Best QUESTIONS you've ever asked your GI

I am a newbie to all this crohns stuff as I was just diagnosed this past February. But my first question to the dr was what side effects can I expect with the prescribed medication and how long before I can expect to see some results?  I also asked him what can I do to help us get this under control. I always forget stuff like asking about drug interactions. I dealt with a pressure headache all night once because I was afraid to take Tylenol as I had not asked if it was ok. Needless to say I called first thing the next morning.

I'm usually atrocious at speaking to doctors for various reasons. What I'd really like to ask for is my medical file (which is usually on the desk), so I can read all the notes on me for the last decade, but I'm far too much of a coward to do that.

At the last consultation I thought I asked a fairly decent question though. I asked how they (the doctors) decided you were getting better on a course of treatment. The answer was basically a combination of symptoms and blood tests, eg haemoglobin and protein. Found that quite interesting.

Have you tried looking into LDN (low dose naltrexone)? It's cost is really low compared to other medicines and hardly any side effects. Usually the worst part is getting your doctor on board. Luckily mine suggested it to me.

Thanks for the input guys!

I do keep a Word document to jot down questions between my 6-month interval appointments with my GI. But this time, I've only had 2 weeks since my "progression" diagnosis to come up with questions and I'm so anxious about a new drug that my mind is blank.

I do have a list of drugs I want to ask why he's not choosing to go with one of those rather than Humira. I didn't have LDN on my list - thanks for that suggestion, CrohnieMan.

NiceCupofTea - I'm putting that question down - that's a good one for me. I've been on Colazal since 2004. I started flaring in 2008 and it lasted through most of 2009. During that time they did an Upper GI's with SMBT, an upper endoscopy, an Abdominal CT Scan, removed my Gall Bladder, bloodwork and put me on a round of Prednisone twice but never did they feel the results of any of that warranted a Colonoscopy. about a month before my Colonoscopy 2 weeks ago, my GI said he thought my current symptoms sounded a lot like IBS & mild Colitis. So I think he was as surprised as me to see what he saw on the scope. Since NONE of those other tests besides the Colonoscopy told him I was flaring, then I'd like to know how, after putting me on Humira, is he going to be able to tell it's working withOUT doing a scope.

Sometimes things are all in the QUESTION you ask...and I just know I'm going to walk away of Friday and say, "DOH! Why didn't I ask THAT?!" :)

The best question I asked was when I was first dx'd and the doctor told me I had terminal ileitis. So  I said am I going to die then? and she said oh no hahahaha thats a good one. And she went laughing to tell the other doctors. Thats sensitivity for you.

Well I thought it might make you laugh....

I'd ask about all the options on the table, and the pros and cons. There's 2 classes of drugs that you haven't tried yet I think - the immuno suppressors like imuran, 6mp, and methotrexate, and the anti-tnf agents like Remicade, Humira & Cimzia. Some doctors believe in starting with imuran or 6mp before jumping to the anti-tnf agents. Other docs believe in going to the anti-tnf agents right away. Still others pick using combination therapy with both. I would ask about each of these options, and the pros and cons of each route.

Once you discuss with your doctor and pick the route you want to take, I'd think about specifics like why Humira over Remicade or 6-mp over Imuran, etc. I also usually ask the doctor what are the side effects I need to look out for and report right away, what indications I must not ignore; I also try to get a handle on the what kind of precautions are wise to take when on this medication (not drinking alcohol, take with food, additional vitamins to combat side effects etc).

I hope you get on some meds that gets you to remission soon.

PV

@Kittikat - It's impossible to know what's going on inside, isn't it? Me, I've just done almost 4 weeks of Entocort and genuinely can't tell if my Crohn's has got any better, worse, or remained roughly the same. Even the extra energy I thought I had seems to be on the wane and I don't think I feel any better than before my colonoscopy of a few weeks ago, really. At any rate, if you do ask your GI that question feel free to tell us what he said - I'd be curious to hear other opinions.

Oh, and good luck with the Humira :p

@JavaJay - I'm in the UK, but I think we have a similar law here - if I was determined to see my medical records, I don't think my request could be legally denied. But I do feel embarrassed (wouldn't say ashamed exactly...) to ask. I have a fear of doctors, which has got better over the years, but not entirely disappeared. It makes it almost impossible for me to make requests of them. But maybe I could bring myself to ask my GP one of these days...

@penelope-marie - I saw the funny side ;p

Don't feel too bad for it though. Most people haven't heard of Crohn's, let alone terminal ileitis or the terminal ileum. It was actually a pretty logical question to ask in its way.