Crazy check

[vanilla_chai]

Hi everyone, thanks for taking the time to read this... I'm feeling really emotional still about the time leading up to my surgery and am considering emailing my Dr but I'm afraid I'm a bit crazy. I'm not normally an overly emotional person but I think I've cried more over this than when I miscarried last year... so here is the long version...

Last Dec I was in the hospital for 5 days for a blockage and after I switched to an ibd specific gi who I saw in Jan. At the time, the guess was that I had scar tissue BC I'd just had Remicade the week before the blockage and I'd appeared to have inflammation under control for a year. I told the GI my main concern was avoiding a blockage during pregnancy and looking to get the OK to try again after I'd miscarried last year. He said he suggested doing an MRE and then if its inconclusive to do a pill can with the idea that we were ruling out surgery so if it got stuck that would be the answer. He also asked if I had time to meet the surgeon so we'd be ready to schedule surgery if the MRE indicated that. So I talked w a surgical resident who drew a bad rendition of a colon and ti on a napkin and explained what they usually do for a resection when the stricture is against the icv. Then I met the surgeon. He was nice and I told him I was concerned about a blockage during pregnancy and he told me he had delt with it before and tried TPN before operating on a pregnant woman. I felt good about that and I went on my way

In Feb I had the MRE

In Mar I talked to the GI and he said the MRE was inconclusive and he was pretty sure I didn't have a blockage but since I was looking to get pregnant we'd do the pill cam just to be sure

Apr I did the pill cam and sure enough he called 2 days later and said it was just bouncing around and not going anywhere so it was time for surgery. The surgeon's nurse called a few days later and told me a few things over the phone, no prep, it was considered a right hemicolecomy. I asked if I'd get to meet with the surgeon again and she was surprised and said "didn't you already meet him?". I said yes but back in January (a full 3 months prior) and she basically said no, I wouldn't see him again till the surgery.

This really left me feeling isolated and alone. By the time I got to surgery it had been 5 months since I'd met him and never got details about my specifics which I think would have made me feel so much better. He did try to explain right before I went under for surgery but it was the 2 months of waiting that was so nerve wracking.

So I had all these feelings that I just tried to ignore, but then last week my friend saw a different surgeon who was so attentive. My surgeon just came by 1 time post op but hers was there everyday.

So, to m dilemma, Tues I saw the GI who sent me to the specialist in Dec. He asked me if I'd seen the surgeon I had and wasn't he great? I said he was nice but I was jealous my friend had just seen the other surgeon who was so attentive. He seemed very taken aback and I very poorly tried to explain it was just a timing issue. The issue is he's friends with my current GI and I'm a bit concerned he might tell him I was unhappy

So here's my question ( for anyone who has read this far...). I've started to write my GI an email explaining all this but it just sounds so winey and emotional. While this is an accurate reflection on my current state I'm not sure how useful it is in a medical context. I'm also afraid he'll think I'm unstable and stop taking me seriously...

Any thoughts?

 

[Jennifer]

Did you send the email? I know this post is a bit late. I was wondering why you were sending your GI an email when it seemed like your issue was with the surgeon. To me it doesn't matter if they are friends. Its not like you'll get poor treatment from your GI from now on. And if you ever needed surgery in the future, maybe you could have a different one.

I think I saw my surgeon once before my surgery, then again afterwards and that's it. Until it got infected, then I got to see him again. He hung around more then.

 

[Kristi M]

I feel for you. I am the mother of an 11 year old Crohn's patient who is now a 6 year veteran. The best advice I ever received is to ALWAYS listen to your gut. If you are uncomfortable, you owe it to yourself to make happen whatever it is you need to happen to be at peace.

If that means meeting with the surgeon, you contact his nurse and let her know that you prefer to meet with him prior to the surgery.

This is about you, not how your GI doc or his friend the Surgeon feels. (You are their customer, right ?)

