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What questions to ask the GI?

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Crohn's Disease
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Posted 10/4/2007 4:25 AM (GMT -8)

I was diagnosed with Chron's four weeks ago after I was sent for a colonoscopy for rectal bleeding. Previously, I had never been to a GI or any Dr. about my "digestive issues" that I've had for at least 20years.   Following the Dx, the GI prescribed me Asacol and had a conversation with me by phone to give me a brief explanation of what Chron's was all about. He then said to educate myself by going on the web. I've been reading all that I can (and getting more confused). I'm trying to make sure I have a list of questions for him when I finally get to my appt next week (Very long and stressful 5 weeks w/o getting to sit with the Dr. to understand my Dx or treatment). So my question to you all:

What are some questions that you would be sure to ask your GI on the first visit????

I just don't want to walk out after the visit and realize I didn't ask some big important question...

Thanks for your help!!

Posted 10/4/2007 5:53 AM (GMT -8)
Ask what the colonoscopy showed. Did it show ulcers, inflammation, narrowing? What parts of the intestines are affected?

What if any changes will you have to make to your diet? For example, if you have narrowing he may want you to be on a low fiber/low residue diet.

Your doctor is obviously using the lightest meds first and working his way up, so ask him if these meds he's giving you don't work, what is the next step (hopefully there won't be one, but it's good to be prepared)? Ask how long you should give these meds to start working before you need to move to the next step.

Depending on what kind of digestive "issues" (diarrhea, constipation?) you've been having, what does he recommend to control these issues until the medications start working?

Ask him if he'll give you meds for pain management (even if you don't need them now, it's good to know his views on the subject if you should need them in the future).

Ask how available he is for questions and/or problems. Does he want to know if you're in a lot of pain or should you go straight to the ER? Ask him who else you will be dealing with if he's not available (a partner in his practice, or an all call doctor he swaps with) and how available your records will be to that person?

I'm sure you'll get many other questions to ask from others on this site. Start a list, keep adding to it as you go along. Make another copy of your list and hand it to the doctor when you go to see him. If you don't have time to answer all the questions, or he doesn't have all the answers at that time, he can take the list and get back to you (I e mailed a list to my surgeon).

Good luck. I know it's hard getting this diagnosis, but at least now you have a name for all the problems you've been having, and even though there's no cure, there are plenty of treatments available. Don't be afraid from what you've read on this or any other site. Each disease and each person is different, and the people on these sites are usually the ones who are new looking for answers or people with severe disease looking for options. Many Crohn's patients can control the disease with little disruption in their lives.
Posted 10/4/2007 6:59 AM (GMT -8)
Thank you for your insight, Judy! I hadn't thought about asking him who I would be dealing with if he's not around.

You've also helped me immensely by pointing out that their are many people who are out there with this disease with little disruption in their lives. Calms my fears a lot. Thank you.
Posted 10/4/2007 9:44 AM (GMT -8)

Wow Judy! I should have "talked" to you before I started several off and on conversations with my doctor. Great info.

knottedup - I feel for you. I have pretty much been going through the same thing. Minimal information from my doc and when I do ask many questions he acts like I am wasting his time. I realize he is busy, but this is a frightening, difficult thing to struggle with. I even ended up mailing him a letter since I thought it would be better to have some answers in writing since he seemed to change stories after talking to him a few times. And, now that I have made a decision about what med I would like to start on, he is too busy to respond to my phone queries.

Apparently all GIs in my area are overbooked and do not have time to answer questions. Good luck!

Posted 10/4/2007 2:37 PM (GMT -8)
Hi knottedup~

Judy has given you tons of good suggestions.  I just wanted to welcome you to Healingwell!  Also, I wanted to point out that I am one of those people who have had minimal disruption in my life.  :)  When I get sick, it's a day or two at the most, and I am better again.  I have only had one severe flare, and that was when I was diagnosed, almost 5 years ago.  Just work with your doctors to figure out what treatment is going to work for you.  If one doesn't work, step up and ask for other options.

