Best QUESTIONS you've ever asked your GI

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Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 5/31/2010 2:53 PM (GMT -7)   
So my 3rd colonoscopy 2 weeks ago showed my Crohn's is progressing.  I go this Friday to talk to my GI about new treatment - he'll be recommending Humira.
My mind is so clouded.  I don't know what all I need to ask him while I'm there.  I was wondering if you guys have any questions you've asked your doctors over the years that you thought were GREAT questions that were helpful to you and you were glad you asked?
You know how you always think of a great question AFTER you leave the doctor's office??? I'm trying to avoid that. tongue  
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
Current Rx's: Colazal (generic), Omeprazole (PRN), Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills; Slow Fe (PRN) 
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 5/31/2010 4:42 PM (GMT -7)   
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.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 5/31/2010 6:37 PM (GMT -7)   
When I write treatment plans (not medical treatment) I have to describe a few other treatments I concidered and discarded and why I decided to use the one I decided to use.
I like to ask my rhuematologist that question-what else have you concidered and why did you decide to try this?

Elite Member

Date Joined Jan 2010
Total Posts : 10090
   Posted 5/31/2010 7:13 PM (GMT -7)   
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.

Veteran Member

Date Joined May 2009
Total Posts : 703
   Posted 5/31/2010 7:50 PM (GMT -7)   
I type up all my questions as I think of them between visits then print them out before my next appointment.
Cimzia, Asacol

Regular Member

Date Joined Aug 2008
Total Posts : 190
   Posted 5/31/2010 8:47 PM (GMT -7)   
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.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 4x/day, 500mg Vitamin C, 1,000 I/U Vitamin D3, 1 Florastor 2x/day, 1 Nature's Way Primadophilus Reuteri at bed time.
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.

Regular Member

Date Joined May 2010
Total Posts : 266
   Posted 5/31/2010 10:16 PM (GMT -7)   
Kittkat: I go see my GI for the first time post colonoscopy. My list of ?'s is growing! I want to know what this dz is like in the last 1/3 of adult lives, the expected management, signs/symptoms to call him for, expected outcomes, when does he want to see me again, what does he think about hookworms, the Makers diet (or any dietary recommendations). I know what I have read on the message boards, what reputable internet sites say (ie Mayo clinic etc) regarding this disease process. Now is the time to him to prove himself to me-does he take the time to answer my questions, does he listen to me, how is the office staff and am I comfortable with the medical professionals that are supposed to be the "experts" in this disease process. Some of this information is obtained over time and comfort evolves, but a list is crucial to a successful appointment. Its your time, you are the consumer and it is your right to know (knowledge also provides a source of compliant behavior to improve outcomes) so this is really a win-win opportunity!

Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 6/1/2010 11:04 AM (GMT -7)   
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?!" :)
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
Current Rx's: Colazal (generic), Omeprazole (PRN), Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills; Slow Fe (PRN) 
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 6/1/2010 12:51 PM (GMT -7)   
NiceCupofTea - You are allowed by law (in the US) to get your records.  All you have to do is ask.  Don't feel ashamed to ask.
Kittikatt - If you go on Humira, ask the doctor how long it will take to kick in with your kind of CD.  I am on Remicade and found out about 4 months later that with CD in the colon, it can take up to 6 months to kick in.  I wish I knew that ahead of time.

Regular Member

Date Joined Sep 2008
Total Posts : 54
   Posted 6/2/2010 7:25 AM (GMT -7)   

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....

had crohns for 15 years took pentasa then nothing but diet but stricture appeared 3years ago and problems since. Had abscesses more than once
Taking VSL#3, glutamine, multivitamins, slippery elm food, aloe vera, vitamin d, grapefruit seed extract, no meds at present

Regular Member

Date Joined Jan 2010
Total Posts : 432
   Posted 6/2/2010 7:45 AM (GMT -7)   
When I was a kid and they told me I had Crohn's, I asked if it was my fault for drinking too much soda.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
The surgeon said it is inoperable and so I start Remicade on May 7th.

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 6/2/2010 7:34 PM (GMT -7)   
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.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

Regular Member

Date Joined Jun 2004
Total Posts : 59
   Posted 6/3/2010 11:39 AM (GMT -7)   
I can tell you from being a guinna pig for Crohn's meds, Humira worked for me. At the time Humira was my last resort. If it didn't work, they were going to take my colon and rectum out.

Humira does burn when injected, but only for a few seconds. You do get used to giving it to yourself.
                          Happiness is having extra toilet paper!

Elite Member

Date Joined Jan 2010
Total Posts : 10090
   Posted 6/3/2010 1:26 PM (GMT -7)   
@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.
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