steroids again when I am this improved. IMO the steroid withdrawal caused the flare to spread from left-sided only to left and upper colon pain. It also never even helped the original symptoms and gave me hives during withdrawal.

Am I just being a baby about this? Or is this too much too soon for a new consult?

New docs love to start over. I wouldn't.

You've been diagnosed, you're being treated, you're feeling better, and I'd continue on that route and skip all the tests.

It doesn't matter that your old doc doesn't like probiotics. You can take them anyway if you want to. He also doesn't like 5ASAs. What are you taking?

 

Because you had a big flare and are having some symptoms still, and haven't had a full c-scope, I don't think it's out of line to have one. I do think it's a bit much have an endoscopy or pill cam, though.

A doc who doesn't believe in 5ASAs....yeah, I'd be finding someone else.

seconder said...

You've been diagnosed, you're being treated, you're feeling better, and I'd continue on that route and skip all the tests.

I second what seconder said...

Thanks everyone!

I am on Rowasa and have been exclusively since diagnosis aside from this current flare. Only change is going from twice a week to every day if my symptoms act up. Another strike against my current doc was moving me to twice a week even though I am clearly not totally in remission yet. The new doc suggested every day, so I am at least going to do that.

I was hoping to experiment with VSL#3, but then again, there are many probiotics to try before then, you're right seconder.

I guess part of me knows I need a colonoscopy at some point, but I've just been through so much lately I want a break. Do you think the doc would see me again if I refuse the c-scope? Just to talk about oral 5ASAs and probiotics?

Post Edited (Snoopydog) : 6/5/2014 11:42:26 AM (GMT-6)

If you've never had a colonoscopy, only a sigmoidoscopy, you haven't been diagnosed yet. The only thing that can be diagnosed with flexible sig is proctitis or proctosigmoid colitis. You really don't know how much of your colon is involved, therefore it would be hard for a doc to guess what meds would work for you. He saw left sided, so that's what he's treating, but your ascending and transverse colons could be involved and not being treated at all.

You really do need to have a diagnosis before you can effectively treated. Otherwise, you're trying to shoot butterflies with a blindfold on.

I think you need the c-scope, even though it sucks. Different meds have different areas they target according to when they dissolve. You need to make sure you are treating all of the affected areas. You also need biopsies done to check the inflammation type. Is it UC or something else? Is it Crohn's of the colon?

Pill cam - eh. If there's no reason to suspect small intestine involvement then I don't see why you would need to have one. Same with the endoscopy.