Being a better self advocate.

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Saturday I spent time visiting family with my parents. We ended up seeing my aunt and uncle.

My aunt is someone anyone would love but can be a very commanding figure when need be.

She suggested that I be more commanding with doctors and flat-out tell them what I want/expect. And if they cannot deliver on that then they need to refer me to who can.

She said it is BS that they have done nothing for my pain, nothing to keep me able to even do normal day-to-day things like keeping my house clean.

She suggested that I go with the idea of firing every doctor that doesn't give new solutions to the problems I am having.

My mom agrees and even wants to go with me If she can to my end-of-the-year appointments.

So now, I am going to go in like I am demanding a ransom.

Like, This is what I expect and if you cannot, they send me to who can.

One thing is that I know that my colon surgery guy is very good. He tells me it is and reviewed my whole case. I have done a lot of online studies this week and about 65% of people that have done what I did end up with more surgeries.

None of this was told to me by my Florida doctors. Heck my surgery guy was pissed off when he found out that I was in the ER/ED in November 2018 before they found what almost killed me. He is pissed that they did not ever do blood work/ CT or anything but give me bowel clean-out medication.

He went so far as to have me fill out a full information request from the Florida hospital so he can see everything including notes from those doctors.

So all in I am trying not to stress but I got to have a goal for the end of the year and it looks like surgery is in my future again.

 

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I totally agree with your aunt you've been shrugged off and passed around with plenty of tests. Being leftin pain is ridiculous.
Glad the colon surgeon is actually listening and taking action.

 

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@Maymay941

A lot of people here have told me to get new doctors. Until recently it was not an option due to insurance but now I can. So my goal is to see what my GI doctor has to say at the next visit and if she has no new options/tests or anything then she is gone.

Truth is the only thing she has done for me is three test but she has never followed up with me after my botox in August to try to get me on different medications or anything.

I like doctors that want the best for their people. Not just get them in and out.

 

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Have you considered asking the colonsurgeon for referral ames of doctorsrs he respects

 

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@Maymay941

Yep. I am also going to ask my physical therapist as well.

I don't have to have referrals for most things and my PT is very good.

She is even someone who suggested that I try to get a second opinion from my colon surgeon as to what he thought was going to have to happen.

@Maymay941

Here is what I don't want... To have another surgery that will affect my life more and then be told I am all good again and should just suck it up and go back to a job. Because that is what happened after my stomach surgery and now I am in the situation that I am in now.

Don't get me wrong. I love to work but my surgeon and PT both told me that I worked way too physically of a job way too soon after surgery and it may have added to the damage I have now.

 

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I'm proud of you for addressing the issue of pain management and fear of an operation.

 

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@ThatFLGuy Unfortunately in my experience it's true you just have to keep fighting and fighting until you get what you want. It really felt like I was waging a war with my GP surgery here day in, day out trying to get a referral to a Long Covid clinic. It's exhausting and draining but eventually you get results.

Hope you get the answers and treatment you need soon!