GI appt. Thursday - what to expect?

[Entchen]

Hi, all

My first GI appointment is coming up this week (Thursday). The GI's assistant tells me that we will probably just be having a conversation (versus any procedures, etc.). Hurray! However, I am wondering what that discussion is going to centre around and would appreciate your input, please. (And, do you think the secretary is right about the no-examination part?) What do you normally talk about with your GI, and are the conversations usually centered around observable signs and test results, your reported symptoms, or a mix of the two? And, do appointments usually lead to further tests?

After diagnosis, I was placed on Salofalk (5-ASA), which many of you have noted is about as mild as they come. This isn't a complaint (I've done the Cipro + Flagyl thing and it wasn't pretty), but it is a little surprising considering the biopsy report states that my current disease level is moderate-to-severe. In 2 months + 1 day on the drug, my pain has decreased, but there only small, if any, changes in the other symptoms (and some of the pain returns if I eat veggies and whole grains like I did pre-diagnosis, too). Do you think that I should be preparing myself for additional tests or medication, or is two months maybe too soon to tell if the drug is going to help move me toward remission?

Sorry, one more thing: GP tells me that my iron levels are continuing to drop despite supplement use. She has asked me to discuss this with the GI. If supplements are not working, will I necessarily be placed on iron shots, or will the GI first try increasing the dose yet again? I've been on 4x what the bottle recommends for 5 months now, yet the anemia is worse. (I can confirm at least some blood loss.)

Thanks so much! Your help really got me out of some anxious moments before the colonoscopy in May, and I appreciate having a place to ask these new questions, too.

 

[GoJohnnyGo]

The GI will probably check under the hood.:blush:

Make sure you get your main points/concerns across in the interview. It's easy to get sidetracked. Remember your GI works for you.

Good luck Kelly.

 

[Entchen]

Thanks so much, Ed (for the warning + the info). I have prepared a short handout for him w/ brief history (allergies, not much else), current symptoms, and questions.

Um...you don't mean sigmoidoscopy, or do you?

 

[GoJohnnyGo]

Thanks so much, Ed (for the warning + the info). I have prepared a short handout for him w/ brief history (allergies, not much else), current symptoms, and questions.

Um...you don't mean sigmoidoscopy, or do you?

Well, I almost suggested having a PowerPoint presentation ready to go!

And probably more a peek than a poke!

 

[Entchen]

*phew*

I'm making enough PowerPoints these days already, with the first day of class just a month away! The handout it is.

 

[DustyKat]

Hey Kelly,

I don't imagine you would be having anything invasive done as you wouldn't be prepped for it. Perhaps he will give you a basic check, palpate your abdomen, height, weight that sort of thing and then decide what to do with your treatment based on his conversation with you, as in further tests, etc.

Do you have a referral to take with you?

Have you had bloods done recently?

Dusty.

 

[Entchen]

Ok, that makes sense, Dusty. Thank you for this info! Was so nervous about the thought of something like that that I forgot about the need for prep.

Re. your questions, some blood work was done at the end of June (showed decreased iron), but the full-work up, including inflammation markers, was last checked about 8 weeks before the official diagnosis.

Moving on...the referral was sent before the colonoscopy in May, so that's done with, but an excellent question on your part. I'm looking forward to having Dr. S. as my GI because he seems very respectful and kind and likely to possess a bit of a sense of humour. I think we'll establish a good working relationship! I'm also not looking forward to having him as my GI because he's male and I'm modest - hello, hang-ups!

 

[Astra]

Aw good luck Kelly!
I don't think they'll do anything invasive neither! just feel your stomach etc.
I'm with ya on the male doc tho, finger up the bum! oh God! you leave your dignity on the doorstep!
try not to fret hun, anxiety will flare you up
love lots
xxxx

 

[DustyKat]

Hey Kelly,

If he was going to make any med changes, apart from maybe iron, I wouldn't be surprised he ordered more bloods to be done so he had up to date results. Just a thought.

When Roo see's the GI it is at this time, based on what Roo says and what he sees in front of him that he makes decisions as to her ongoing treatment so if tests were required this is when he would make them.

I see you've also said that you have prepared a report and questions so that's good.

HTH,
Dusty

 

[Entchen]

Thanks for the info, ladies! More bloodwork before decisions about meds makes sense, and I think would be a smart plan. Have even found a place not 3 blocks from home that knows how to draw multiple vials without me feeling a thing (the trick is a long, flexible something-or-other at the end of the needle that they use for the draw). This is good, because when I had 8 vials drawn at a different place, the needle shifted every time she picked up the next vial, and it was not the most pleasant experience ever.
Sounds like Thursday will be manageable and nothing shocking! That's a relief!

 

[duck68]

Good luck Kelly. My GI usually just asks me how I've been feeling - any improvements/setbacks etc and then writes me another blood test slip to check FBC, CRP and something else that I can't remember right now. Anyway, other than that nothing else.

