Do you take someone to your GI appointments?

[SupportiveMom]

A thread in the parents section brought up that people should never go to their GI's alone. So here is the question. Do you regularly take someone to your GI appointments?

 

[duh panda]

Always...! 24 and I still bring mom, starting to bring my S.O. into the loop and swing of things regarding appointments and not just day to day experience of living with a crohnie as we've been working toward est. Care in a new state. Always helps to have a second set of ears and voice to help advocate especially when I've been too driven or distracted and haven't been tracking how I'm doing they can speak up and be like.... she's napping more or eating less etc.

 

[Cross-stitch gal]

Always. Sometimes my husband will remember something I forget. Plus, it helps for him to know exactly what's going on.

 

[Crohns11]

I'm 36 , my mum or partner comes and sometimes my niece or sister. It's always good to have someone else who can listen or say things u may have missed.

 

[kikig]

Never, not that I don't want to but the few times I have, they have come out of it more baffled than they went in, so I end up having to explain everything many times.
I think its because I speak a certain amount of medical lingo, I understand it and it doesn't "phase" me - managed to learn that language by the age of 8

Its also, I absolutely hate disrupting the "normal" people's lives around me. Its not always easy for me to get time off work/convenient appointment times, I feel guilty putting that hassle on other people.

And I have moved country 3 times (3 languages) in the last 6 years so thats also a bit of a challenge :ybiggrin:

 

[emmaaaargh]

I normally go alone nowadays. Since I was diagnosed as a child my parents always came with me, but now I'm able to go alone (our hospital requires children under 16 to always have a parent with them for outpatient appointments + phlebotomy) so I do! I don't need them to be my advocate any more.
It's also more convenient for all of us, since I can just get the bus to the hospital straight from school, especially as the delay for our GI clinic is usually more than 45 minutes. It saves them from getting bored and/or missing work!

 

[scottsma]

I always go alone.My husband drops me at the door then picks me up when I ring him.I usually make a list of questions and just hand it over to the Gastro if I need to.
Even when I go in for surgery it's the same routine. Child Birth,hysterectomy,eye ops,tooth extraction etc.


P.S. This is my choice,not because my hubs doesn't WANT to come.

Although he is allowed to visit and fuss over me when I get home :lol2:

 

[SupportiveMom]

Wow Emma how old were you when you were diagnosed? I think why my 14 YRS old is thinking one day she wants to go it alone is because she speaks the lingo like me being around it so much and researches She has made it clear she only wants to go alone for check ups, not when a flare or an issue is happening so I can be the mama bear like Dusty Kat & advocate. Do you think your young diagnosis helped you to advocate at your age better? If you were in a flare or doc was talking about moving you to biologics would you want your parents to come then?

 

[FrozenGirl]

I am an adult-ish (almost 20) but my mom still comes with me to appointments. I will get dropped off in the waiting area for scopes if my dad drives, he doesn't wait with me. I feel like I would be okay by myself but sometimes it's nice to have someone and my mom wants to come.

 

[ronroush7]

I usually go by myself.

2

 

[DEmberton]

I don't really have a choice than to go by myself.

 

[emmaaaargh]

Wow Emma how old were you when you were diagnosed? I think why my 14 YRS old is thinking one day she wants to go it alone is because she speaks the lingo like me being around it so much and researches She has made it clear she only wants to go alone for check ups, not when a flare or an issue is happening so I can be the mama bear like Dusty Kat & advocate. Do you think your young diagnosis helped you to advocate at your age better? If you were in a flare or doc was talking about moving you to biologics would you want your parents to come then?

I was 9 when I was diagnosed! I think the young age was definitely a factor in my independence. From the start I always wanted to be the one in control of my treatment - I'm the kind of person that hates not knowing what's going on. I was a really shy kid, though, (to be honest I still am!) so when I was younger it was easier for me to sit back and let my parents take the lead.

That said, I think a big part of it is also being comfortable with my GI. I had an awful paediatric GI before my current one, I think he was probably more used to dealing with the parents than the children because his bedside manner was terrible. He actually wanted to put me on biologics back then, when I was flaring, and I refused. But since he seemed unwilling to actually address me personally, I outlined my arguments to my dad so he could argue them for me. It worked!
I'm much happier with my current GI - he's actually an adult GI, but took me on when I was 15 - and because we share the same approaches to treating the disease, it's easier for me to go alone, because I know I won't have any sort of fight on my hands.