Take care and Best Wishes,

Kristi

 

[vanilla_chai]

Thank you both so much for writing back. I didn't send the email yet, its still sitting in drafts. I hate being such an emotional mess and hate admitting it even more...

The GI and surgeon work together on a team (3 GIs and the 1 surgeon) and meet weekly. Everyone talks about how personable the surgeon is. I think they put a tremendous amount focus on patient care which I believe is why my GI's had me meet the surgeon in January.

But why write the gi and not the surgeon? I guess there are a few...

1) The GI decided when to have me meet the surgeon and to do so before I had any tests back. Had I known that would have been my only meeting I think I would have asked even back then to wait. The only hesitation to that would have been it probably did get me through the process faster and I am feeling the clock tick on having a family (I'm 35 and this crohn's thing is really complicating things)

2) My feeling stressed about all the medical stuff of the past year actually somewhat came up at my last apt with my GI and he seemed confused and I wasn't able to articulate exactly what was stressful... The stress of waiting for surgery without details wasn't even clear in my head. (which is only part of it but a large part)

why not just move on? I'm actually having real problems with work/personal stress crossover. I work with a group that does electronic development and support for medical records for a large group of providers. I'm getting flashbacks to stuff at the weirdest time. We were working on the standard abuse series they ask you (the do you feel safe at home ones) and while the questions themselves aren't stressful, I got a full flashback to laying in the bed getting ready to go back for surgery, bc that is the last time I was asked those questions.

on one hand, all the in my face emotions has give me quite the chance to ponder why all this upsets me so much... on the other hand, its been horrible for my focus at work

Sounds like I need a therapist, huh? I actually reached out to the guy I talked to in high school and asked for a recommendation and he said he'd have to think about it - that was 2 weeks ago... I'm feeling very alone and isolated...

thanks again so much for the replies, it helps so much to talk it out and everyone in my life is exhausted from hearing about it

 

[Jennifer]

Ya it actually does sound like a psychologist/therapist might be a good start. If typing out the letter didn't help at all (can sometimes be used in therapy, but you don't send the letter), then I think it's something deeper than that that needs addressing. I'd request a referral for a psychologist to talk about these flash back feelings and what almost also sounds like feelings of guilt and regret.

Edit: I feel that if you do send the letter that it may not help with the stress at all. You've already expressed concern about what "might" happen so I fear that you'll constantly worry after you send it rather than get a sense of relief.

 

[vanilla_chai]

Thanks crabby. I think its probably a live and learn situation. I really wanted to ask if I could meet with him before the surgery but I didn't want to be difficult. I need to quit that. It works fine in real life but its too stressful being sick to pull off long term.

I did write the guy again about the recommendation and he had forgotten to send the info. Im planning on calling in the morning and giving that a shot. Hopefully that will help...

I also have the month of screenings going on, mammogram this Friday, then a pap, then a colonoscopy at the end of the month. I'm hoping getting past all that will help in and of itself.

Thanks again for the support, the stress of it has really hit me like a ton of bricks. In the past year I got pregnant finally, then miscarried, then had a d&c, then my body took months to get back to normal, we tried 1 month then I ended up in the hospital with a blockage, have cists on my liver, had 2 "probably benign" mammograms, the last one took 10 shots as well as my usual ultrasound. Was on mostly liquids for at least 4 months, and was nauseous almost the full year. I switched GI s, had 2 ct and an MRE along with a pill can that got stuck. I've gone on the rollercoaster of hearing I'd probably need surgery back to the tests showed nothing ( like the past 12 years), I'd finally made peace with that when I learned I did actually need surgery. I think I've seen 20+ drs, not counting radiologists and anesthesiologists...

I know its not as much as lots of people go through but I clearly need some better copings skills or at least a different job but I'd prefer coping skills

 

[Jennifer]

Psychologists do specialize in coping skills. Sure some people go through more but you're still going through a lot and that's really stressful. Keep up the good work by staying on top of your health.