I'm sure it will all go ok for you.

Take care

 

[Entchen]

Thanks for the info and assurances, everyone. I felt pretty comfortable going into the appointment, thanks to you all.

He asked about symptoms, we discussed how to proceed, and then he answered my questions. All very nice and straightforward, although I think we'll need to work hard at not misunderstanding each other. For example, I said I'd like to lose weight and he looked aghast, thinking I meant I wished I had the kind of Crohn's that caused dramatic weight loss (good grief, after reading what others on here go through? I think not). I assured him that, no, I meant losing the 30 pounds I've gained since this all started (thereby once again being a healthy weight and fitting into my clothes). I felt embarrassed and we ran into a few more similar snags, but I think now that I've gotten a better sense of his "style," things will be easier. He seems to be fairly abrupt when he wants answers, and then more conversational when he wants to discuss things and answer my questions. I can work with that.

We decided together that I'll do a 6 week taper course of prednisone starting at 30 mg (I was balking at 40 and he didn't think it was necessary, either). This decision surprised me because my plan all along has been to avoid pred at all cost, but I appreciated how he listened to me and provided pertinent information. He was respectful, didn't push, and he shared that he also wasn't certain about the decision. Thing is, I certainly am doing better -- just not better "enough" for someone who is two months in to treatment (we both agreed on that).

My questions for him:

1. Biopsy said moderate to severe inflammation, but does it look like I'll be a moderate to severe case? He said probably not, more like mild to moderate, but he can't say for sure since the colonoscopy only went half way. I'll take the good news, thank you! *insert YIPPEE here*

2. Can I try an alternate prep next time since the gallon of salt water didn't work? He didn't hesitate even half a second before saying OF COURSE. So that's wonderful news, too! Bye, bye GoLytely...may you go not-very-lytely back down to the dark place you came from.

3. Can I call his office if symptoms change or get worse? He smiled and said OF COURSE again. That helped make up for slightly bumpy start to the appt, knowing that he is going to be receptive to me and my concerns.

We're going to have another appointment in mid-September. Will plan to then move to appointments every 3-6 months unless otherwise needed. If things are going really well, we might be able to move to every 12 months eventually.

Aside from going to spin class, I haven't done anything else productive all day...just been kind of stunned that I'm taking prednisone. Because I've done a little studying about the psychology of cancer (ex: participated in workshops and other things at a cancer treatment centre for a year when I was in grad school), I associate prednisone with "major illness" and "huge side effects" (pardon the pun!). So even though Dr. S. emphasized that it's less toxic than my other current options, I thought I'd just allow myself a day to be a bit stunned. Back to getting things done tomorrow!

 

[DustyKat]

Oh Kelly, I'm so happy for you that everything went well for you, well maybe except for the pred! What a blessing that you have a GI that validates what you are feeling, listens and answers your questions. YIPPEE!!!!!!

At least there's plenty of folk here to help you along with your pred journey.

Take care,
Dusty

 

[EthanPSU]

Have fun kelly. I think I am on my...100th? GI appointment in a week lol. I got use to just going it...seeing my weight....telling them how the medication is doing....they either prescribe another or keep me on the same...talk about life....then time to go....lol

 

[Entchen]

Thanks, Dusty and Ethan! I was a "little" sharp with someone on the phone today and the headaches are not fun, but otherwise it's been a pretty easy start to life on pred. Ethan, you are clearly the expert on GI visits!

 

[Aura]

Kelly, you sounded well prepared and organised for the GI visit. I am on my third GI now after moving house times. Each one of them is different, but what does not change is my need to get answers. I try my best to think about what I need to know and make sure that I leave with the answers and I do not let them get distracted or sidetracked. In my first flare I lost a huge amount of weight - but with my current flare the weight is slow to budge due to the PCOS and diabetes etc. Hang in there with the predno journey and think of some cognitive strategies to manage the side effects if you get any. We are here for you - so take care and good luck with your classes.

 

[Entchen]

Thanks so much. I appreciate your insights. Good that you have a system for dealing with GIs, and I will make a note of what you've said about working to keep the appt from going off the rails.

Re. cognitive strategies: I'm definitely going to have to practice thinking through what I'm saying. The irritability went away after 2-3 hours, but then I realized that I hadn't left a good impression with that person I was sharp toward.

So far, so good for other side effects, though -- some headaches, hunger, but I get those symptoms with Crohn's, anyway. I weighed myself twice today, which is pretty ridiculous considering nothing is going to happen so quickly!