I think if I was flaring again or was thinking of changing to biologics it wouldn't really matter to me whether I took my parents or not. That sounds kind of callous! It's not meant that way, though. I know that they are always there for me if I need them, but my mum always wanted to raise me to be independent so that when the time comes when they're not there anymore, I can do it alone and it isn't a shock.

I also prefer to go alone for more personal reasons. I know my parents to this day still feel guilty about my having Crohn's, even though I can't remember a time when I wasn't okay with it. So when I go alone, they're not constantly reminded of how different I am to other kids my age, and the fact that I'm always the youngest person in the waiting room of the GI clinic. They don't have to dwell on it. I know I can't help them feeling guilty, but at least I don't have to constantly remind them.

I guess it's a really individual thing! It's not like I don't discuss my appointments with my parents afterwards. But they've always let me take the lead with my healthcare. Finally being able to go alone is almost like a rite of passage for me, I suppose. I feel all the more proud for it, because it helps me feel more in control than when I was young.

 

[hawkeye]

I was diagnosed in my last year of high school so one of my parents went with me to my appointments then, but since that I have gone it alone except for a couple of times my wife went with me.

 

[Tesscorm]

S is almost 21 but I go to all his GI apptmts. I do pretty much exactly the same as Dusty described in your other post...

- I don't go with S to his regular GP appointments
- I do go to every GI appointment but, as time has passed since his dx and he has grown older, I've let him steer the appointment and only jump in when something needs to be corrected or expanded upon, ie if I think S is forgetting to mention something or if I don't think S fully understands what the GI is explaining (or possible complications).
- Before GI appointments, I have always discussed any questions I will be asking with S - I think/hope this has shown S what I believe to be important issues and allows S to understand the relevance when the discussion begins with the GI. This also allowed S to ask me his own questions before seeing the GI.
- At the end of the appointment, I also always ask S if he'd like to speak to the GI privately - once or twice he has said yes, so I know he's comfortable answering me honestly.

The last few appointments, I've barely has reason to speak because either the GI or S brought up any relevant points.

Also, I've asked S if he minds that I attend... he's said he has no problem with it.

It is a bit of a tightrope to walk...

 

[SupportiveMom]

emma, As a parent of a girl i raised to be independent that feels guilty about my kid having IBD I hope my kid never shields me. My guilt is my problem, not my kid's. She has no fault in any of this. I also know my guilt is not something I should have. As a parent we just tend to take these things on, realistic or not.

If I go to an appointment or not I am reminded my kid is being robbed of the life she deserves, the life she wants. She is robbed of it because her crohn's is not under control. Seeing it going to a doctor, or with another dinner interrupted because of bathroom trips doesn't change it. You don't remind them. The disease does that all on its own. I hope you keep this in mind in deciding to include your parents or not. Obviously you know what's best for you, just think about being there more for support and advocacy when you need it.

This disease makes all of us mature way faster than we should have. I am glad you have collaborative care treatment with your doc. I hope we find that soon.

 

[rose*flo]

I am 34 and I go with my mom. We both have a copy of questions I write down, then if I forget something, she will jump in.. Also I record the Dr on my iphone so I can listen to his answers later if I forget something he said.

 

[kikig]

Also I record the Dr on my iphone so I can listen to his answers later if I forget something he said.

Your doctor has given consent to be recorded? I don't know many who would be ok with this tbh

 

[2010mustang]

I take my wife every appointment. since she remembers things better than I do. it also keeps her knowing where my body id at/what the meds are doing.

 

[SupportiveMom]

Wow more than 41% go alone... I'm surprised.

 

[24601]

Me too! That's so different from what I observe in my GI clinics! Haematology too! Could there be some bias about big London teaching hospitals? Or our sample on the forum? Interesting. I may ask my gastro docs what they would estimate!

 

[Jennifer]

My mom went with me into my late 20's, nowadays I'll take anyone who's willing to go.

 

[DougUte]

I always take my wife with me to my GI appointments. She is up to date on what is going on that way.