GI Appointment

[Binxybop]

Hey all. This may turn a bit rambley...

I have an appointment with my GI doc tomorrow. This will be my 2nd appointment after the initial diagnosis. I felt like a lost little girl after my first appointment and nodded and went along with everything he had said. Since then I have been keeping a diary of the different kinds of pains, feelings, BM's etc. I am also not happy with the Pred & Pentasa medication I was put on it has not really worked with stopping my symptoms... I felt better (still not 100%) for a total of about 2-3 weeks and then started to feel unwell again.

Also, what do you all think of as normal? Do you always have discomfort, because I always do. Theres always some kind of ache and twinge even when my BM seem to be settled and regular. I dont want to have this discomfort all the time but then I just dont know what is realistic? I still get the doubled up pain at intervals, a few every day at the moment, as well as the constant discomfort.
I think the disease has gotten worse since my initial sigmoidoscopy and now have pain in different areas to where i did initially.

What I dont want to do is go in all guns blazing with all my diary info and overwhelm him which would be the exact opposite to what i was when he first saw me (all quiet and nodding like a donkey!)...

What has been the best way you guys have approached such a situation when you want to change drugs and demand more tests to confirm the seriousness of disease?

Absolutely any advice input would be great, feeling a bit stressed today.

Oh, I also have my first job interview since November 2009 4 hours after the GI appointment tomorrow!! :ylol2:

 

[imisspopcorn]

Go in with guns a blazin' girl!!!!

Make a list of your concerns and symptoms and ask him point blank what he thinks.

Everything you just told us, tell him. That's his job.......By the way, Donkeys don't always nod, they can give you a good kick in the butt too.

 

[Binxybop]

Go in with guns a blazin' girl!!!!

Make a list of your concerns and symptoms and ask him point blank what he thinks.

Everything you just told us, tell him. That's his job.......By the way, Donkeys don't always nod, they can give you a good kick in the butt too.

Hehe, I love the Donkey comment :ytongue:

I think I'm a bit worried that I'll annoy him or something and he'll be all like " yes, yes, i've heard this before, lets just stay on the pentasa for another 3 months... blah blah blah" and I need to be able to say "No, its not working" but I just know i'll just end up nodding away...

Should I write what I am feeling down in a letter and maybe ask him to read it..?

 

[Jennifer]

From my experience, doctors love it when you come in with a list. And all the ones I've met laugh and are game and ready to start writing.

As long as the list is organized. Say you want a certain procedure done or want to try a certain medication, name the procedure or medication and say why, then they will decide. Go down the list from what you think is most important to the least. Last time I did the list I had about 8 different topics.

As far as pain and discomfort goes, everyone is different but when I'm in remission like I am now and have been for a while after my surgery in 2000, I don't experience noticeable amounts of pain or discomfort. Sure I may feel something every now and then but I don't automatically assume it's my crohns or even worry about it. I still have diarrhea more often than not but like I said, everyone is different.

Lists always made my appointments seem very quick and usually didn't leave any unanswered questions.

Good luck with your interview.

 

[Crohn's 35]

A letter is a good Idea, my Gi read mine but keep it brief, and they can absorb it better, some people are visual learners, myself and daughter are the same.

Dont let him walk over your questions it is the reason he is treating you, because everyone is different no matter how many times he has heard it before. I used to be a yes, yes...not any more but I am never rude, just tell him like it is!

BTW: Good luck on the interview!! Let us know how both sessions go! Go get em'!

 

[Jennifer]

Also if you forget to tell the doc something or forgot to ask a question, you can always call their office and leave them a message and they will get back to you. There's no point in waiting for another appointment or giving up and saying, "oh well."

 

[Binxybop]

Update!

So, I took in the piece of paper with all the writing on it and he said that I was very organised and it helped a great deal (woot!)

Doc is organising for me to have an emergency colonoscopy early next week to get a better look around the lower bowel as it is just not right at all.

Good news is he agreed with me on the steroids and will decide the best treatment after results of the colonoscopy, possibly enema or some kind of IV treatment.

I;m now also having to adopt a low residue diet which will be great as I somehow managed to gain 12 pounds in weight since 10th December (thanks steroids!!).

Also, also, also I was asked back for a 2nd interview for tomorrow morning after my 1st interview this afternoon! So speedy! Very exciting

Also, also, also, also the site seems to be crashing lots, I can only view about 6 different threads properly. helps viewing it in default style, but only a bit...

 

[tamesis]

Ooh, that all sounds very promising! Glad to hear that he's getting some speedy treatments for you, and super exciting on the job interview!!

yup, the site has been down off and on for a couple days now.....Hopefully back up for good now!

 

[Crohn's 35]

Great that you doc is understanding your issues lets hope you are on the mend!

 

[imisspopcorn]

Yipee Binxybop!!!....You go girl!

 

[Miss Rose]

Hi Binxy
Sorry nothing is working for you. What dose of steroids have you been on ? They might just having you tapering too fast. I had to keep going back up on the dosage for a few days whilst tapering whenever my symptoms threatened to return and then I was able to continue with the tapering again. Today I did not take any pred for the first day so I am keeping my fingers crossed that the Pentasa and Aza will be doing the trick on their own.

 

[Peaches]

Great news Binxy! Hopefully they will be able to get you on better meds and get this thing quieted down for you so you won't be in pain. Good luck with the scope!

 

[Binxybop]

Just got some sucky bad news from the doc

Some results of my barium x-ray showed narrowing and a stricture in my terminal-whatsit. Great. I am officially riddled. Have CD in large and small bowel it would appear.

Hopefully I just need the tube stretching rather than sliced n diced and removing...

To top it off I have had 6 visits to the loo with D today, I NEVER get D. I'll be reading around the forum for more info I think.

Thinking of changing my name to "Binxy Stingy Butt III"

oo:

MEH!

 

[kenny]

Meh I hate that stingy but thing when it happens!

It would be nice if they can try the balloon thing for you.

 

[imisspopcorn]

Sorry Binxy girl.......Don't go worrying about surgery yet....It really depends on how narrow the bowel is.....Feel better. Have you tried the miracle bum cream named Calmoseptine?...It cools that burning down fast.

 

[Peaches]

I'm sorry Binxy!! I hope you can get the inflammation calmed down - I guess that would explain a lot of your diarrhea and pain. Like Pop said - if you don't have a tube of Calmoseptine - it is a great investment to make. Hope you feel better soon!