 

[Aura]

To me with the cognitive strategies I like to take responsibility for my actions. I will own up to mistakes and apologise and explain that meds impact on my emotions and responses. In my mind I have to assess if my responses are as a result of my meds, my emotion focussed coping skills, hormones or due to an external issue. I also like to reframe my thoughts to focus on actions I want to see. I do my best to limit negative self scripting. E.g. instead of feeling pain and feeling sore I tell myself acute pain will go away. In my head I know that I will not be in accute pain for 24/7. The reason I do this is because of a chocolate cake. If I tell you "Don't think of a chocolate cake with two layers, filled with whipped cream and melted chocolate icing!" The brain automatically things of it, it has to before if thinks of recognising the "Don't". We have some signs on our roads that state "Don't cut the corner" That's a bugger cos I head for the centre line, I have to keep saying to myself "Keep left, Keep left"

My long term goals are set and I use them as a focus. They are simple: To sleep lying down; for chrons to be in remission; to be free of pain.

Keep me posted on some of your cognitive strategies and how they are going

 

[Entchen]

That's awesome. I love the idea of telling yourself that the pain will pass. Must try this one (right away). And the cake line is much more interesting than the original study ("Don't Think of a White Bear!"). Since thought suppression is believed by some to be a root of obsessive thinking, your suggestion is something important for me to keep in mind. I'd hate to see myself 5 years down the road stuck in a rut of thinking all the time about how awful it is to have pain. So, instead of "oh, my goodness, I'm stuck with this pain on and off for life," I'm going to try out a few ideas and find a good replacement line. Will write the line down and place it in my bowl of meds so I know where to find it if I forget it (I keep my meds in the kitchen, so I thought a bright blue Tupperware bowl might keep the bottles from looking too out of place! Used to keep them in the pantry, until the day I forgot to take ALL 3 doses of Salofalk. So now they stay on the island except when company's over.).

Re. your question, my primary Crohn's symptoms strategy falls under the umbrella of cognitive scaffolding: providing little hints to ensure things are done effectively. [Hence the bowl of meds in the kitchen.] My primary scaffold for pain is a list: I keep a list of the things I have in my "bag of tricks" for dealing with Crohn's-related pain or anything else challenging. When something comes up, I can go to the list -- okay, have I tried belly laughter (I'm sure CakeWrecks.com eases pain), progressive relaxation, or peppermint tea? When people are in pain, it's hard to focus on anything else (like when your hand is in front of your eyes, all you see is hand). Since it's hard to focus on anything but the pain, I find it is difficult to remember my strategies for coping. But, it's always easy to remember a sheet of paper in an easy-to-spot location. Very basic, so straightforward that many people wouldn't consider this an actual technique, but it works well.

Thanks for sharing your strategies.

 

[Aura]

When I was trying to shift my wallowing from pain to a more positive approach I plastered my house and toilet with post it notes of the phrases I used. Lounge, kitchen, loo and bedroom - so that the idea of the eye being drawn to the paper when sharp pain occurred. In the end I learnt to look for the post it and then I did not need the note anymore it was part of my thinking. Your list is a very practical idea, sounds a great strategy.

 

[Aura]

The White Bear - is not as effective for students here. We don't have bears apart from the zoo. But all the students so enjoy a chocolate cake - it works well to make a point. :ytongue:

Sharp acute pain will pass. The 'pain will pass' is short and sweet and should work well to shift negative self scripting. Good luck with it :ybiggrin:

 

[Astra]

Hiya Kelly

glad you had a successful appointment, your doc sounds really sympathetic. try not to fret about the Pred, it's not our favourite drug, but it does the business!
It's only temp, and your weight will come off eventually, I worried too, and now i've finished with steroids the weight is reducing, I'm no longer worrying about it, what will be will be.
take care
xxxx

 

[Entchen]

Yes, temporary, and thank goodness! My best girlfriend took it upon herself to read about prednisone and we had a nice conversation about it this morning.

 

[Crohn's 35]

Hey Kelly, that is great that you have good Gi, out of 5 only 2 were acceptable for me. Having a doctor care about you will help you get better sooner and you are more relieved. Stressful enough this disease causes without having a doc in his own world (ego) or not believing your symptoms. Yeah Prednisone is not a great drug but it helps get your Crohns in check and helps when you taper to find a lesser side effect drug to maintain your symptoms. I hope when my current Gi sends me to another referral specialist that they are caring.

One thing I noticed in all my years of this disease there are no female doctors in the field..wonder why.

Hope you are on the road to recovery and staying that way!

 

[DustyKat]

One thing I noticed in all my years of this disease there are no female doctors in the field..wonder why.

Oh I don't know, maybe 'cause most women have enough shit to put up with in their lives so they probably don't feel like working with it as well. Just my two cents worth.

 

[Entchen]

Hahaha, DustyKat!

I read somewhere, wish I could remember the source, that Gastro is considered a traditionally male field, like surgery, because it's fairly competitive and can involve quite a bit of technical know-how. This explanation drives feminist Kelly nuts, but what can you do.

Thanks, Penny, for your kind words. I saw some improvements today! Yay! A friend and I were joking today about 'roid rage and "don't feed Kelly!"