Posted 10/4/2007 3:25 PM (GMT -8)
hey knotted, welcome! just remember when this is all new it is really stressful and there is so much to learn, decide, and deal with. meds and docs really take time to figure out and you are in the right place for help! take care, yp
Posted 10/4/2007 5:09 PM (GMT -8)
Hi Knotted,

welcome to the club. When I was diagnosed almost 3 years ago I had little to go on. My GI (I've since changed) showed me some of the pictures of the inflammation in the terminal ileum and told me to come in the following week.

One thing that I didn't see mentioned here is follow up tests. Things like a small bowel series and CT Enterography are important for knowing where your Crohn's is and what it's actually doing to you.

Make sure you ask the GI about doing additional tests, ask what he/shee sees as your prognosis.

be careful with the internet, however. Forums like this are great, but everyone's experiences are different. I stopped looking too much when I realized that I had a mild case of Crohn's, but the posts I was reading on some sites were scary. They were from people who had been through so much, and I wasn't ready to know about the possible long term effects.

I have also had very little disruption, sort of. I never had the "D", but I would get a terrible cramp in my abdomen when I climbed stairs, lifted something or exerted myself, or even if I got stressed. My then GI insisted that that was caused by IBS, adn the Crohn's wasn't that bad.

The ccfa website and mayo clinic website are good resources. I'm very luck that my GI group has very knowledgeable nurses whom I can talk to when the doctor isn't available, and she's incredibly busy. And no question is unimportant, remember that.
Good luck, and keep us "posted"

Susan
Posted 10/5/2007 5:10 AM (GMT -8)
Thank you all for the warm welcome and advice!

Susan, the follow up tests are something I would not have thought of--thanks!

I'm feeling much better today having taken all your words and knowing that I need to just take my time and wait to hear what this GI has to say. I've decided I need to also not read so much b/c like you all said I'm reading about a lot that may or may not be something I will experience. I find myself now noticing every little thing about how I feel....whereas before I just went along and accepted stomach pain, chronic C and other things as just "me" and continued about my merry way. I actually feel worse since starting taking Asacol than I ever did before...but who knows.. it might be because I'm actually noticing.

I guess I have to find that balance between educating myself, yet not letting it all take over my every thought.

I'm glad I found this place! Thanks!!
Posted 10/5/2007 6:06 AM (GMT -8)

knottedup said...
 I I actually feel worse since starting taking Asacol than I ever did before...but who knows.. it might be because I'm actually noticing.

I guess I have to find that balance between educating myself, yet not letting it all take over my every thought.

Make sure you talk to your doctor about the Asacol.  Some people don't tolerate it well.  I know I don't tolerate this class of drugs at all, and many people on the site have also had issues with it.  If it makes you sick, nauseas, cramps, etc., chances are you will end up being non-compliant anyway, so you and your doctor will need to come up with an alternative treatment plan. 

Educating yourself is very important, but yes, it's a double edged sword.  I prefer knowing what I may be up against and knowing what treatments are available, but this education has come slowly over the years as I've needed it.  Try not to scare yourself too much ;0)

You want to be able to make educated decisions about your treatment instead of just blindly doing what your doctor suggests.  Every person and every disease act and react differently, you and your doctor, together, need to come up with a treatment plan that works best for you. 

Posted 10/5/2007 10:31 AM (GMT -8)
Again....wise words. Thank you.

I am wondering if the Asacol is not agreeing with me. I guess I've just been so use to sucking up whatever I feel in terms of aches and pains. I need to be sure that I don't just pass things over,,, but talk with the GI about what is best for me. I pretty much don't feel like eating and go between mild naseua and being full feeling since I've started it. This is week three and I thought it'd go away. The headaches have but not the occasional burning and mild naseaus feeling. I've been wanting to loose a few pounds, but this isn't the way I wanted to do it! Lol.


Thanks!
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